Nov. 16, 2017 - Today - Nov. 16th - is "World Pancreatic Cancer Day". My mother was diagnosed with pancreatic cancer 10 years ago & fought a most brave & graceful battle that ended up lasting only 9 months. I've often said that the last 9 months of my mom's life were - ironically - the greatest gift my mom ever gave me.
In April, 2008, I posted in the "Buresh Blog" a chronicle of those 9 months, & I've decided to re-post today what is a brutally honest journey for me & my family that is a much deeper window into my personal life than I usually care to publicly divulge. Since my mom's passing, I've been involved with the Jacksonville pancreatic cancer network, especially "PurpleStride" - an annual walk/run. This has given me the opportunity to meet & talk with a number of survivors & caregivers - very inspiring & truly enlightening. Pancreatic cancer is the ace of spades of cancers - just about 7 out of every 10 that are diagnosed die within the first year. Here's to continued research, work & understanding as we #WageHope against one of the deadliest cancers on earth today.
Originally posted April 9th, 2008 - "A Very Personal Journey: My mom's battle against pancreatic cancer":
If you read this blog frequently, you'll occasionally find that I talk about things outside of the weather world. This post has nothing to do with the weather & everything do with a personal battle, a journey. The battle was being waged by my mother...the journey was me coming to terms with the prognosis & final farewell. You'll find a few posts during the last 8-9 months that contained info. about cancer.
Some of you might remember commercials ("promo's" as they're called in the business) that had my mom talking about my fascination with the weather at a very young age. My mom became a sort of star in Jacksonville & surrounding areas. In fact, when she was admitted to St. Luke's hospital in early Jan., '07 for a blood clot, many of the nurses talked to her like they'd always known her -- it was such a treat for Mom. And people would recognize her around the city. Thereafter, I kidded her about being more popular than her chief meteorologist son! We both had fun with it.
But Mom was diagnosed with pancreatic cancer in July of '07 & faced what she eventually called the "toughest fight of my life". The grace with which my mother waged this battle will forever stay with me...my dad's commitment to his wife will always have an imprint on me. All part of a personal journey for me that I believe has changed my life.
I began a journal of sorts shortly after Mom's diagnosis. That journal is reprinted below with the permission of my father -- nearly 50 pages & some 26,650+ words. I was not sure that I wanted to -- or maybe should -- post such a personal journey but after careful & long consideration...& after some consultation with a few close friends...I've decided maybe someone will find some value amongst all the words. Reading it back over for me has been very helpful. I have heavily edited in some places that were extremely personal & replaced names with pronouns or took out the names completely. There will be parts that have misspellings ... are grammatically incorrect or that have the wrong punctuation. Take it for what it is & may it be of some value. This journey for me was not one I wished to take in July of '07 but after many twists & turns, the journey turned out to be priceless. May my beautiful mother rest in peace.
THU. July 12, 2007
I learned of Mom’s illness a little over 48 hrs. ago. I’ve decided to sort of try to chronicle each day or nearly each day. So I’m going back to Tue. afternoon, July 10……….
Mom was to have a cat scan Tue. Morning due to continued stomach issues, a lack of appetite & weight loss. I had told my wife I feared it was something serious, but the phone call still shook me to the core. I was just getting ready to walk out the door to work when I noticed Mom & Dad had called but left no message, so I promptly called. Mom answered & said the “news was not good”. She proceeded to tell me she had pancreatic cancer & “there wasn’t much they could do”. I wept & blurted out that I’d be home the weekend after next. I called my wife on the way to work as she was with the kids at the grocery store. We cried together then I tried to compose myself before entering work.
I called Mom back to just try to talk coherently & see what she knew. I asked about Dad, & she said “he can’t talk”. As I was talking to my wife again – this time in an empty “2nd” studio that was dark – a very good friend – just happened to walk in. It was like God had called him to make a trip over to TV from the other side of the building. This man is active in his church. As I finished my call with my wife, he asked if everything was alright. This was my first complete loss of control – he grabbed me & held me. I told him the news. He held me some more. Two grown men holding one another – one sobbing – in a dark studio…quite the picture I’m sure! Once I got myself together, we prayed together. It was very powerful – I’m confident he’ll be important to me & for me during this process.
I was doing a live weathercast that afternoon, so I went about my business & got through that fine. I went back to the station briefly before going home for dinner & told a co-worker the situation. While I was home he decided to write a brief email to the newsroom alerting everyone to the situation & for their thoughts & prayers. The intention was good, but it’s not really the way I wanted people to find out – especially management. It’s probably good, though, because I’ve had people say some really nice/supportive things & I’ve had some really good talks.
My wife told the kids that afternoon since they saw her bawling. They get it to some degree – especially my 7-yr. old. Both immediately made cards for “Grammy”. We pray for Grammy every night. Tonight I asked my 7-yr. old if she’d talk on the phone to Grammy. She thought about it for about 10 seconds then said “yes”. She asked me if Grammy is coughing, if she can walk around. I said yes & that you really can’t even tell Grammy is sick from the outside. She asked about Grammy’s “room” [hospital room I suppose] – how big is it? I get the impression my 7-yr. old realizes Daddy is very sad. I’m not moping around mind you, but she has a sense.
My wife has come up with a really good idea – her & the kids driving to Iowa in a few weeks – when I’ll be going for a 4-day weekend – then staying there for up to 3 weeks before the kids have to start school. That way Mom & Dad could have fun with the kids, some bonding time & the kids will always remember their time with Grammy as fun & vibrant. Then I will return to Iowa at least monthly depending on how things evolve.
Speaking of my wife, she’s been great. This is one of the reasons I married her. I wanted to get to know her as soon as I saw her behind the camera in Cincinnati….I fell in love with her smile, wit, laugh, smarts & sense of humor…I wanted to marry her because of all those things + I knew she could be a rock. I must say I was correct. I’ve been dumb about some things but picking my partner for life -- & being lucky enough for it to be mutual – was not one of them.
So Tue. was primarily a sad day. Wed. was kind of a mix of sad & mad. I called Mom & Dad early in the morning – they were leaving for Mayo in the afternoon. I got little more than a couple of hours of sleep but worked out & went swimming after talking to Mom & Dad. I found myself doing a few laps then thinking about Mom & slamming the water – must have done that half a dozen times. I then went to a morning meeting downtown at Emergency Management then home for lunch & a shower then to work. I found myself fine one minute then crying the next. Co-workers have been great. I had a good talk with a photographer in the parking lot this afternoon. I sent emails to people I thought should know or who could possibly help me. I’m saving all emails related to this – some of them are very powerful. I was dead tired Wed. night, so I did sleep much better.
This morning – Thu. – I find myself asking why. Upon rising from bed, I came to the realization this is going to be a long ordeal. I told my wife when you have a bad day at work, you can go home & sleep on it & feel pretty good the next day ready to get back at it. But in this case with Mom, a good night’s sleep won’t help. The problem remains. So I find myself asking how it is such a good, moral person like my Mom can be stricken with such a horrible disease. Why should she have to suffer, to have pain. Dare I say it’s not fair – though I know that’s not fair. I find myself not praying as much as I thought I would or feel like I should. I don’t quite know why. I mean I’m praying – just not as intensely as I imagined when this day might come. I want to go to church but time to do so is tough to come by – that’s a terrible excuse but the truth. We’ll be going this weekend. I’ve thought a lot today about what must be going through Mom’s mind. She seems very calm & collected – almost resigned to whatever the outcome might be. I’ve tried to put myself in her position but, of course, 25 yrs. younger. I told her tonight on the phone that I wish I could take out the cancer in her body & transfer it to mine. I do sincerely mean that. She told me she used to say that about me & my sister when we were sick or had troubling times. I can remember that. Mom is such a good person. The most moral person I’ve ever known…the kindest (& the cleanest!). I still have never heard her cuss!! I can see why God would want to punish immoral people with a nasty disease that eats at you from the inside & makes you suffer BUT MOM?!?!?
I do seem to be doing a little better today. I almost feel guilty for that. I have a little more step in my gitty-up. I still am always thinking about Mom & Dad, I have many sad moments, I cry a little. I’m feeling a little numb today. Mom had a bunch of tests today at Mayo Clinic. A biopsy will be done Mon. to make sure the tumor is malignant & Wed. or Thu. will be a meeting with the “cancer Dr.”. I wish I could be with them while they’re in Rochester.
My workplace boss’s have been kind. I had about a 10 minute sit-down with the news director Wed. We shed some tears. I wanted to go in there & be stoic, but I wasn’t perfect. She thinks I need to go home now, but I’m waiting 3 weeks unless the Mayo Dr’s. give us news we’re not expecting.
I’ve felt true heart ache 3 times in my life so far: (1) now…..(2) a “love loss” in my early 20s…. (3) a best friend’s mom’s death when I was in my mid teens. They all have felt just about the same physically. Different mentally, of course. I prayed a whole lot on (2) & (3), so I’m a little confused why I haven’t really taken the same path this time around – at least so far. Maybe it’s because of where I am in life….or maybe a product of it being Mom….I believe I’m as spiritual as ever.
It’s 1:45am & time for bed……………..
FRI. July 13TH
Woke up about 8am & went into the living room. I told my wife I had a neck ache – must of slept on it “wrong”. My wife said she kind of had a headache. I said jokingly I guess it’s not all that bad since we don’t have cancer! She smiled at me & said you have to have a sense of humor sometimes.
I called Dad about 9am & he wasn’t in good spirits. They were meeting with the dietician (diabetes) but Dad stepped out to take my call. He said there’s so much to go over. That they went to bed about 9pm last night in their motel room only to wake up about 11pm & couldn’t go back to sleep. They were exhausted & were having trouble keeping up with all the Dr’s. directions & instructions. I told him I know it’s exhausting & to hang in there. Upon hanging up, I immediately (with the help of my wife) checked into flights to Rochester, emailed my boss for time off next week & once I had her approval, we booked the flight Mon. arriving late in the afternoon & leaving Thu. evening. So I’ll arrive shortly after the biopsy is completed Mon. & will be there Thu. for the “cancer meeting” with the Dr. – not looking forward to that one!
I know what Dad means by being exhausted. I mean this thing just won’t go away. It’ll be staring us in the face at every waking moment for God knows how long. It wears on you – mentally & physically. I feel better that I’m going to see them soon. I fear that maybe staying at a distance was my way of coping to some degree – pretty cowardly. So I’ll be facing the music come Monday & a part of me is very much looking forward to it. My wife, me & the kids will all be in Iowa in 3 weeks.
A co-worker just told me an interesting (& hopeful!) story about a friend’s father-in-law who has pancreatic cancer – was given a poor prognosis but has continued to survive for a year-&-a-half quite well.
SUN. , JULY 15th
It’s not good when you tell people your mom has pancreatic cancer & they sort of wince & follow with something like “we wish you the best….we’re sorry…let us know if there’s anything we can do”, etc. It’s even worse when it’s a doctor or priest.’
Mom’s blood-sugar count finally went below 200 – 180 y’day & 140 today. About 100 is apparently near normal…120 is high. At its worst about 5 days ago the number was 500+. All doctors were stunned at the number. So she’s not feeling as tired now & Dad says she looks better.
Cruel irony: Mom & Dad took part in a “Walk for a Cure” in Toledo/Tama last month – walked around a track for a hour raising money & raising awareness. I can’t help but think the cancer inside Mom was laughing at her – snickering – cells with horns on them…the devil of cells. Cruel irony, part II: I rotate having Christmas off within my office – it’s what I consider fair & give everyone a chance to hopefully have some family time. This is to be my year & my wife & I were going to take the girls to Iowa for a week & have an old-fashioned Christmas at home – a rarity for me since I’ve worked virtually all of them since I graduated from college. I said last Christmas that I’d be counting the days to Christmas ’08. And so what will Christmas ’08 be like now?? Sh*x!
I think about one of my best friends growing up. His mother’s death had a profound impact on me. I was only about 14…my friend 12. His mother died on Christmas Day. It was my first taste of death close to home. It was tortuous for me; it was worse for my friend. Mom & Dad helped sweep him up & he made our home his home many days ‘till college. I’d have to believe that if I told him how sad I am, he’d say – “hey, at least you had your mother into your 40s. Valid point.
So we went to mass this morning. I was disappointed this was the first time since Mom’s illness was discovered. It wasn’t really by choice. Well, anyway when we walked in the choir was playing “Peace is Flowing Like a River” – a favorite of mine + Mom likes it too. In fact, about 7 or 8 years ago when I was home visiting Iowa, the church choir sang the song, & I said to Mom “Isn’t that amazing? They sang one of my favorite songs.” Mom replied: “I asked them to”. The moment & song this morning was pretty powerful. But I found myself tearing up at times throughout mass…I had a hard time praying…hard time concentrating. I don’t like this part of the ordeal – it seems to be testing my faith. But I don’t believe I’ll cave. It’s beautiful to hear my kids pray & to pray for “Grammy”. On the way out of church, I stopped in the gift shop where I bought a pendent for Mom that’s for those suffering from cancer (St. Peregrine), a card & a little marble stone for Dad with a saying about mourning. Father was kind of to bless them for me, & I thanked him with tears in my eyes.
Today is my wife's b’day & we had a huge day. The celebration was a treasure hunt that began late yesterday. We spoke with Mom & Dad while at b’fast at Panera’s.
My aunt called this evening. She stayed with Mom & Dad over the weekend. She said Mom is busy as ever & seems to be taking it all in stride. Dad, however, is not doing so well. This confirmed what I felt from knowing them + from talking with them the last few days. I’ll find out for myself when I arrive in Rochester at Mayo late tomorrow. Packing for this trip I felt like I was getting ready to go into battle. Nothing fun about this plane ride & its destination.
Mon. JULY 16th
Well, I’ve made it to Rochester. What a long yet interesting day. Jax to Charlotte, NC went off without a hitch but my plane was delayed from there so couldn’t make my connector in Chicago. Had to take a later flight out of Chicago but did get into Rochester near 6:30 – only about 2 hrs. later than scheduled.
My sister & I had a nice conversation during my lunch. She seems to be very strong & is happy I’m here. My best friend called during my layover in Chicago – what a great man/friend!
While flying into Rochester, we flew over huge towering cumulus & cumulonimbus clouds. They were spectacular & beautiful. I felt like – if I could put my hand out the window of the plane – God would take a hold of it. He’d lead me…or maybe he was already leading me. I started reading “Season of Life” by Jeffrey Marx & it’s incredible. Has me wondering if I’m headed in the right direction when it comes to what I’m doing. Not with my marriage – that’s great but more with work & helping people…my focus & compass in life. I feel like I try to help others as much as I can within my boundaries as a tv m’gist & its demands, but I feel like I can only go so far & not really all the way. Something to soul-search about. Great verse in the book:
There is a destiny that make us brothers;
None goes his way alone:
All that we send into the life of others
Comes back into our own. (Edwin Markham)
While waiting for my luggage at the carousel, I saw 2 priests. I asked them their faith & they replied Catholic. I’m asked them to pray for my mother; they said they would & one blessed me.
Dad picked me up at the airport. We hugged & talked on the way to the motel – a little about Mom, himself, the weather, etc. I told him he’s got to take care of himself too. When we came into the room, Mom was asleep due to anesthesia from her biopsy. She soon awakened, she sat up & we hugged for, gosh, I don’t 3 minutes or so. I didn’t want to let go. I think she was probably wondering if I ever would! I did quickly notice her eyes & cheeks had become yellow (from jaundice/diabetes) & that her face was somewhat thin but otherwise she looked great & was talking normally. Dad poured me a drink & we talked for awhile. About all the people we had heard from…about praying, etc. I didn’t cry a drop. I can’t explain it! Somehow I had reached a point of a certain serenity. I mean I cried my eyes out at times on the way up here. It all seemed better now. I mean I know she’s very sick & I know there this will be a long & winding road. I know the prognosis might be pitiful. But for some reason I feel o.k. at the moment. Mom is a spiritual, giving & strong woman – it permeates to others around her. So we went for dinner & she ate lots of fruit. We all walked arm-in-arm the entire time. We even played a game of cards – gin rummy – before they crashed. I’m writing this in darkness at 1:45 am after doing some work. Mom’s blood-sugar is still very high – 300 when they went to bed. That can’t be good, & I assume is a serious concern of the Dr.’s. Her biopsy was not directly from the pancreas but rather lymph nodes in the stomach. We assume to try to determine if the cancer has spread. We have a Dr.’s meeting tomorrow afternoon & again Thu. afternoon. We prayed together before they turned in for the night.
TUE. JULY 17th
“When the Lord closes a door, he opens a window somewhere”…….
Apparently we’ve found the window. Doctors today say y’day’s biopsy/ultrasound showed the cancer appeared to be confined to the pancreas. The reason Mom’s blood-sugar is so high is because much of the cancer appears to be within the pancreas & is plugging some of the pancreatic ducts. But there were no tumors on the liver & nearby lymph nodes appeared to be cancer-free. So this makes Mom a candidate for surgery – only 20% of all pancreatic cancer sufferers have such an option. So that’s a positive though the surgery would be major…there’s no guarantee Dr’s. won’t find more cancer once doing the surgery…Mom will always be on insulin. But this is potentially far better than the first diagnosis & what happens to the other 80%.
We are exhausted. We were up @ 5:45am, at the clinic by 7am & didn’t leave until 5:30. Physically tired but also mentally drained. The morning app’t. was with the dietician who went through Mom’s “new” diet. It’s actually not too bad – just have to watch the #’s within all the food groups + carbs. It was pretty interesting really. She did give the impression the tumor was much more of a concern than the diabetes. First thing in the morning we met with a nurse that showed Mom & Dad how to monitor her blood-sugar level & give herself insulin shots. At noon we went to Mass -- & after sitting in the waiting room for 3 hrs., we got the news that Mom’s cancer might be operable. We had a nice dinner & a bit of a celebration – albeit measured – given the many possible complications.
So now we see the “pancreas dr.’s”….the Dr. admitted she was surprised as are most other dr’s. In fact, the “pancreatic unit” is saying it’s an intriguing case study & Mom is the topic of many a conversation not to mention in-fighting about who gets the case! Tomorrow we get up early in an attempt to see the pancreas dr.’s. They’ll possibly do more tests & try to determine if & when Mom would be a candidate for surgery.
- Last night @ dinner, Mom was concerned & sympathetic for a blind woman eating at the table adjacent to us…
- Remarkably stoic. At all times.
- Still puts down my bed.
- Pleasant to everyone…smiles when she meets a stranger
- Primping – does her hair, make-up, etc.
- Has to be early to everything – all appointments…by at least 15 min., preferably 30 min.!
THU. JULY 19TH
So we awoke Wed. morning with renewed hope. We arrived early at the clinic to get on the stand-by list. We were set up to see the “pancreas Dr.” Tue. afternoon but patients can get on a waiting list which is what we did. About 8:45 a nurse came out to tell us “no way this morning, try this afternoon”. So we left & did a bit of shopping, looked at movies & drove by a “Baker’s Square” – a restaurant I used to enjoy in Des Moines – “come for the food, stay for the pie” was the catchy slogan. So we stopped & had pie. In the interim, the clinic called to say the Dr. would see us at 1:15 – great! We had some lunch – have to keep Mom on her “eating schedule”. Dad went to mass ‘cause he had leftovers from Mon.
We got in right at 1:15 & the Dr. checked Mom, asked questions & declared her a good candidate for surgery. He wanted us to see a surgeon as soon as possible – probably Thursday. He told us to wait in the waiting room then came word a surgeon would see us about 3:00. Well, that didn’t happen until 4:30, but it was well worth the wait. First in came the attending surgeon – a young guy in his 30s from Texas but whose in-laws lived in Cedar Rapids, Ia. He was an affable fella. Then in came the “big guy” – THE surgeon along with a nurse. The surgeon investigated the ultrasound then explained it all & followed with the good news: “we think we can operate & get most if not all of this tumor”. We were relieved, smiled & said something along the line of “that’s good”. We all asked a series of questions, & I asked to get a close-up look of the ultrasound, & he explained everything. It’s going to be quite an operation: they’ll take the gall bladder, parts of the intestine then begin with taking the portion of the pancreas that is obviously filled with cancerous cells. Then they’ll start to take a sliver of the pancreas at a time taking each sliver under a microscope to see if they can find cancer cells. If so, they keep taking slivers until they no longer find cancer…once they don’t find any cancer, they’ll stop slicing. If they have to, they’ll remove the entire pancreas which is o.k. The operation is called the “whipple” – named after the Dr. who discovered the process back in the 1930s. Mom will be on insulin the rest of her life but the prognosis is good as long as Dr.’s don’t find that any cancer has spread from the pancreas which would appear to be the case on the ultrasound. The Dr. stressed he couldn’t guarantee that cancer would not return but 99% of patients that undergo this surgery survive but with a 40% complication rate. However, these complications are usually relatively minor & don’t require re-surgery.
The surgeon then took out his calendar & said he was rather busy the rest of this week but could do the surgery next Mon. or Fri. Mom wanted to get it over-with so Mon. it is. All the Dr.’s that came in said Mom looked to be in excellent health. They must see some very sick people + quite a few don’t take care of themselves like Mom. They all said she was more than ready for surgery. It’ll be a 6-7 hour operation (as long as there are no indications the cancer has spread which they’d know early on). The hospital stay is 8-11 days + another 4-6 weeks of recovery at home. It’s “major” surgery, it’ll take a while to heal but things look good. The Dr. believes they can get all the cancer. Mom will have to chemotherapy + radiation but overall this ended up being an incredible day. Mom remained stoic…Dad had tears & I just outright cried once we got out into the waiting room as I hugged them both. Now it was time to split up & go to work – I cancelled Tue.’s appointment…Mom went to fill a prescription…Dad went to the business desk to set up the hospital stay. We then walked to Red Lobster for a “celebratory” dinner.
So it was time for me to figure out what to do. At first I just instantly figured I’d stay through Mon. & fly out that night. Then I’d probably not come to Iowa in a couple of weeks as originally planned due to work & this longer seeming to be life or death. But as I discussed possible plans with Mom she intimated she’d like to see the kids. My sis was already committed to coming for the surgery so that took care of it. I’d fly my original itinerary then fly to Iowa in early Aug. shortly after Mom’s out of the hospital where we’d all be together the first 5 days or so after Mom’s return home.
Mom didn’t sleep well last night. We got up & checked out several motels across from the hospital where Mom will have her surgery – St. Mary’s. The one we liked the most didn’t have anything available Sun., Mon. so we booked that one from Tue. on & booked the first two nights a block down at the Marriott. These places are remarkably flexible with extended stays – goes with the territory I guess. Then it was back to the motel where Mom took a nap & we packed up. Then lunch at – you guessed it – Baker’s Square which included a slice of French Silk pie. Then to the movies – “License to Wed” with Robin Williams. I figured it might do Mom & Dad some good. It was an o.k. movie with its funny moments. I noticed Dad teared up early on when there was a scene about a couple celebrating their 30th wedding anniversary. Then it was off to the airport where I was hoping to catch an early flight & Mom & Dad could get home at a decent time.
Good plan but didn’t work so great as my plane was delayed more than a hour making my connection in Chicago close at best. I landed in Chicago at 9:35…my connector was to take off at 9:36 – completely different terminal – landed in #3 but had to get to #1. I ran through the airport fully expected the door to be closed but it was still open. They were expecting me…they’d checked with American to get the status of my flight – wow! I prayed I’d make it & here I am on the plane as I type. I even tipped the ticket lady $5 & blessed her! What a trip & what a week this has been. I can’t wait to see my wife & the kids. What a powerful last 10-11 days. Topped off by finishing my book “Season of Life” by Jeffrey Marx.
MON. JULY 23rd
Well, what an emotional rollercoaster. We find out today that surgery on Mom didn’t go as hoped. The cancer had indeed spread with at least one “spot” found on her liver. The gall bladder was removed & a couple of procedures were done – new ducts – were “built”. The whipple surgery could not be performed – the cutting out of all our part of the pancreas. Dad called me a couple of hours into the surgery to tell me they were moved to a private waiting room. I guess this should have raised red flags, but it didn’t. It was about 2:30pm when my sis called with the word. Dad could not speak with me, but we did talk this evening a couple of times & he seems to be doing o.k. Mom knows the whipple wasn’t done & is actually pretty cognizant but thirsty. I should be able to talk to her tomorrow. Once I got word, I left work fairly quickly & only returned for the late shows. I made some calls late in the afternoon then took the kids to play a round of putt-putt. Anything to take our minds off things & to keep the kids occupied so as to not let on how much we were hurting inside.
Most everyone I’ve spoken with is shocked if not just “trying to take it all in”. It’s strange but I find certain people make me cry just about automatically but others I can converse with just fine.
I knew this could happen & I had prepared myself to some degree, but I was optimistic. I’ve said it before & I’ll say it again – it’s not frickin’ fair – Mom shouldn’t have to suffer & Dad shouldn’t have his heart yanked out of his chest like this. I know…whoa is me. People have it much rougher in this world.
And I’ve had some terrifically powerful moments in the past couple of weeks. For that I’m very grateful. From this I will grow…from this I’ll be able to help others in the future.
My oldest daughter knows the surgery didn’t “work”. She’s quite matter of fact about it but is obviously sympathetic with me. She asked me at bedtime what the Dr.’s will do next for Grammy. What happens now. My youngest doesn’t know yet & will be very upset. She cried for a good 10 min. y’day when we were all in the car & were talking about how the surgeons would cut on Grammy to get out the bad stuff. This “cutting” did not sit well with my youngest. It pains me that the kids will not probably know Grammy for much longer. She has such wisdom to offer…I picture them baking together as they got older…Mom spoiling them…praying with & for them…encouraging them.
My feelings are very mixed & range from anger (a lot earlier today) to sadness to anxiety. So many things to do. What about my first Christmas home in so many years? I probably should have started a family earlier. My kids would have so much fun with Grammy as they grow up…would love her so dearly. Mom has so much more to offer yet. Crap.
Time to shut it down tonight – 2:15am. I have an appearance at 10am – 400 bank rep’s – all about hurricanes. Actually talking about something I enjoy talking about & know about is something I’m looking forward to & something to keep me busy. At least we’re in a pretty interesting weather pattern!
“Some of God’s Greatest Gifts are Unanswered Prayers”…..Somehow, somewhere I guess there’s a “gift” in all this.
TUE. JULY 24th
Tough day today. I have this gut ache.
I realized by late this afternoon that I hadn’t yet talked to Mom. By this evening I felt like I was avoiding the call. Which was probably the case. “Everyone” had talked to her already – family, relatives & friends. I spoke with Dad about noon & there wasn’t a whole lot of news. Finally my sis called about 7pm. Dr.’s are not optimistic. I told my sister I was “mad” & cried. This is the first time she broke down with me. She said Dad told her that he hoped “they would at least have a nice Christmas”. That’s so frustrating; I started counting the days to this Christmas last Christmas since I’d be coming home for the first time in years…hoping the kids would see some snow. I told my sis we must start to think about planning a funeral with Mom. I want it to be a celebration & we have the time to make it one. She says wait until the next ultrasound which will be after the 2nd round of chemotherapy. Speaking of which…here’s what Dr.’s say:
- Mom’s cancer is fast-spreading
- But it’s possible that the cancer did not spread to other areas of the body until the last 2-4 weeks. That’s the kick in the teeth. 2-4 weeks?? We were that close to catching this thing in time?!?! So is this God at work or the Devil? That infuriates me, & I’m battling much more anger today than past days.
- Y’day’s surgery included 2 by-passes. One for the stomach for future digestion & one for the pancreas for the production of bile.
- No organs were touched in the surgery once cancer was found on the liver because it risks causing damage + the possible rapid spreading of cancerous cells.
- The tumor in the pancreas is about the size of a lemon. It’s probable that the cancer is in more places than just the pancreas & liver.
- Chemotherapy is not a cure
- Chemo treatments will begin in about 4 weeks & will involve once a week for 3 weeks then a week off followed by another 3 weeks at once a week. Then an ultrasound to see how the tumor is reacting. If no sign that the tumor is shrinking, chemo will be stopped & it’s on to the “next step”. Whatever that means.
I spoke with Dad after talking to my sis. I was fine with him until I told him I’d try to call Mom soon. At which point he also cried. We said our good-byes.
Finally a little before 9pm I called Mom’s room & spoke with Mom for about 15 minutes – mostly small talk. She did mention something about being the surgeon being disappointed about not being able to do the “whipple” procedure. I said we were all disappointed. She also later mentioned it was better that I was with them last week vs. this week. I think I responded with something like I wish I were there. At the end of the conversations I said “you know I love you.” She replied in kind. Her voice is raspy from the tube down her throat. She didn’t sound real good but appeared to be in good spirits. I couldn’t imagine knowing that your time is limited…seeing certain people for the last time, seeing certain things for the last time, knowing some things you took for granted just a few weeks ago seem so critical all the sudden.
My oldest daughter was cute this morning. She found “The Lord’s Prayer” in her little children’s bible – Matthew, VI. I didn’t even know that’s where it was. But we pray “The Lord’s Prayer” every night & apparently it’s hitting home with her. Anyway…she pointed this out to me in the bible & proceeded to read it aloud. I told her she should say that to Grammy on the phone sometime. Then tonight while saying prayers she added “May Grammy be on earth longer rather than shorter”. Sun. night she crossed her fingers for Grammy while we prayed.
I’m struggling today. Not feeling so mighty, so strong. Not feeling that point of serenity I seemed to reach for awhile last week. I assume there will be many twists & turns; peaks & valleys. I have to believe I’ll be stronger & a better person in the end. A better husband, father, son & friend. That I’ll be able to reach out to others. That I’ll be graceful through all this – especially in the end.
“Comes the Dawn”
After awhile you learn the subtle
Between holding a hand and chaining
And you learn that love doesn’t mean
And company doesn’t mean security
And you begin to learn that kisses
And presents aren’t promises
And you begin to accept your defeats
With your head up and your eyes
With the grace of a woman, not the
grief of a child,
And you learn to build all your roads
On today because tomorrow’s ground
Is too uncertain for plants, and
A way of falling down in mid-flight
After awhile you learn that even
Burns if you get too much
So you plant your own garden and
Your own soul, instead of waiting
For someone to bring you flowers.
And you learn that you really can
That you really are strong
And you really do have worth
And you learn and learn…and
With every goodbye you learn.
WED. JULY 25TH
Dad’s birthday today – some b’day, huh?? He seemed to make the best of it. My sister got him a cake & they went out for a nice dinner.
Mom sounded much better on the phone this evening & is eating some soup & yogurt. Dr.’s were worried y’day she wasn’t producing much urine but doing better in that department today(!). She walked no less than 8 times today. Dr.’s apparently are concerned about medication – Coumadin – from a blood clot she had back in early Jan. They’d like to see her off that medication prior to chemo so an ultrasound has been scheduled to check out the clot.
Doctors are also concerned about our family history of cancer so are encouraging Doreen to be extra vigilant. I assume the same goes for me to some degree though they’re especially warning my sis.
I seem to be gradually going back to a better place. Harry Dates writes me today & includes a quote from a book: “A man will eventually be measured for his courage”. I haven’t been very courageous the last couple days so time to stand up I guess.
We’ve decided to start our drive for Iowa Thu. night, the 2nd of Aug. about midnight after I get off work. That should put us in Iowa about midnight Fri. night. I’ll fly back via Moline the following Wed. Already have a tentative long weekend in mid Sept. – tropics dependent though will go the following weekend if I have to. My best friend has said he’ll plan on meeting me from NYC – that’s awfully cool. What a great friend for whom I’m eternally grateful. Work is allowing me to used banked sick days for when I need to miss work to go home. That’s huge as I have 30.5 days coming to me. Of course, that’ll change when we have new ownership, but I’ll jump off that bridge when I have to.
People are telling us stories about remarkable recovery – or at least remission from cancer including pancreatic. Like Dad says, “you never know”. And Mom did respond well to chemo. for her *** cancer nearly 20 yrs. ago. But I’m going to try to take an even keel – I think that’s why Mon.’s surgery & news hit me so hard.
FRI. JULY 27TH
Well, “hurry-up & wait” mode. Mom is doing relatively well but had a rough night last night. The morphine drip was taken out, & she was in quite a bit of pain at night ‘til she finally(!) asked for some pain medication at 3:00am. She had to take the pills with a cup of apple sauce which she said didn’t settle too well – she has had very little food since Sun. -- & she doesn’t imagine having apple sauce anytime soon again. She did end up sleeping better, though & on-&-off today.
It would seem Mom & Dad have a pretty good grasp of things – cautiously optimistic but realistic at the same time. Dad told me today that they talked about how things “might not go so well this week” before the surgery. Dad said we had to stay strong for Mom…I told him he had to stay strong too no matter what the outcome. He agreed.
My sis, on the other hand, scolded me today for talking about planning Mom’s funeral. Yes, I’ve always been the realistic one so what’s new. I believe Mom will tell me when she’s ready to do such as will Dad. In the end, I envision -- & hope – we all plan & organize in advance & make it a big celebration…that’s what Mom deserves & think would like. Maybe we will have years yet but we’re uncertain. In fact, Dr.’s have not been particularly positive. The chemotherapy only prolongs life, it’s not a cure. Radiation is no longer an option since the cancer is not isolated to the tumor on/in the pancreas.
An ultrasound was done yesterday on Mom’s legs to check on the blood clot from early Jan. Dr.’s would like to get her off the blood thinner if at all possible before starting chemo. Of course, now all wish the surgery would never have been done since she’d be able to already be on chemo but hindsight is 20-20. I was curious as to why the surgeon didn’t go ahead & remove the tumor on the pancreas since he was in there & apparently it’s because such an invasive measure can do harm than good once the cancer has spread. It’s akin to shaking a wet tree branch causing water to spray all-around – same thing happens when you mess with cancer that is already spreading.
Dad did mention today that he’d like to play some golf when I come up next week. That’s a good sign. I already have taken off Sept. 14-17th to fly home (will go the following weekend if hurricane “get in the way”). Mom & Dad don’t know it yet but my best friend will be flying in too. I think that’ll be just great. It’s the Iowa-Iowa St. football game Sat., so maybe we’ll see if Dad wants to go – could be a good diversion though it would take away quite a few hours from being home & Mom would be there alone. We’ll see.
Mom's best friends from Fl. are flying to Iowa about Aug. 21 for a week. That’ll be good too – about midway between my wife & the kids leaving & my sis & her husband coming for Labor Day. That tells me Mom wants her closest friends & family to visit sooner rather than later. She must sense that time might be of the essence. I’ve already taken the last weekend off in Oct. to fly home at which point an ultrasound should be completed telling us how the cancer is reacting to the chemo. I’m then hoping to be able to hold off ‘til Christmas week when the whole family will fly out…but time will tell. Luckily, work has been excellent about affording me the time off, & they’ll let me use my bank of sick days for time off directly related to Mom.
Dad, sis & her husband did take Mom to the chapel today at St. Mary’s Hospital – apparently a thing of beauty. I know Mom enjoyed that. They also took her outside for some fresh air for awhile. My sister & brother-in-law are planning on returning to home Sat. unless Mom gets released, but we get the impression she’ll have to wait until at least Sun. ; in fact, she told Dad today she’d rather wait at least a day.
It’s so cute to listen to the kids talk to “Grammy”. My youngest last evening told Grammy she wanted her to get better real fast…that she couldn’t wait to come to Iowa…and that she loved her so much. How precious & it quickly brought tears to my eyes. My oldest seems to understand the enormity of the situation, but is taking it very well. She’s been reading her little bible & even found the Lord’s Prayer (on her own) – one of my favorites & a prayer we say every night – in Matthew VI. She read it aloud to us a couple of days ago. It’ll be a grand & powerful few days with Grammy & Grampy beginning next weekend – obviously some sad & poignant times but therapeutic & good memories too.
SAT. JULY 28TH
It can be difficult to enjoy some of life’s indulgences when you know Mom & Dad are loaded down with such a cross. This morning, for example, the whole family went to the beach. Just didn’t seem quite right. I know you can’t just stop living at times like this, but it does seem unfair for Mom & Dad to have had their lives so abruptly altered.
My sister seemed to come crashing to earth today when she had to say good-bye to go back home. We talked for a half hour or so while her & her husband we’re driving, & I think she understands time with Mom might be shorter rather than longer & planning for such might be a good idea then we can just enjoy whatever time we have left.
Mom’s ultrasound came back o.k. so she’ll be put back of Coumadin – a blood thinner. I guess I was mistaken that Dr.’s would like to see her off the stuff. Apparently chemo. patients are more susceptible to blood clots. Chemo. will not begin for 4-6 weeks yet – yikes! Mom & Dad did go to church this afternoon – apparently the chapel at St. Mary’s is large & beautiful. Mom will enjoy that. Dr.’s are still trying to get that blood sugar under control & have increased her insulin shots back to where they were prior to the surgery. Looks like Mom will be released tomorrow.
My youngest daughter was awfully cute praying before dinner today. “Help Grammy to get to feeling better…help Grampy to get unsad.”
SUN. JULY 29TH
“Death is a part of Life”…….
Heard this line in a tv show my wife & I were watching this evening. I hate to think fatalistic when it comes to Mom’s illness, but it just doesn’t look real good. Tonight Mom told me she as having some vision problems due to the diabetes.
But Mom was released from the hospital today & her & Dad returned home late in the afternoon. Mom ate a pretty good dinner – a miniature maidrite from the “Big T”. She said it was pretty good so hopefully she regaining some appetite & food is tasting better. She’s a “chocho-holic” but since the symptoms kicked in hard a few months ago, Mom has had no chocolate.
When they arrived home in Toledo there were 3 yellow ribbons in the yard – one around each light on either side of the garage + 1 around a tree in the front yard – pretty special & only in small town Iowa. Speaking of kind gestures…A friend of a co-worker whom I only casually know (golfed with him once or twice) called the weather office this evening for a personal forecast but then went on to offer his best wishes for Mom & that they had started a prayer circle at their church – pretty darn nice! So that’s somewhere around 7-10 prayer circles that I’m aware of. Powerful…not matter how things turn out in the end.
So now it’s sit back & wait…”heal time”. Sort of a frustrating time as we have to put off chemo. treatments until Mom has healed from surgery. I wonder if this part of it frustrates her: heal so you can be better prepared to die. To have difficult chemotherapy. I know, I know…not very optimistic on my part.
It’s frustrating knowing that Mom won’t likely see my daughters grow up…to have her to help mold them – what a great example she is & would be for the kids. I’ve often fantasized about my daughters in the kitchen with Mom learning how to cook & bake. Making a mess while Mom cleans up right behind them. That’s the risk I took by getting married later in life & waiting to have children. Gosh, by the time I was 40 Mom & Dad were but in their mid 60s – literally spring chickens when I graduated from High School & college. Which is probably what makes this even more difficult – I was already an adult (usually!) when they were only in their 40s & 50s. Me, on the other hand, I’ll be near or a little over 60 just when my daughters graduate from college. You want good people around your kids as they grow up. Not having Grammy would be one less of the “good people”.
WED. AUG. 1ST
“One way to get over your own problems is to listen to other people’s problems.”
That’s a quote from the movie “Straight Talk” which my wife & I were watching this evening over my dinner hour. Then we literally saw other people with big problems too – tragedy in their lives…a huge bridge collapsed in Minneapolis, MN.
Well, Mom pooped today! That’s a big deal since it’s the first bowel movement since her surgery – more than a week ago. She needs to poop! This could become an increasing concern if she doesn’t become more regular.
So it’s off to Iowa tomorrow night. We’ll hopefully be on the road by 12:30am or so. Long haul. And my little “safe haven” – distance …my comfort zone…my coping mechanism – will be destroyed by Fri. night as we arrive in Toledo. I’m not sure what to expect, but it’ll be packed & lots of people will visit I’m sure. Dad says he’d like to get out for a round of golf, so we’ll try to get that in.
On a much lighter note…the Farmer’s Market will be teeming with home-grown fruits & vegetables – corn on the cob! My wife & I are both looking forward to that.
My wife booked my flights for mid Sept. I got good flights – times & location – in early in Cedar Rapids on Fri. & out late out of C.R. Mon. Dad told Mom I’m coming in Sept. too. We hadn’t told her yet. We don’t want to make it to look too much like we’re already planning the “swan song”.
But truth is haven’t heard or read a lot where there’s a lot of hope once pancreatic cancer has spread. The low end for survival is 6 mo….the high end 2-5 yrs. As I’ve said many times the last few weeks: “It is what it is”….”Life is full of twists & turns”. Ah…heck I don’t know.
WED. AUG. 8TH
So here I am in the Quad Cities Airport after a 4 ½ day stay at home in Iowa. Dad just dropped me off & my plane takes off in a little over a hour…fly to ATL for pretty short layover then on into Jax. My wife & the kids will stay for about another week.
Let’s start at the beginning. We left Jax at 12:30am Fri., the 3rd…drove straight through & “landed” in Toledo at home at midnight/EDT or 11pm CDT. All things considered the road trip wasn’t all that bad – yes, it took 23 ½ hrs…we had one short “blow up” in the van but after 1,366 miles – it was long, bordering on hellish but not all bad with some beautiful scenery & interesting family moments. I did have some leg pain the next day from being cramped the last 4 hrs. in the passenger seat while my wife drove but that quickly went away.
Mom was awake when we arrived & looked pretty good. Dad was happy to see us…the kids were awake & we all chatted for about 30 min. before crashing into a deep sleep – at least me, my wife & the kids. Mom is not anywhere close to sleeping through the night which causes Dad to toss & turn though neither one have ever been what I’d call good sleepers. Before going to bed, I told Mom I’d be returning in mid Sept. but with someone other than my wife. They guessed my best friend which is correct, & they we’re very touched. Indeed his trip to Iowa might be one of the greatest acts of kindness I’ve seen from a friend.
We awoke early Sat. & the kids – as has always been the case when we visit Grammy & Grampy – immediately went into Mom & Dad’s room. This is when Dad tells them stories & plays monster on the bed. That tradition continued on this trip but was a little different in that early in the morning Mom always pricked her finger to get her blood sugar count & Dad gave her the shot of insulin for her diabetes.
Mom’s typical day consists of getting out of bed, showering, breakfast then resting and/or napping. Then she’ll get up, have lunch followed by another rest/nap…then dinner…another rest/nap…then maybe some cards then to bed. It’s strange & a little difficult to watch her not have much energy – I mean she’s always been the “energizer bunny”…to see how thin she is…& for not to want some of her favorite things like chocolate, coffee, the TV or – sometimes – receive a phone call. We did have visitors on a daily basis – some stayed too long, others were just about right. Neighbors, friends & relatives constantly brought food so there wasn’t a lot of cooking to be done. My wife picked up the slack for a mom that used to do everything. I’m so proud of her but most of all I’m so grateful…I’m so lucky. Sometimes I wonder if I deserve such a wife, but that’s typical of my mindset. For some reason I often wonder if good fortune that comes my way is deserved. It’s conflicting sometimes…maybe because I don’t lead as clean a life as I should or because I wonder if I’m selfish – less of a spouse, friend, son, brother, etc. I hope not…I try not to fall short but for whatever reason it’s hard for me sometimes to accept accolades, compliments, etc. I’m always surprised when someone – other than my wife, Mom, Dad & sis cares for me.
Mom has continued to lose a pound a day though did better Mon./Tue. when she held steady but then lost another 0.6 lbs. today. She is eating pretty well & seems to be regaining at least some appetite. Her good nights of sleep come & go. She ran out of her pain medication Mon. & has switched to Tylenol PM but if I were her I’d be calling for a refill of pain med’s. She’s always positive though & doesn’t want to get dependent on medication to fall asleep. She’s happy when she can quickly to sleep & stay asleep for about 5 hrs. like she did last night. After the 5 hrs., she only sleeps on-&-off.
We were treated on this trip to all the fresh veggies, fruit & corn that come with this time of year in Iowa. That was great! Mom seemed to enjoy some aspects of the fresh food but wasn’t so hungry for some other types. She does seem to be enjoying the kids & our youngest sure does want to get in her lap. But instead she’ll sit or lay next to her. Our prayers at the table over food are always entertaining with a mix of thanks for a large combination of this & that.
As for Dad…I was quite proud of him, & he sure has seemed to come to grips with things as well as can be expected. He tears up sometimes when people ask about Mom but has a sense of reality. We talked a bit about their burial site which they’ve already picked out…he wants to pick out a headstone which they had planned on doing for a number of years now…but that had not – to my surprise – talked at all about a funeral (for either one). I told him that’s something we might want to discuss “on down the road”. Dad seemed to very much enjoy having all of us around. I got him out to play golf Mon. morning which resulted in the usual laughs. We played several games of corn hole & managed about 6 games of pepper. Dad took me to the airport in Moline this afternoon. Despite a 2 hr. trip he didn’t have a lot to say or share. I pumped him some…asked if he needed anything…would like me to do anything & replied “no, you’ve done enough already”. Hell, I feel like I haven’t done a darn thing.
I got to visit Grandma just about everyday, & she’s doing very well. She’s upset, disappointed & concerned about Mom & Dad. But the nursing home is treating her well & vice-versa.
The amount of concern, well-wishes, etc. is amazing in the small town. So many are praying & if prayer can indeed make a difference, it would seem this is one of those times. But I know God has a plan & doesn’t all prayers as we necessarily wish…”Some of God’s greatest Gifts are unanswered prayers”. My wife & I love the small town, rural ambiance & I think if we could find the right nitch, we’d move to a small town or at least smaller town. Maybe in a few years I’ll look for a smaller market job.
Church was – as I expected – emotional Sun. morning. Lots of people coming to talk to us & a lot of prayer. A classmate that I didn’t know all that well but who Mom & Dad have gotten to know well the last few years once he joined the church. I was so impressed with him & his well wishes for Mom. I saw a friend of the family whose husband just died. I hugged her & gave my condolences &, of course, she immediately responded with her concern for Mom. Her daughter thanked me for the card & also expressed her concern. It was nice to be in church with Dad.
One unfortunate set of circumstances this past week was the death of a family friend from pancreatic cancer. He’d offered a couple of weeks ago to talk to Mom if she needed to. He only lived another couple weeks but did live 2 yrs. once he was diagnosed. I bumped into his youngest son in the restroom at the Country Club Mon. morning & offered my condolences; he followed with the same for me regarding Mom & then said “it sucks”. I replied “it does suck”. We shook our heads & went on.
So overall I think Mom & Dad are doing reasonably well. Dad has had & is clearly having his heart broken. But he does seem to have come to the understanding he’s had at least 48 great yrs. That’s something to be thankful for. Mom is unbelievably stoic & steady. I can’t quite figure it out. I’m sure she’ll give me some insight in the coming months. But she seems very much at peace with the circumstances. I can only narrow down to this:
(1) When diagnosed with aggressive *** cancer 18 yrs. ago, she was only given 6 mo. to live. So she’s had 18+ yrs. she wasn’t suppose to have & she’s o.k. with that.
(2) If she beat cancer once with chemotherapy, maybe she can do it again.
(3) Or maybe it’s as simple as “it’s in God’s hands”.
Or possibly a combination of the three. But she’s either putting up a great front or has few qualms with the situation. It’s not that she’s resigned to the situation…just at peace with it. Never once did I see her shed a tear until I had to leave. And even then it was mostly me doing the crying…she had but teary eyes. I’ve heard a lot recently about taking on challenges with grace. She’s the epitome of grace. I should take notes!
FRI. AUG. 10TH
From my dad in an email this evening:
“As Mom and I were walking this evening, she made the comment to me that
all the kids are coming to see me before I die, and I said you have to
know this is a serious cancer and we have to have a positive attitude. I
would say this was one of her bad days and they will come & go. She wish
she could start chemo already, but she knows she has to wait.”
I said to my wife a few days ago that Mom will wake up one of these days & say “I have a bad cancer, & chances are I’m going to die”. The ol’ sudden realization after being so strong for so long. Maybe her comment to Dad is a product of such. I wonder if deep down she’s grieving. I hope not. Just like I never want her to be any pain…to never suffer.
THU. AUG. 16TH
My wife & the kids made it back home tonight – that’s a load off my mind. Glad to have them back.
My niece left Iowa this morning, so Mom & Dad have the house to themselves for the first time in nearly 2 weeks. Of course, they’re still getting lots of visitors & the good friends arrive Tue.
Interesting conversation with Mom yesterday on the phone. First she told me she was glad their out-of-state friends were coming because she was worried that she’d never see them again. Then she went on to tell me that there are lots of people praying for her & that if the prayers “don’t work” then God had other plans. It’s the most frank & most personal she has been with me. Sobering, but I like understanding how she’s feeling.
Mom has gained a bit of weight – 1 lb. the last 2 days. That’s the first weight gain in nearly 2 months. It seems her blood sugar level has stabilized & overall she seems to be doing better…sounds better on the phone. They have several appointments at the end of the month – Aug. 29th & 30th – at Mayo in Rochester. It’s hoped that the chemo. can start shortly thereafter.
There’s no doubt that being far away…busy & working a lot is my coping mechanism. It’s so easy to bury myself in work. I can only imagine how different it is for Mom & Dad. I mean it’s just the same darn thing every day, & they have to wait to start these treatments. They check Mom’s blood sugar twice a day…they take short walks…people call & visit. At the same time chances are the cancer is spreading. We know it’s not getting better. I felt guilty a couple of days ago when I realized how much I had separated myself already from the situation. I guess that’s life. You keep on going & doing. I’m looking forward to flying out in mid Sept.
SUN. AUG. 19TH
“God will make a way when there seems to be one way,
He works in ways we cannot see, He will make a way for me.
He will be my guide, hold me closely to His side,
With love and strength for each new day,
He will make a way, He will make a way.”
Pastor Michael, Deermeadows Bulletin
Mom & Dad went to the neighborhood block party last night. Mom even made a salad, stayed for dinner then went home. Dad stayed a while longer. Mom gained a pound – which means her net weight gain/loss the last 3 days is 0. They’re still getting lots of company but no one is staying with them right now. Good friends of Mom & Dad's arrive Tue. I think they’re (like all of us) counting the days to Mayo in Rochester (Aug. 29-30) then the days to the beginning of chemotherapy.
I spoke with Pastor Michael this morning – first time since the day before the surgery. He requested that I let him know how things go which I did in an email, but he didn’t recall receiving such. I had told him the story about “Peace is Flowing Like a River”…think I’ll resend. Anyway, he was obviously touched & saddened by the news that the cancer had spread.
MON. AUG. 20TH
First day of 1st grade today. I can’t help but think it might be the last time Mom is alive to see their first day of a new grade. I know that sounds fatalistic, but I can’t help it. I asked my oldest to please call Grammy after she got home from school. My oldest did but then when Grammy told her it sure was nice that she called, she replied “Daddy told told me to.” Oh well. I really do think she meant well. She prays for Grammy every night just like my youngest. I think the hardest part for my oldest is understanding why it’s taking so long for Grammy to get better…for my youngest I think she forgets Grammy is sick which is very understandable.
My parent's Fl. friends arrive tomorrow evening.
THU. AUG. 30TH
Mom & Dad just returned from Mayo in Rochester after 2 days of tests, follow-ups, etc. A catscan was taken – I encouraged Mom & Dad not to bother with what it showed since we know it won’t be any better & probably worse. It’s simply a baseline for 2 mo. from now when another one will be taken to see if the chemo. is doing anything. But they did choose to see it & indeed the tumors had increased on the liver. They were officially told today that the cancer is pancreatic, “stage 4”. No surprise really. It’s just more confirmation of what we already know.
The Fl. friend's visit seemed to be really good for Mom & Dad. They played lots of cards, Mom is eating better & doing better. She sounds on the phone more like herself. The biggest problem seems to be not being able to sleep at night. She has received some sleeping medication but isn’t doing a whole lot apparently.
The chemo. will be done in Waterloo so at least it won’t be a long drive – once a week for 3 weeks, week off then another 3 weeks. It’s at that point that another catscan will be done so probably early Nov. which doesn’t coincide well with my schedule. I’ll be home the last few days of Oct. but can’t stay into Nov. because of the ratings period (unless, of course, Mom takes a real turn for the worse). I’d very much like to be with them when the next catscan is done.
My youngest sure was cute tonight on the phone with Mom…asking her multiple times how she’s feeling then when saying goodbye saying “see you at Christmas”. It was both heartbreaking, cute/sentimental & encouraging.
We’re off to Washington D.C. tomorrow through Mon. – Labor Day to celebrate my wife's parents 40th anniversary. My sis & her husband will be home for the weekend & it’ll be my sis's last visit until T’giving.
MON. SEPT. 10TH
Mom had her first chemo. treatment last Thu. & all seemed to go well. I sort of get the impression that Dr.’s don’t feel there’s really much hope. More frustrating is that yet another Dr. (the one administering the chemo. – same one as 18 yrs. ago for Mom’s *** cancer!) has told Mom & Dad that the blood clot back in early Jan. probably was a telltale sign of cancer in her body. That’s all rather deflating & frustrating. Mom has developed a clot on her right leg. She didn’t tell the Dr.’s & I guess Dad forgot when they were at their appointments last week, but it was getting too bad over the weekend, do Dad made an appointment today. An ultrasound revealed a “superficial” clot which according to the Dr. is “nothing to worry about”. But it is very sore for Mom. They go to the “chemo. Dr.” tomorrow so Mom will get a recommendation from him. I know she does not want to stop the chemo. treatments which is maybe why she didn’t say anything to the Dr.’s last week. I also wonder if she’s just so tired of seeing Dr.’s, having appointments, getting pricked, all the fuss, etc. She did tell my sister (while she was home for Labor Day weekend) she was tired of all the shots. I mentioned to my sis I thought Dad was sounding a little depressed the last few days…she has picked up on it as well. I guess he’s quite bored at home…frustrated, too, I imagine. Can’t blame him. Mom does seem to have taken the first chemo. treatment well & she’ll get a single dose each of the next 3 Thursday’s then a week off then another round of 3 treatments & so on. They have to travel to Waterloo for these – not too bad a trip though the last few months could involve bad weather.
So I’m headed home in a few days as long as the tropics “cooperate”. This is the weekend that my best friend will be coming down too. Very much looking forward to this trip & so is Mom & Dad, I believe. My friend & I will try to get Dad out on the golf course &, of course, there will be corn hole. We’ll try to entertain Mom if she feels well enough. My friend likes “Up & Down the River” (card game)…plus Iowa plays Iowa State. I fly in Fri. morning & out Mon. afternoon – Cedar Rapids.
I have obtained a copy of “The Dance” by Garth Brooks. That’ll be the “cover song” for her DVD that’ll contain pic’s & video. My sis will send a few pic’s. I don’t plan on a lot of pic’s…more video but the whole thing only about 5-7 minutes. I’ll try to get that done before Christmas.
This is a tough time as we’re sort of in “no-man’s land”. We don’t know if the chemo. will work at all…Mom is feeling so-so…Dad is unsure…the weather is turning much cooler in Iowa…fall will be settling in, & I can’t help but fall into that metaphor that I grew up with regarding the seasons – fall is old age then there’s the death of winter.
Mom did actually go into work yesterday! She did some paperwork – only a few minutes. But the desk light was still on. So many will miss Mom when the good Lord calls her home.
The kids were cute praying tonight. My 4-yr. old: “make that line on Grammy’s belly (& she pointed/gestured with her finger) better.” 7-yr.old: “Make the spot on Grammy’s leg better & take the cancer away forever”.
MON. SEPT. 17TH
Just returning now from my “reconnaissance mission”. All seems relatively well with Mom & Dad. There’s some sniping between the two at times but nothing unusual. Dad no doubt is getting stir crazy but hasn’t seen anything yet once winter arrives. Speaking of which…dropped to 30 degrees Sat. morning but was 85+ Mon. afternoon!
Mom looks a bit gaunt as her weight just won’t increase much. Overall, though, she’s definitely better than 5 weeks ago when I was last home. She’s battling a couple of “superficial blood clots” but applies heat & elevates her legs occasionally which seems to be doing the trick. She’s anxious about out-patient surgery she’ll have Wed. to implant a port in her chest for the administration of chemo. She told me she’s “tired” of having anesthesia which I can understand. She also heard an 80-yr. old lady last week complaining that the procedure was “more” than she expected. But Mom does want the procedure done. Once the port is in, Dr.’s will no longer have to *** her veins to administer the chemo. Thu. will be the last treatment of this “round”. I’m curious about the next cat scan as we were told by Mayo that the cat scan would be done after 2 rounds – 7 weeks, in other words. This would time out to be the week before my next scheduled trip to Iowa which would be good timing. But the chemo. Dr. in Waterloo hasn’t mentioned this cat scan – I told them to ask about it.
Mom is still tired but not bad & does a fair amount around the house. Her voice is strong, & she’s eating pretty well. Dad is clearly bored & anxious…maybe at times depressed though I didn’t really sense he was terribly depressed. I asked multiple times if there was anything they needed or if there was anything I could do for them & every time the answer was “no”. I do think they were genuinely happy I came home for the weekend. My best friend drove in Fri. night & left Sun. afternoon. What a genuine act of kindness, & I’ll forever be grateful. We got Dad out to golf Sat. morning…played plenty of corn hole & lots of cards.
The “food tree” is working great. Mom continues to feel “guilty” about people bringing food to which everyone has said “that’s ridiculous”. Yesterday Dad grilled chicken breasts, & I made mashed potatoes – good meal & fun. Of course – while Dad & I were visiting Grandma – Mom decided to peel the potatoes, marinate the chicken & get the bag of peas in a pot. So she’s definitely doing better. She did bring death up rather passively a couple of times but no “discussions” really came of it. I’d like to wait for that cat scan before bringing up the funeral stuff though I’ll talk to Mom one-one-one when/if I get the opportunity. I get the impression death and/or funeral is the last thing Dad wants to talk about, but I could be wrong. I don’t know how much the two of them have discussed things. Maybe next time I go home, I’ll initiate some “frank talk” between the 3 of us.
It was a pretty weekend – hummingbirds fattening up for their annual trip south…squirrels carrying & burying nuts…corn & soybeans turning brown but appearing golden in the sunlight…combines scattered about the rural landscape…local talk of the coming fall & winter, etc. All seemed pretty normal but, of course, it isn’t. Mom & Dad do seem to be coming to grips with the situation as much as such is possible. They have lots of friends coming & calling, & it takes at least 5-10 minutes to get into church & 20-30 minutes to get out. As of this afternoon, Mom has received 236 cards!
SAT. SEPT. 29TH
Mom’s outpatient surgery a week ago Wed. for the port went o.k. though it did have to be done twice because the tube was bent after the first attempt. Mom became very black & blue afterwards but said she wasn’t “overly” soar. She even had the chemo. administered into the port the next day. She had her 6 stitches removed this past Wed.
Both Mom & Dad seem to be in pretty good spirits. I think Mom is feeling quite well & Dad is following suit. The weather has been pretty nice too. Dad set up a “puzzle room” off the living room with a t.v. because it’s hard for Mom to rest with the t.v. on. That’ll especially be good in the winter. Mom went to bridge club (a group of women that gather for 3 hours but actually only play cards for maybe an hour!) Mon. night. That was a pretty big step for her, & it sounded like she really enjoyed it. Just a couple days later – on Wed. – Mom & Dad went to the casino to play some bingo. So they’re getting out & it seems Mom is having more & more energy all the time.
Mom started today an experimental oral drug that costs a ton & for which insurance only pays a portion. We’ve heard good things about this drug & the thinking is “what the heck…what have we got to lose?” It’s called Tarceva & was approved by the FDA in 2004. Here’s what I found on their website regarding the drug:
Q. What is Tarceva?
A. Tarceva is a pill taken by mouth once a day to treat your cancer. Tarceva is used for patients with advanced NSCLC who have received at least one previous chemotherapy regimen that did not work. Take Tarceva at least one hour before or two hours after eating
Q. How does Tarceva work?
A. Tarceva is a targeted cancer treatment. Unlike many traditional chemotherapies, Tarceva affects certain cancer cell activities. Tarceva is designed to block tumor cell growth by targeting the protein in your body called the Human Epidermal Growth Factor Receptor 1 (HER1/EGFR). This protein is important for tumor cell growth in NSCLC.
Q. What are Tarceva's benefits?
A. Tarceva is an FDA-approved targeted cancer therapy clinically proven to help some NSCLC patients live significantly longer. In addition to improving survival, Tarceva may slow or stop the growth of cancer - and may even shrink the tumors in some patients. Tarceva is convenient to take; it's a pill you take by mouth once a day as prescribed by your doctor. Individual results may vary.
Q. Does Tarceva really work?
A. Though individual results may vary, Tarceva has been shown to help some patients live longer. In a large clinical study, 31.2% of patients who were taking Tarceva were alive one year after they started Tarceva, as compared with 21.5% of patients who took a sugar pill. Additionally, large clinical studies have also proven that Tarceva can slow or stop the growth of cancer cells in some patients. Speak with your doctor about whether Tarceva is right for you.
So far Mom has experienced few side effects from the chemo. – at least that she’s admitted to. Another big development – it’s been determined that Mom is NOT a carrier of the “cancer gene”. This was very surprising to just about all involved given this is Mom’s 2nd bout with cancer + her mother died at age 50 from cancer. This is especially good news for my sis but also for me & my daughters.
I’m anxious for my next visit which is about 4 weeks away. Iowa will be heading deep into fall at that point, Mom will be well into her treatments & it’s possible that the next cat scan will have been taken. Mon. is Oct. 1 – that start of “*** Cancer Month”. I’m hoping Mom will write a guest blog regarding the disease. We’ll see.
FRI. OCT. 12TH
Mom is in her 2nd week of round 2 of the chemo. treatments. Was quite tired after y’day’s, but she’s also doing a lot more which might be part of the reason for the fatigue. Overall, both Mom & Dad seem to be doing quite well. I head home for a “reconnaissance mission” again 2 weeks from tomorrow. We’ve booked our plane tickets for Christmas. I’m concerned about how I’ll manage to get home on any kind of regular schedule next year since I might not have the sick days to use. Oh well, I’ll jump off that bridge when I need to. Side effects from the chemo. & oral medicine still aren’t too bad for Mom. A bit of a rash due to the oral med. but not bad according to Mom. The kids continue to make this saga more “interesting”:
- 4-yr. old’s class made a “get well” card for her & mailed it Wed.
- Mom went into the office(!) a couple of times the past week. When she told my 4-yr. old this on the phone, my daughter said “Don’t go to work, you’ll make someone else sick”.
- My wife was talking about donating to a cancer charity & my 6-yr. old said “why don’t they just send all that money to Grammy?”
- And a couple of nights ago my 6-yr. old called Grammy & when she got done talking to her, my daughter said “she sounds good”. In other words, Grammy doesn’t sound like she’s sick. It’s hard for my girls to understand this kind of sickness.
This is *** Cancer Awareness Month & Mom wrote a guest column for my station blog. In fact, Mom is now again reading the newspaper, doing some computer work & seems to be more interested in the things she did before getting sick including cleaning, cooking, etc. Here’s her blog:
“A CHRONICLE OF MY B R E A S T CANCER”
The year 1989 was going to be a big year for me as I was to turn “50” in April. In February, 1989, at 7:00 A.M. I traveled 50 miles for my annual mammogram without any fear of problems. A second X-ray was taken which was not unusual and by 10:30 A.M. I was back at work. When I got home at noon for lunch my phone was ringing and my Doctor informed me that I had a suspicious spot on my b r e a s t and I would need a surgeon to do a biopsy. The Doctor made an appointment for me to have a needle biopsy a couple of days later, and the next day I received a call from my surgeon that he needed to have a conference with me.
I had a malignant tumor and had several options to ponder. Without hesitation, I told my surgeon I opted for surgery because of the location of the lump, and I did not want any cancer in my body, is possible. As a result, I had a radical mastectomy the following week.
After surgery I came home with tubes which I had to measure the fluid several times daily and was alarmed that they sent me home so soon. However, I got along fine and found out it was no problem.
Later I went to the therapy unit in Covenant Hospital and was explained as to the type of exercise that would be necessary for the future use and lifting my arm without a problem. I faithfully did my exercises and my husband made me a pulley in the basement to assist me with some of the exercises. Today I have full use of my arm and can raise my arm as high as the other one.
Since my caner spread into a lymph node I had to take Chemo which was not to hard on me. I took three drugs, cyclophosphamide, fluorouracil and methotrexate each time. My oncologist told me I may lose my hair, and I made up my mind if I lost my hair it would be the end of the world, and I was very lucky and did not. I usually took my treatments on Wednesday afternoon and did not feel badly until Friday evening when I ached all over such as flu aching, which lasted about 12 hours.
After I was through with my Chemo treatments I took tamoxifen twice daily which I believe is a miracle drug. I took it for nine years – it was an experimental drug when I started taking it, and I have a strong belief in its success for b r e a s t cancer patients, although by now it may have been replaced by another drug.
A positive attitude, prayer and faith gave me the most strength during my b r e a s t cancer along with the desire to live and the encouragement from family, friends, co-workers and cancer survivors which helped me get through each day. My employers were very understanding and played an important part in my recovery as I took time off for my treatments and Doctors’ appointments as necessary. I worked full time except for Wednesday afternoon when I had my treatments. I had the weekends off.
In closing I want to encourage all women to do monthly b r e a s t exams, have annual mammograms and clinical exams once a year.
Submitted by Connie Buresh
THE PINK RIBBON
The pink ribbon stands for:
REMEMBRANCE, SUPPORT AND HOPE;
REMEMBRANCE of the women we know who had b r e a s t cancer;
SUPPORT for the women we know who we know who are living with b r e a s t cancer;
HOPE that someday, there will be a way to prevent and cure b r e a s t cancer.
SUN. OCT. 14, 2007
Mom told me on the phone a couple of days ago that she had written on her kitchen calendar that today was the day they were to leave for a month to their “winter home” in The Villages. So much for that.
I’ve been very curious & anxious about the supposed cat scan after 2 rounds of chemo. & was planning on asking Mom & Dad about it. I happened to bring it up to Dad a few days ago while Mom was busy & thank goodness I mentioned it to Dad without Mom knowing. Apparently my sister asked Mom about it earlier in the week & Mom quite emphatically said “we haven’t asked & don’t plan to. If the Dr. wants to do a cat scan, he will”. Point well taken.
TUE. OCT. 30, 2007
I’m sitting in the C.R. airport right now having just been dropped off by Mom & Dad after 3 days at home. Mom has digressed. She’s extremely tired virtually all the time, gaunt & slow to walk. I caught her often (when she thought no one was paying attention) “in her own world” – apparently thinking about things. One time at the kitchen table, another on the couch (where she is most of the time) & an especially poignant moment when she was walking from church across the parking lot to the car. She looked nice – all dressed up but looked razor thin – with her head down. She gets tired of talking to people – I think she likes talking to people but is tired about people asking her & talking about her. She’d rather not be the point of discussion. I get the impression she’s tired of the whole thing. I wouldn’t say she’s giving up, but she’s resigned to the situation & she’s ready. This battle is wearing on her. Even something that should be so minor as a hang nail is giving her fits because it’s not healing properly or fast & it’s swollen, red & blue & leaking puss like a volcano. It’ll be a week tomorrow since it started festering. She sees the Dr. tomorrow for a regularly scheduled appointment & will have the nail looked at then. Apparently the combination of chemo. & diabetes allows for cuts to become easily infected & makes cuts slow to heal. Mom has only walked outside once in the last ten days. It would seem this slide “down hill” started about then following a resurgence of energy. I think the cumulative effect of chemo. + the oral medication is taking its toll.
Seems the pricey pills will end up costing about $2,500 out of Mom/Dad’s pocket but that means $12,500 will be picked up by insurance. That’s better than it looked a while back. The cat scan will be the last week or 10 days of Nov. but an appointment has not yet been set. It’ll be done in Waterloo & -- after being home the last few days – I’m thinking someone needs to be there when Mom & Dad get the results. There’s a chance my sis will be home for T’giving on that day. If not, I might try somehow to make it. If the news is not good, it’ll be very difficult on both of them but especially Dad.
I guess the big news of the “recon” trip was that Mom is very tired & Dad is increasingly frustrated…& that Mom is thinking about the “end”. I didn’t get in until late Sat. & immediately afterwards we went to an aunt’s b’day party…church Sun. morning & more visitors in the afternoon, so we didn’t have much time to ourselves until Mon. First thing at the b’fast table with Dad completely unaware, Mom tells me she would like me to help her write her obituary as well as a newspaper thank-you to the community. I said “sure” & used this is an opening to talk about a funeral. I was somewhat surprised in that Mom said it’s completely up to “us” & she didn’t really have any plans. I asked about music, readings, etc., but she had no requests. So I threw out “On Eagles Wings” which I know is one of her favorites – she agreed…I mentioned “Peace is Flowing Like a River” & she thought that was a good idea. I said how ‘bout a DVD that can be played. She said “yes” & mentioned she really likes that idea & that could be nice (not knowing I’d already set the wheels in motion). I asked Dad if he had any requests & he replied “no” & otherwise said nothing during this conversation. Mom then said she’d basically leave it up to me, my sis & Dad, & I said I’d set up a rough outline & let her look at it & that I thought we’d have people make their own comments. She mentioned she thought her boss might want to say something. She doesn’t want a rosary, just a prayer service/visitation the night before. I was glad to get this discussion out in the open.
So then Dad & I went golfing with a good friend of Dad’s. It was a beautiful day, & we had a nice time – Dad seemed to really enjoy it. On the way home I asked him again if he had any requests for Mom’s funeral & he quickly replied “no”. He did say he had a funeral “outline” he’d received, & he passed it on to me today.
Mom pretty much slept all day yesterday. We only played one game of cards all weekend – Sun. night. She was going to try to play Mon. night but just never mustered up the energy. Dad & I enjoyed watching Mon. night Football.
So this morning dawned bright & early & it was our last chance to work on the obit. After b’fast I asked Mom if she wanted to work on it & she said “yes”, so I sat at the computer & basically took dictation. It’s pretty straight forward, not too flowery or anything. I might still do some more work on it, but the basics – I’m happy to say – are in place & done. I also made note of the pall bearers & honorary pall bearers Mom would like to have. I told her my intention was for her funeral to be a celebration; she seemed to like that idea. I really didn’t have any problem/issues/emotions while doing this nor did Mom. I did noticed Dad was keeping himself busy & generally staying away. While we were finishing up, my wife called & asked what we were doing. I said, “well, we’re doing Mom’s obit.”…& kind of chuckled & said “how’s that for starting out a morning”. Well, this was the breaking point for Dad who broke down crying in the kitchen & quickly exited to the garage. I got off the phone, Mom said “you better check on Dad” which I was planning on doing. I told Mom what we were doing was good & then went into the garage. I told Dad we had to do this…that it was good to get it out of the way now. I hugged him & kissed him on the forehead. He said he understood. I then went back inside to work on the “community” thank-you with Mom. Again…I dictated then moved some things around, changed some semantics, punctuation, etc & we had a pretty good letter. This letter will go in the local paper the next week or two thanking everyone for their actions, thoughts & prayers since her diagnosis & surgery. A little later Dad & I played some corn hole then took about a 20 minute walk when we talked some more. I asked him point blank if he was depressed, & he insisted “no”. I said we needed to get that obit. out of the way. He agreed & said “it just hit me all the sudden”. I said I know & that he needed to somehow keep himself occupied & busy during the upcoming winter. He complained about Mom’s energy, & I said it’ll probably stay that way until her chemo. is over but that there then could be a pretty good period…for how long we don’t know. He mentioned he’s anxious for the cat scan – I agreed, & it’s this part of the conversation that makes me think my sis or I need to be there when they get the results.
Mom also mentioned to me this morning that she has been a little depressed recently – especially y’day. I didn’t really know what to say other than “keep fighting & praying”. She said she will & that “it’s not like her to be depressed”. I told her she has the right & that it’s understandable. I think I’ll follow this trip up with an email to Mom’s co-workers to “keep an eye out” although I don’t really know how they can help. Mom really doesn’t care to have too many visitors – not even phone calls. But it’ll make me feel a little better that someone close will be looking out. I did stop by Mom’s office y’day & talked to her co-workers & mentioned that I thought Mom had digressed some. They were somewhat surprised since – when they last saw her at a meeting & when she came into work a few hours a couple of weeks ago – she was seemingly doing so well.
So here I am now in Cincinnati on my layover. My latest recon. pretty much over. I’m trying to digest it all & will have to give a report to my sister. I’ll just tell her things are a little more dicey but leave it at that. My sister & her husband will be there T’giving week then we’re all coming in over Christmas. By then we’ll be down to between 1 & 2 rounds of treatment left & hopefully/prayerfully have some light at the end of the tunnel.
THU. NOV. 22 – THANKSGIVING
Mom is struggling as she has virtually no energy & is sleeping a lot. She’s depressed. Dad is stressed. BUT we are at the half-way point of the treatments. Mom will have her cat scan Monday & we’ll find out the results one week from today. These are anxious times.
I had a “rough” day yesterday for some reason. Sort of snuck up on me. I let it all out with one short but strong cry on my dinner hour at home after talking with Mom & Dad on the phone. Doreen & her husband + my nephew are home ‘til Sunday.
Mom’s finger has taken weeks to heal & is still not completely healed though it’s much better after 2 rounds of antibiotics. She told me a couple days ago that she’s not in much pain – just occasionally some relatively minor back pain – but is just so tired. I told her it’ll stay that way at least until the treatments are done & to not worry about it.
I’m struggling with the idea of not going home next week when Mom & Dad get the cat scan results. But I made my decision weeks ago, will live with it & not look back. Mom & Dad seemed rather insistent on me not coming home. We’ll arrive for Christmas on Christmas Day.
We did have fun at work yesterday with a live phone call on the air with Dad regarding their Thanksgiving Eve 3” snowfall. Dad sent some pic’s & we talked back-&-forth for a couple of minutes. Much to my surprise Mom didn’t get on the phone – the first time that’s ever happened since I started doing live “phoners” with them…some 20 years in T.V. I think that’s one of the reasons I broke down last night.
But I did get a Thanksgiving flower center piece sent to them yesterday. I’m thankful for all the good years we had together…for such awesome parents…for all I have today…for my family…& for Mom & Dad being such good role models in so many ways.
Just got off the phone with Mom & Dad…..they’re getting ready for church. Mom still would never miss church if at all possible. Mom had an eye check-up last week & was looking forward to getting her new lenses with an updated prescription so she could see better only to find out the prescription was wrong, so she’s stuck not being able to see well for at least another week. She’s unhappy about that. Just spoke to Grandma too….she says my sister told her yesterday that Mom wasn’t “very happy”. It remains such a helpless situation.
FRI. NOV. 30,2007
We have the results of the CAT scan!: The pancreatic tumor has decreased “slightly” from 5.1 to 4.1 cm. The liver tumors are “less dense” & one larger tumor on the liver has shown particular improvement. Dr. says the cancer is in a “steady state” – not spreading right now but will also never be cured. He wants to do 2 more rounds of treatments (total of 6) then another CAT scan in late Jan. followed by possibly one more round (3) of treatments. Apparently…chemo. becomes ineffective after certain period of time + other organs break down after too much chemo. + wear & tear on the patient which we’re already seeing in Mom.
But, overall, pretty good news & a pretty good report. About what I was expecting actually. Dad sounded a little broken up with me on the phone as he regurgitated the report but also optimistic – “we’ll have Mom around for a while”. Mom sounded better this morning on the phone. She was even dusting.
So we’ll look forward to Christmas then hope for a trip for Mom & Dad to Florida upon completion of the treatments – maybe in early March – then on to their 49th anniversary in April then to summer & so on & so on. I heard a few days ago that a staggering 80% of pancreatic cancer victims don’t live more than 5 years. We’ll see, but we’re all at least hoping & praying for some quality once her chemo. treatments are over.
Mom is already worrying about Christmas evening. I told her it’ll be fine. She’s concerned about dinner, & I said we’d all pitch in & it need not be anything too fancy or time-consuming. Let’s just sit back & enjoy & take it all in.
And this is the last day of the hurricane season. I bring that up because I’ve had remarkable luck with the weather & hurricanes upon Mom’s diagnosis in July. Relatively frequent trips home even at the peak of the hurricane season did not have to be changed because of the tropics. What luck. And the t.v. station sale appears to be up in the air. The longer we stay Clear Channel, the longer I can use “banked” company sick days to “run” home.
So I’m relieved that they didn’t appear to necessarily need me this weekend. Though – in talking with Dad – I did get the impression he wouldn’t have minded it if I’d come home, but he understands & is o.k. with my decision. Might turn out to have been wise judging from what looks to be a pretty bad ice storm this weekend in Iowa – airports might be tough to fly in & out of. Once again luck on my side. I sure hope & pray there’s luck on Mom’s side too.
MON. DEC. 10, 2007
Mom had out-patient surgery last Thu. for her fingers which are severely “cracked”. Apparently the operation scraped the tissue quite deeply – to the base of the cuts. The fingers were quite sore but have since improved. Dr.’s gave her some pain med’s which are helping though she didn’t use them the last couple days. She’s slept well the last couple nights but still complains about being so tired with no energy. Of course, no way could they not send out Christmas cards! Mom wasn’t so enthusiastic at it, & I told her that was fine & that people would understand if they didn’t send cards. But Dad said “they should send something out”, so they are. Dad wrote a form letter of some sort, & Mom told me this morning she had completed 66 cards! It’s awfully hard for her to write since the 2 fingers she had operated on are on her right – writing – hand.
Christmas is but 2 weeks from tomorrow. I don’t know what to expect – it’ll be bittersweet since we won’t know how many more Christmas’s we’ll have with Mom. I think of her every time I hear her favorite Christmas carol – “Silent Night”. I think the toughest part of the week home will be church. Christmas Eve mass would be especially difficult, but we won’t be home until Christmas Day.
The early part of winter has come hard to Iowa. Mom & Dad have had snow & ice cover since the day before T’giving & temps. have not made it above freezing during the better part of the last 2 ½ weeks! This is wearing on both of them but the anticipation of Christmas is helping I think. The problem will be after Christmas once everyone has left & the weather is still nasty. Dad is trying to exercise some & bingo at the settlement seems to occupy some of their time. Mom says it’s the one thing she can do & feels like doing(!). Dad has decorated the house spendidly for the holidays & seems quite proud of it. He did a little extra since everyone will be home. I noticed he seems to enjoy talking with me & likes to laugh with me. He needs that sort of thing. I’m sure looking forward to being there for a week. Off the cuff, I’m thinking I might fly home again in late Jan. for a quick 3-day weekend. I told my wife we should all fly home in March but then I got to thinking & realized Mom & Dad might actually be down in The Villages then if all goes well. We’ll see. In the meantime, I’m counting the days to Christmas for indeed I’ll be Home for Christmas…& we’re all dreaming of a white Christmas too.
FRI. JAN. 4, 2008
Well, where do I begin? Just back – late Tue. – from our Christmas week in Iowa. Mom is not doing well – that’s the bottom line. She spends most of her time laying down & counts the hours to bedtime once it gets to be late afternoon. She’s thin & frail-looking & obviously depressed. Dad has gained some weight, lots of wrinkles & is sad. I guess I’ll start at the beginning.
Our flight into Iowa was storybook-like in that it was white, sunny & sparkling. Dad & my nephew picked us up at the airport & once arriving at home, reality quickly settled in. I found myself choking up often but managed to keep it under control – sometimes I’d have to go to the guest bedroom until I got hold of myself. Dinner was good & provided by my Aunt – dumplings, sauerkraut, ham & sausage dressing. Then it was time for gifts. The last thing my sis & I opened was what has become our annual (3rd yr. in a row) $ check. We all got up to hug & give our thank-you’s. I first went to Dad, & we hugged a long time as I cried a bit. Then I went to Mom & she whispered in my ear: “you know this is probably our last Christmas together”. Oh my gosh. I lost it & ran to Mom/Dad’s bedroom where I just bawled like a baby. My sis & Dad followed me in to try to comfort me then Mom walked in & said she shouldn’t have said that. I said it was alright & I held her – hugged her hard – for at least a few minutes without saying anything other than Mom saying that hug “felt good”. I never did ask Mom if she had anything else she was planning on telling me, & now I’m curious as to if she did. I’m worried that she’ll now not confide in me because she thinks I can’t handle it. I think I’ll ask her if there was more she was going to say. Well, Mom soon went to bed…my nephew took Grandma back to the Nursing Home, & I proceeded to get drunk – great coping mechanism, huh? While Mom slept, we all stayed up & played cards.
My sister & her family all left early the next morning. The kids were anxious to go out into the snow & did so. Mom sauntered out of bed – tired. The next day was Mom’s first chemo. treatment of round #3. She has swelling in her right foot & leg along with some pain, so the Dr. lowered the dosage which didn’t make Mom happy. Her 2 fingers operated on a few weeks ago are rapidly improving, however. The Dr. didn’t seem to offer much hope. Mom beat around the bush about her depression, but the Dr. wasn’t concerned since she didn’t have a history of depression. But how can one look at past history when we’re talking about the sudden onset of a terminal illness?? I asked the Dr. if Mom’s quality of life would improve once the treatments are completed. His answer was “probably not”. That was a huge disappointment to me though didn’t seem to resonate as loudly with Mom/Dad. I think if I were Mom, I’d say to hell with the treatments. I don’t know if she’s taking the treatments for herself or others. Well, on Fri. Mom had an appointment with the local family Dr. who monitors her blood. We talked with him about her depression, & he agreed to prescribe antidepressants for Mom. She seemed pleased with this & has now been on the medication for a week. The Dr. says she’ll need at least 2 weeks to tell if they’re effective.
Mom did seem to perk up some by Sun. through Tue. & played 2 games of cards Sun. & Mon. – the most at one time in months. My wife gave her “permission” to go to bed earlier, so she did go to bed between 7 & 8 pm (Mom liked this idea of going to bed early & then called my wife “her friend” – ha!). Mom made it clear she has no plans to return to Florida, HOWEVER, at the C.R. airport she did tell my daughters that she’d try to get down to Florida to see them. So we’ll see. Apparently Mom told a co-worker at work a few weeks ago that “it was time”. I believe Mom will live for less than a year. It’s sad, but I don’t see a whole lot of hope. I don’t think she’s giving up as much as she’s just ready. She believes God has a plan & she’s fine with it. Let’s face it: the survival rate of pancreatic cancer is 0. Church was a challenge though not as bad as if I’d been there to go on Christmas Eve. Several times I looked over at Mom & watched her – took a snapshot in my head to remember her by – being in church with her. Mom just doesn’t have much personality any more. When things were funny….when the kids were being cute, kind…she just had virtually no reaction. Finally Mon. morning Mom asked my 6-yr. old at the breakfast table if she’d like to sit on Grammy’s lap but she declined. She’s worried about “hurting” (injuring) Grammy. It was the first time this whole trip that Mom expressed any interest in being close to anyone or having the kids on her lap. She’s just plain exhausted. I noticed she even has a bit of the “shakes” at times – shaky hands. God, it was all hard to watch. There are times you see hints of her old self but for the most part she’s a shadow of her former self. I believe it’s time to get to work on her funeral DVD. Dad did pass along to me some changes/amendments to the funeral plans we worked on back in Oct. & also gave me a list of people to call when Mom passes.
Today Mom had her 2nd treatment of round #3. The Dr. has decided that Mom should have outpatient surgery on her back to relieve her of the pain that has been quite constant (apparently due to the original tumor). This operation will be done Mon., Jan. 14 & will be a celiac plexus injection. Apparently, the Dr. will go in with a needle & nova cane until Mom says she longer feels pain at which point the injection will be done killing the nerve in that area which should then relieve the pain “permanently”. One more procedure to be done. I’m sure Mom is thinking the same thing. She must feel like a voo-doo doll. I just pray she doesn’t suffer, that she’s not going to be in great pain. And I pray for Dad. No doubt this will be a long & difficult year.
SUN. JAN. 13
The 10th just passed – exactly 6 mo. since Mom’s diagnosis. Dad talks about July 10th like people talk about where they were/what they were doing on Pearl Harbor Day, when J.F.K. was shot, when Reagan was shot, when the Challenger exploded or 9-11. Can’t blame him – the day will live in infamy in this family.
Mom & Dad had a scare Fri. morning when Mom went in for her normal chemo. treatment. Apparently her blood pressure & pulse were sky high. She was rushed to the hospital where a battery of tests were conducted. Her only symptoms were a shortness of breath. Dr.’s decided she was fine, her blood pressure went down & so the “chemo. Dr.” decided to go ahead with the treatment. Dad was pretty shaken. So I’ve decided to make a very quick trip home a week from Thu. & will come back Sun. I’m flying directly from Orlando to DSM using the tickets that Mom/Dad were going to lose from there plans to fly to The Villages in late Dec. (There’s still money left over -- $146 round trip!). The timing of the trip is good -- & was something I was already considering – since Feb. is ratings period in T.V. land, & I wouldn’t be able to get home again until early March. A cat scan is scheduled for Wed. then the Dr. follow-up & interpretation is the Fri. I’ll be home.
Mom has her outpatient back surgery this Mon. On Fri. the Dr. told Mom/Dad that “this procedure will be good for a few months & that’s all that matters”. I asked them what that meant & neither could answer as they didn’t follow-up with any questions(!). Mom continues to have little energy, low appetite & little true quality of life. All that consumes their days are shots, pills, monitoring Mom’s blood & sugar levels & trips to Dr.’s. It’s wearing on both of them.
So I’ve been working diligently on the DVD for Mom’s eventual funeral. While sad at times, it has been comforting in a way to see Mom as her old self – vibrant, smiling, hugging & holding the kids. Maybe it’ll be therapeutic for me. I’m hoping to get it done in the next few days, edited in the next few weeks & be done with it. It’s the last thing I want to try to do at the last minute when it’s obvious Mom is in the last stages.
A neighbor at The Villages asked a friend – while he was working on the landscaping around Mom/Dad’s house – why Mom/Dad weren’t there yet. The friend explained & apparently the Association sent out an email telling people about Mom’s condition & encouraging emails &/or cards. Dad seemed touched by this.
Speaking of Dad, he had outpatient surgery himself this past Thu. on his arm for skin cancer. Dr.’s believe they got it all but Dad was clearly bothered by it. It’s something he’ll constantly have to monitor…as will I.
Looking back at the past 6 months I do have to admit I’ve been blessed. The kids have been sensitive to Grammy’s condition…my wife has been a rock…& through all my (our) travels back & forth we’ve had no trouble, no bad weather. And when I’ve missed work, I haven’t missed any serious weather here in Jax. I sure hope such weather luck can continue.
Last month, my wife found the article below in her “Self” magazine regarding a young woman diagnosed with pancreatic cancer:
Choosing my own path
Facing a pancreatic cancer diagnosis, I helped devise my own treatment plan and beat the odds.
By Anna Masellis, as told to Kate Ledger
From the December 2007 issue
“The doctor who broke the news to me in May 2006 was very kind about it. She put her hand on my knee and softly said, "I'm sorry, but we found a mass on your pancreas. The cells are atypical."
As soon as I heard those words, my brain shut off for a moment. I may have shed a tear, but I was speechless. When I went in for the tests earlier that day, I'd known there was a possibility that I had a tumor on my pancreas, but I'd pushed the notion right out of my thoughts. After all, I was a 41-year-old mother of two, I was in excellent shape and I hadn't even felt sick—I thought I had a nagging sports injury. I made an appointment because my squash teammates had me promise I'd see a doctor when I mentioned that this dull pain I'd felt on my right side for the past few months had intensified. I fully expected my doctor to reprimand me for overexerting myself. Instead, when she touched my side, she thought she felt a lump. After results of a CT scan came back as inconclusive, an endoscopic exam and biopsy were ordered, just to be safe.
I didn't need anyone to explain the ultrasound and biopsy results: I have a Ph.D. in medicine, specializing in oncology. I've worked at the Virginia Piper Cancer Institute and University of Minnesota, both in Minneapolis, trying to understand cancer and identify cures. I knew exactly what I was up against. Pancreatic cancer strikes 37,170 people a year. Sufferers, who tend to be at least a decade older than me, are symptomless or experience only vague signs, such as dull pain, so the disease is usually advanced by the time it's detected. Most patients die within a year, and that's probably why only 1 percent of government cancer funding goes to pancreatic studies.
Despite the dire news, I refused to fall apart, probably because I'd beaten terrible odds before. At age 5, I was diagnosed with Wilms' tumor, a rare pediatric kidney cancer, and underwent several surgeries and an experimental combination of high-dose radiation and chemotherapy. It was such an awful experience that my mother still can't talk about it. But amazingly, the protocol that saved my life then has now become the standard treatment for Wilms' tumor—the survival rate has skyrocketed from only 20 percent to more than 90 percent today. So I knew I had to fight this cancer with everything I've got.
A week later, I went in for a Whipple, the routine surgery to remove part of the pancreas. It was supposed to take seven hours but lasted less than one; the doctors discovered a 3.5-centimeter mass on my pancreas and rice-kernel-sized patches of cancer all over my abdominal cavity. The surgeon gently explained to my waiting family that the cancer had already spread too far to do the Whipple (and further tests would show tumors in my liver). Then he informed them that I might have only two months to live.
My mom took the news hard, which broke my heart, but from what I knew of the disease, I wasn't surprised by the prognosis. Because of my advanced stage, the oncologist prescribed pain relief and gemcitabine, the most effective drug for pancreatic cancer, which temporarily staves off the disease in roughly 10 percent of patients. But that wasn't going to be enough. From my research, I knew my approach had to be more aggressive-and that it was up to me to find the right experimental treatment plan.
I believed the best thing to do was attack the cancer from multiple angles at once, using a range of drugs. But in order to do that, I needed to find an oncologist who was willing to push the envelope with me.
I began interviewing doctors and, within a week, found Gail P. Bender, M.D., who runs a private practice in Minneapolis.
Dr. Bender's overall philosophy is to offer her patients many options, some more aggressive than most oncologists would suggest. She told me she was already treating another patient with an unconventional chemotherapy regimen that included drugs typically used to combat lung, ***, ovarian and colon cancers. I thought her approach made sense, so I decided to work with her, even though chemo with a combination of multiple drugs would be physically brutal. The way I saw it, I'd run a dozen marathons and could push myself to extremes. I could make it through this.
I went through four cycles of chemo. It was grueling, and I was lucky to have friends who cooked for me and drove me to my appointments. Two months later, despite the prognosis, I was still alive. A month after that, in August, I had another CT scan: The mass on my pancreas had shrunk a hopeful 50 percent, and the liver lesions were also slightly reduced. I was thrilled—until I learned that a lesion on one of my abdominal muscles had grown by half a centimeter. Suddenly, my joy vanished; all I felt was devastated.
I went home and thought about what wasn't working with the chemo and, ultimately, figured that the drugs may not have been reaching the inside of my abdomen well enough. I remembered a journal article I had read, which described a procedure in which medicine is surgically delivered into the peritoneal cavity, where it can bathe the tumor cells directly. It's a method Dr. Bender had long used for ovarian cancer, one that only recently became standard treatment for that disease. Dr. Bender and I discussed the idea, and we agreed it was a good approach. The only glitch: We had to wait a month; my body needed to recuperate and build immunity after the last round of chemo, so I wouldn't be susceptible to infection during surgery.
I was so energized to have a new strategy that it was hard to wait. Finally, in October, my surgeon installed a port between my lowest two ribs, where the drugs would be infused. He discovered that, despite the enlarged tumor, every abdominal cancer kernel had been obliterated. Gone! I'll never forget the smile on his face when he told me. I smiled, too—I was making progress.
The abdominal infusions made my belly puff up, and I felt tiny electrical-shock sensations and harsh gastrointestinal cramping that lasted a week. In March 2007, after 18 weeks of treatment, my CT scan showed a clean abdomen. The news was incredible, but I still had a tumor on my pancreas, so I devised yet another regimen of chemo. Our hope was that switching therapies would keep the cancer from becoming resistant to treatment.
It's been a year and a half since I was given only two months to live. The CT scan I had this past August showed no metastatic cancer anywhere, and the primary tumor on the pancreas had shrunk to 2 centimeters and formed calcified plaques, which most likely indicate dying or dead tissue. Even so, I have no delusions: Pancreatic cancer has a nearly 100 percent chance of recurring. Until that happens, I'm taking full advantage of the time I've been given. I spent the summer in Italy with my kids, I see friends and I pick up my squash racket to play when I can. As a result of this experience, I advocate for other cancer sufferers and help review grant proposals for pancreatic cancer research at the Mayo Clinic in Rochester, Minnesota.
For a scientist, there's no high quite like having your experiment work. That's why I'm helping to write a case study about what I've gone through to share my success with other doctors. I hope my fight against cancer will inch us closer to a cure.”
MON. JAN. 28
Well, lots to cover…just returned home from Iowa late last night. The gist of the cat scan & Dr. consultation was this:
The primary tumor is again growing – increased a solid ½ cm.
All other tumors/lesions are increasing in size & number.
Not much left to do – all treatments essentially suspended.
Obviously, a most difficult last few days. Mom & Dad asked no questions of the Dr., so I finally spoke up & asked point blank “How long does she have?” His answer: “This is a very bad disease. Maybe 3-6 months, probably closer to 3.”
From there on, it was physically draining & emotionally exhausting.
The cat scan was Wed…the Dr.’s office immediately called that a blood clot was evident along the femur (upper part of the leg). Mom had no symptoms but immediately was put on a blood thinner which means 2 shots per day in her tummy again!
I arrived home about 7:30pm Thu. night. Mom was laying on the bed but sat up by the time I made it to her bedroom. (I’ve discovered this is something she does – pops up & sits up & smiles when someone enters the room no matter how crappy she feels). We hugged but oh how thin she was! It’s hard to imagine – skin hanging down, her complexion white, her hands shaking but still the hint of a smile. My God…you’d think by now I’d be prepared for this downhill slide – looking worse every time I’m home, but it still shocked me. I watched Dad dutifully apply the shot. Large bruises were already evident from previous shots. At that point Mom was ready for bed, so Dad & I got a bite to eat.
We arose early the next morning as the Dr. consultation was at 9am. It was bone-chilling cold with lots of snow on the ground. Hard for anyone healthy to get around let alone someone in Mom’s condition.
The Dr. did say Mom could start on an oral chemotherapy. She agreed & will start the treatment soon. Dad, my sis & I don’t see the point but Mom wants to take them & if that’s what she wants then that’s what she gets(!). Nurses took out the tube that had already been inserted in the port for her next chemo. treatment since such a treatment would not be done. Dad & I stood out in the hallway alternating between tears & sighs. Dad would just say “shoot, shoot”. Something he said frequently the rest of the weekend – a big sigh then “shoot”. I told him we had to know & he said it’s not surprising. He’s right, but it’s still shocking. We went out to the car as more snow fell. We had planned on lunch, but Dad said he wasn’t hungry. Mom said we must eat. We ended up at Red Lobster where everybody ate well as big flakes of snow fell & little was said. We drove home in silence.
Once home, I asked Mom what she thought of the prognosis of 3-6 months. Her answer: “That’s what they told me 6 months ago.” And that was that. I took off to see Grandma & decided on the way to stop by the church to enquire about funeral “protocol”. The office was already closed but – just by great luck (grace of God?), the priest was coming out of his office. I introduced myself & said I had some questions about the funeral process. He was surprised to hear Mom was declining so quickly which I came to found out was a frequent response through the weekend. Apparently they were never too communicative about Mom’s condition. People were seeing her go to church, so I guess they assumed she was doing o.k. The priest gave me a booklet on funerals with possible readings which was helpful + an outline for the Wake Service & funeral. We talked for about 15 minutes & Father did say to tell Mom/Dad to call him if they needed him. One thing I learned: a Catholic funeral mass will not stray from the norm. Spontaneity is NOT encouraged. Lord forbid such! I asked Father about the DVD playing within the funeral. Apparently this is a big no-no, but he did end up saying he’d acquiesce if we so desired. The only “off the cuff/out of the box” opportunity will be after Communion when traditionally a family member or close friend says a few words. So I haven’t decided if we’ll go for the DVD or simply a poem. I’m hoping to be able to do this part. The Wake Service the night before the funeral will have great opportunity to be “celebrative”, so I guess we’ll whoop it up then(!). After visiting Granny, I told Mom & Dad I talked to Father. This seemed to please them & -- for the first time – jog their memory that it might be a good idea to call him (which shocked me). So Father will be visiting this week.
None of us slept well that (Fri.) night. I awoke at 2am & read the funeral book until 5am then slept some more ‘til 8am. I wasn’t impressed with many of the readings but a few stood out. So many of them talk about “fearing God” – to me that’s always been the opposite of what faith should be about – counter-productive & counter-intuitive. Is one to be “good” so as not be scared to death about the consequences? I’ll have to study some more on that one.
Anyway…Sat. morning was spent talking about funeral plans, making some more arrangements. The outliner was good in that it reminded Mom/Dad of some things we had not yet covered. Dad sent out a general mass email late Fri. reporting on the results (but not that we were down to months)…this resulted in lots of calls Fri. night & Sat. morning along with several visitors.
Sat. afternoon Dad & I got out of the house for a brisk 2-mile walk. We talked about lots of things – hospice, the Florida home, living alone in Toledo, what we’re going to do, etc. Dad needs support/prayers but a certain amount of coming to terms with this whole thing will have to be done personally – it’ll be a process. I told Dad it might be good to sometime consider a hospital bed in the living room, so Mom can at least look outside. I don’t know that she really cares, but it sounds better than the bedroom. I really don’t think Mom will be very mobile much more than another 3-6 weeks which will then be followed by about another 3-6 weeks of being confined to a bed. She walks slowly & sometimes gets light headed. I noticed that sometimes her right leg sort of “kicks out” when she walks…which is turning into more of a shuffle. I found her at one point Sat. morning curled up on the covers of her bed. She was obviously in pain – uncomfortable – but didn’t really admit to such.
The “old symptoms” have reappeared – a feeling of fullness so usually no appetite & her eyesight is declining again…her blood sugar level is becoming increasingly difficult to control. All signs that the end is near.
Dinner Sat. was at Zeno’s Pizza. The sweet owner knew that if I was home, things weren’t good. She hugged me & offered her prayers/support. What a beautiful thing. I was watching Mom eat & noticing it’s very difficult for her – more of a chore, certainly not pleasure – she’s forcing the food down.
Sun. morning was difficult. Mom didn’t feel up to church & the first moment someone said something to me (a family friend: “I’m sorry to hear about your Mom’s report”), I lost it. “Losing it” continued on-&-off through the mass. Dad wiped tears continually. The worst part was Communion. Dad was a Eucharistic Minister that day & was “working” the line I was in. I didn’t notice it until it was too late (I’d have gone to another line). I had the little case that would hold Mom’s host…held it out then Dad offered me mine. I could say nothing as tears rolled down my face – it was awful, helpless feeling. I sort of motioned my head for him to put the host in the “holder”.
Upon getting home, Mom’s boss & his wife brought over a nice stew lunch & her boss said a wonderful prayer. After lunch, I sat with Mom & we (mostly me) talked. I asked her if she wanted her final days to be at home & she said “yes as long as Bob can handle it”. I told her that would be fine – that he’d have help. I told her I appreciated everything she’s done for me over the years. That my only regret is that my daughters won’t grow up with her in their lives. Her only response was that I’m a good son & father. I told her I love her, kissed her on the head & sat there for awhile. That was just about it. She really doesn’t have a lot to say & would rather not talk a lot – to ANYONE. Remarkably she did make my favorite rise krispies Thu., & I made sure to let her know they were great & I appreciated them. I imagine it’ll be the last thing she ever bakes for me. Mom & Dad did find some chocolate chip banana bread in the freezer she made back in Oct. We were suppose to eat it at Christmas but Dad & I couldn’t find the darn stuff – took everything out of the freezer twice – it was the most frustrating thing. I figure my oldest daughter will still get a chance to eat her “favorite bread”.
And so Dad & I took another long walk then it was time for me to go to the airport. No doubt flying home was the right decision – Dad has expressed his gratitude time & time again.
So the sun is setting on what has seemed like a very short good-bye.
SAT. FEB. 2
Mom is quickly going downhill. She had an “episode” last night in which her pulse went up, she couldn’t sit up & was badly disoriented. It scared Dad an awful lot, & he checked on her frequently for several hours to make sure she was o.k. – that she was breathing. I don’t want him to be alone with Mom when she takes her final breath yet I don’t want to be there to see it myself (though I’d like to be there for Dad’s sake). While talking with Dad this morning, he just kept on talking. I could tell he didn’t want to hang up. He doesn’t want to be alone. This is when “leaving the nest” suddenly becomes extremely difficult.
Hospice “folks” are coming Tue. afternoon for a meeting & at least some hospice care will begin immediately. By the looks of things, full hospice care might be just around the corner. I’ve heard great things about hospice in the past but have never had any direct experience – all indications are it’s an incredible thing. They’ll take care of virtually everything as Mom’s condition continues to deteriorate right on through the death. This has seemed to be comfort Dad at least to some degree.
So feeling helpless today I decided to send a half dozen red roses in a vase. I want to be there in some way, shape or form. Seems rather mundane to send flowers, but it’s what I’m relegated to at the moment. I’m not sure Mom will even make it to the end of the month…very doubtful she’ll make it through March.
The DVD is done & I feel is beautiful. – only 4 min. 15 sec. Dad thought it was a bit short but didn’t realize there are 44 pic’s + her talking during family celebrations. It simply moves right along which is the way it should be. I still say it’s is therapeutic to see her well & vibrant.
I’ll never forget 2 moments last weekend while I was home: (1) Me helping Mom make her bed Sun. morning. I noticed she wasn’t out in the living room, so I went to find her & there she was making her bed. I asked if I could help & she said “sure”. I watched her as she was as meticulous as ever – going so far as to tell me when I didn’t have it just perfect! I watched her carefully. She was very much into this project. She arranged all the pillows perfectly.
(2) Watching her sleep in the living room Sat. afternoon. It was as I imagined seeing her in the casket – quiet, serene, hands folded across her stomach. Lifeless but in a better place. I was angry at myself for thinking this & yet I couldn’t help it.
My wife asked me last week if it was time to have “the talk” with our daughters – about Grammy dying. I said I thought we could wait a while thinking that they’d still talk to her from time to time if Mom was able. If we had this deep discussion with them then they might not understand that they can still talk to Grammy when she’s up to it. However – in light of recent events – it seems that that “talk” is necessary. We’ll probably tackle that one in the next few days.
This is difficult. Some days I “zing” right along. Others are trying. I want to be able to hold it together at the funeral, but I don’t know that I can. Tears of grief & sadness are perfectly normal but in order for the prayer service & funeral to go the way I envision, I must have it at least somewhat together.
My sis will arrive a week from today. I don’t know that Mom will still be able to stand though I believe she’ll still have most if not all her faculties. I hope so for my sister’s sake as I think sis considers this the true & last farewell…just as I did last weekend.
SUN. FEB. 3
I received this sobering email from Dad in response to my email asking who we could call to the house upon Mom’s passing in case my sis &/or I aren’t there:
“I thought about this the last few days, who I could get to come to the
house when the Lord will take mom.”
So at least it sounds like Dad realizes the gravity of the situation. I never really doubted that the last 6 weeks or so, but it’s the first time he’s come out & said (typed) it. Now I have to make that phone call to their friends (two) to ask him if they’d be willing.
Ever since Dad told me – yesterday morning – about Mom’s “episode” I’ve felt like I was going to vomit. The thought of Mom suffering…of Dad watching it. I mean think about it – they’ve been married 48 years + a few years of dating + essentially growing up together in the same small town. They are one. Dad told me this morning that Mom had another “episode” last evening – similar to the previous night & just about the exact same time. Dr.’s thinking is it’s the new chemotherapy pills. She has to take 4 in the morning & 4 12 hours later with food both times. Dad says it’s been closer to 8-10 hours apart because of Mom’s schedule, but he’s going to try to spread it out better. I told him why don’t we just stop the med’s? He agreed but says Mom isn’t ready to do that yet.
Read a couple of things yesterday:
“Hospice is code for 6 months”. I’m sure it’ll be far less for Mom.
“The happiest times of an adult’s life are near 20 yrs. old & again near 70 yrs. old (if you have your health)”. I guess Mom won’t see that second peak of life though I think she’s been very happy – for the most part – for a good part of her older life.
A good homily at Mass today as Father emphasized that God doesn’t create bad things to happen to us – nor are bad things meant as any kind of punishment. The Good Lord is there to help us – even carry us – through the bad times. Something to remember.
I did get to talk to Mom this morning. I caught Dad as he was leaving for church so then spoke to Mom for a good 5 min. or so. She sounded weak, a little hoarse but otherwise not too bad. I sent them 6 red roses in a vase y’day…she thanked me & seemed to really like them. Let’s face it – it’s the little things now. I got to tell her we were going out for lunch “on them” – Cracker Barrel gift cards Mom & Dad gave us for Christmas. Gift cards were a big thing given Mom’s health. Mom had also shopped for 2 dresses for my girls to give to them for Valentine’s Day which they wore today to church. I took a picture & will send it to them. Best part of my conversation with Mom was we ended it with the “Lord’s Prayer”. It was nice.
So it’s Super Bowl Sunday today. I have to work tonight since the game is on our affiliate. I think I’ll call Dad at halftime & maybe later again so we can sort of “watch it together”.
MON. FEB. 4TH
Well, I called home last night right after the Super Bowl game but no one answered. So I called his cell phone & sure enough Mom had just fallen in the bathroom. He was still assessing her when I called, so I asked if we needed to call 9-1-1 or someone nearby, but he insisted he had things under control. I could hear her talking in the background & Dad said he’d need to call me back. After about 10 agonizing minutes he called back to say he thought everything was under control. Again I could hear Mom in the background & she was asking why I was calling at midnight & if I was o.k.!!
Dad said he was putting a puzzle together in the guest bedroom & watching the game when he heard a crash. He knew Mom had fallen & found her passed out up against the shower door. She was disoriented but only has a small bump on her head. I was mortified & thought immediately I need to get home.
After talking with Dad this morning, I’ll stay put for right now. They had Dr.’s appointments in Waterloo this morning but cancelled all of them due to Mom’s weakness & decline + lots of ice this morning. He talked with the Dr. (“the cancer Dr.”) & they both – as we have all thought since prescribed – felt it was time to do away with the new chemo. pills (xeloda). Hopefully this will stabilize things some.
Mom & I did again talk this morning, & she sounded quite good. We prayed together though I was too emotional to pray along much. Interestingly, Mom did say she thought “the end” was not as close as Dad thinks. She might be right. For some inexplicable reason this has given me some comfort but Lord knows it’s still just a matter of time but perhaps she’ll make into March or even April.
Poor Dad. He’s doing a good job, but it’s got to be taking a toll on him. I think I forgot to mention that while I was home last weekend, I noticed the kitchen calendar – a small paper notebook-like one on a 2-ring binder – that Mom has had since I can ever remember…she always just buys a new year’s worth at the end of each year…was still on Jan. 15 even though it was already Jan. 25. This has always been her way of keeping her life in order – appointments, important dates. She had been keeping up with it until the 15th – another sign that the sun is setting.
WED. FEB. 6TH
Mom is doing better now that she’s off the “chemo. pills”. Just about back to where we were a couple of weeks ago which is better than the nightmarish weekend. Mom is eating quite well & has actually gained a pound or two for the first time in months. No cancer treatments are now being administered which is likely to be the way things go from here on in. I’ve had the opportunity to talk to Mom just about each of the last few days, & she’s sounding pretty good.
The hospice supervisor paid her a visit y’day afternoon & things went quite well. Mom signed the papers & initially a nurse will come by once a week. Hospice seems to be quite an amazing program – Mom was impressed & comforted & Dad was definitely relieved. Hospice can be increased, decreased, stopped, restarted at just about any time. The only requirement is that the sick individual be terminally ill with little or no medication to try to save the patient. But from here on out Hospice can just about take care of anything & everything. Virtually all of it is even paid for! – through Medicare. I can tell Mom & Dad were impressed because they’ve added Hospice to Mom’s Memorial.
So things seem to have stabilized for the time being. My sis arrives a week from Fri., & I’ll be back out in a few weeks. 10”+ of snow since y’day!
Mom did mention to me that – while she’s been sleeping very well – she’s having “weird, long dreams”. Seems these dreams go way back – like to her days of being a child, growing up into young adulthood. Interesting though a little bit un-nerving considering it almost sounds like God playing back a movie of her life for her(!) prior to her passing.
SUN. FEB. 10TH
Lots of mixed emotions today. It’s my oldest daughter’s 7th b’day today – the first one that Mom & Dad have not been here for. I’ve found it to be surprisingly difficult on me. Especially hard when my daughter opened their Christmas card with a check + a nice note written by Dad & signed by both Grampy & Grammy.
They called early this afternoon & both talked to my birthday girl. Mom took a fall last night – either slipped or fainted. She could remember the whole thing except for going from the floor to the bed where Dad carried her. She bruised her nose – apparently from her glasses but otherwise seems to be o.k. Of course, she took her shower this morning and made the bed. Mom has sounded a little weaker the last couple of days, & I get the feeling she’s pushing herself to talk to us as much as possible now. She knows the Lord is calling.
Dad told me the other night that they still have prayed the Rosary every night since July 10th (diagnosis day). Pretty amazing…I can remember growing up & they said the Rosary every day – sometimes in the car on long drives, usually at night before bed. Every day.
The hospice nurse paid Mom & Dad a visit Fri. They seemed to like her, & for now she’ll come by the house once a week – every Fri. She’s just a call away if Mom/Dad need something or have questions. Apparently the nurse asked Mom if she had any wishes. Mom replied: “I’d like to get down to Florida one last time to say good-bye to my friends”. Gut wrenching for Dad…& for me. I’ve asked her several times if there was anything she wanted to do, to go, to see. She’s always said no until this time with the hospice nurse. I don’t know that this is a wish we’ll be able to grant given how weak she is & now that the cancer seems to be coming on strong. I’m disappointed, but I think if Dad sees any window of opportunity he’ll jump on it & fly down for a few days up to a week. Mom can board on a wheelchair & maybe she can be seated in a very front row where she’d have more room. It sure would be nice to be able to do it for her, but it just might be too late.
Mom has gotten in more of a routine on bowel movements & generally seems more comfortable. Dad did say, however, that she’s not eating real well at the moment. So after a relatively good few days last week, she’s struggling a bit now. I’m guessing the good & the bad days will come & go in clusters in the coming weeks & that eventually the bad days will begin to take over as the decline becomes more dramatic.
Sis arrives this Fri. evening…I’ll fly out in 3 weeks for a few days – March 1st through the 5th.
MON. FEB. 17TH
Another 6” of snow y’day at Mom/Dad’s. But the good thing is that my sister & her husband are there for a week which will buoy Dad’s spirits at least. Mom sounds a little weaker on the phone, but I’ll wait until sis leaves to bend her ear on exactly how Mom is doing.
I’m in my typical “far-removed” mode. Into my own stuff here at home in Jax & what’s going on with Mom & Dad – while still close at heart – not the severe pain as when arriving at Mom & Dad’s & for the week or two afterwards. So I’m about to got through that again since I’ll be there less than 2 weeks from now – leave a week from Sat. & will stay about 5 days through the following Wed.
Sis did say that Mom is in a fair amount of pain – back & stomach. I assume things are progressing about as expected. I’ll know for certain when I get a firsthand look in a couple of weeks.
TUE. FEB. 26TH
Mom suddenly seems to be rapidly declining. This decline started Sat. – Sis’s last day & has only gotten worse since. She’s eating very little, walking very little & is disoriented. Early this morning she soiled the bed…Dad’s been up since 5:30am. He had to wash her up & clean the bedding. Hospice will begin daily care tomorrow. Dad thinks it’ll be just another 2-3 weeks, but the hospice nurse says if she doesn’t start eating it’ll be much shorter. Dad was a bit of a mess when I called this morning but seemed a little better this evening…whatever “better” is. We’re hoping this is just an “episode” that she’ll come out of. But then what the hell are we hoping for?? I’m sick & angry about what Mom & Dad are going through. Thieves, murderers, rapists, other misfits…o.k. – go ahead & throw the worst of the world at them but Mom & Dad??!!
My flight leaves early Sat. I looked to find other ones & there are flights Thu. & Fri., but Dad says just stick with Sat. I guess that’s what I’ll do. I did not want to see Mom in such a vegetative state, but I guess I will. Ugh.
Mom’s sister came home early from their usually winter home in South Texas. Her & her husband surprised them by calling last week saying they were home & ready to help out.
Dad said the rosary by himself tonight – the first time since this whole thing started…the first time in their 48 yrs. of marriage! He’s doing well but is so sad – hates to see Mom like this. The two of us together this weekend will be a basket case! Dad’s already concerned about how we’ll get to church, if we’ll get there. Frankly…I’m wondering if I want to go.
We haven’t had “the talk” with the kids yet. My 5-yr. old has been saying recently that she wants Grammy to hold her & to dry her off when she gets out of the shower. She says “Grammy is the best dryer-offer there is”. If my girls only knew, only understood the finality of all this…the tragedy – in my eyes – of not having Grammy while they’re growing up.
WED. FEB. 27th
Mom is severely declining. As of today, she’s bed-ridden & eating very little. She did eat some solid food – the first of any substance for 3 days – for the hospice nurse about noon. Hospice care out of the home will now kick in daily. My cell phone rang this afternoon with i.d. “Mom & Dad”…I knew it wouldn’t be good. Dad told me the nurse’s “take” was Mom had maybe another 10 days. Now this is the same nurse that told us 2-3 months 2 weeks ago, so we’ll see.
My wife told the kids this afternoon. I’d rather she’d waited ‘til I was home. Apparently the oldest shed a few tears but handled it quite well…the youngest whaled. By the time I got home, neither one showed any signs of any trauma which is just as well. They’ll get an eyeful at funeral time. Oh how I bemoan them not growing up with “Grammy” in their lives.
I did get to talk to Mom this morning. She sounded weak but otherwise not too bad. I told her I’d see her Sat. & she even said she was looking forward to it & that she was surprised Sat. was coming so quickly. It was difficult & sad. And it’s so difficult for Dad. I always said I never wanted to see Mom “at the end”, but it looks like I will be. I’ll do anything for them.
Everyone is in shock with how quickly this all happened. Frankly…I’m not. Pancreatic cancer is a killer – one of the worst cancers you can have. We knew last summer this was not going to be good. It’s been a long good-bye & in some ways a very fast one. Mom has had little to say…stoic, courageous, graceful, prayerful but not at all angry, too sad or depressed.
I’ll never forget July 10th – the diagnosis call…I’ll never forget my sister telling me they couldn’t do the full surgery…nor hearing that Mom’s first words after waking up from surgery were “did they get it?”…Mom telling me in Oct. that “you are a good father”….making chocolate chip banana bread for Willa…making rice krispies for me…her attention to detail right up to a few days ago…her concern for Dad…her persistence…no complaining…her telling me Christmas Night “as you know, this is probably our last Christmas together”…I’ll never forget how lucky I was with my job & the weather regarding all my trips to & fro’ Iowa. And just how nice & compassionate people can be – the cliché “true friends” during rough times has become obvious. My best friend in NYC is amazing.
And so I’m set to fly to Iowa Sat. I’ve decided to leave the return to Jax open-ended for now. I’ll be packing more things than originally planned. My faith, strength & resolve is just about to be severely tested. But I’ll be home for Dad soon…for Mom, too, of course.
THU. FEB. 29
I got the chance to talk with Mom again this morning, & she sounded much better – still weak, of course but definitely better. I told her I would plant a lilac bush in their yard once the snow melted (they had another 3” today!). The lilac is her favorite spring bloom, & she seemed to like this idea as she apparently told Dad several times today. I asked her if she was still praying, & she said “yes, still praying.” Dad was in much better spirits (we talked for a short time this morning but about 30 min. this evening) because:
- Mom was having a good day & eating
- He had lots of visitors – Sister & her husband again…a couple from hospice…the priest gave last rights…the family Dr. called to see if he “could just stop by” & stayed 45 min.
So Mom appears to be in one of these rallies. She ate a lot today & was pretty sharp, so we’ll see how long this lasts.
SUN. MARCH 2nd
Since this all happened in July, I’ve said you simply cannot prepare yourself for walking through the door & seeing Mom for the first time in a while. This time was no different…it was pitiful – shortness of breath, rarely conscious, involuntary movement of her arms, hands & fingers, Ethiopia-like thin, a certain stench. It was awful, & I was very emotional for some time. I lay next to her, I knelt next to her. Dad clearly had his hands full. She didn’t get out of bed all day & didn’t eat anything. Her 2-day rally was over. A nephew visited late in the day & Mom’s sis & brother-in-law came over shortly after I arrived. Not good timing considering I was still trying to get a grasp of things, but she brought some of her splendid homemade cherry pie. They’re obviously concerned which is good to see. I can only imagine what it looks like to her for Dad & I to be jumping around her. At one point she said “oh, you guys”. We must look like the 2 stooges!
Interestingly, I went in to pray with her in the evening, & she mustered parts of the “Lord’s Prayer”…I told her I loved her & she said the same to me. I was absolutely exhausted – having gotten up @ 4am. Dad & I played some cards, & I went to bed @ 9:30. I immediately fell asleep & awoke @ 5am. I figured I’d be up for good…took some aspirin for a headache & fell back asleep until 7:45 when I heard Dad talking with Mom.
So I got up & went into the bedroom where – for the next hour & 15 min – we tried to get Mom “ready for the day”. Oh, what a chore. I don’t know how Dad’s been doing it. She needed to go to the toilet, so we got her to sit up. We then got her on her feet, but no way could she walk. Her right leg is badly swollen from an apparent clot. We told her we could put her on the “mobile toilet”, but she wanted nothing to do with it. Several times we tried…she was determined to make it but no way. I could carry her, but she’s in a lot of pain when people try to pick her up. Finally, she relented, & we put on the mobile toilet where she finally went to the restroom. She then expressed an interest in food. I mentioned her sis had brought homemade cherry pie, & she said she’d like some. I fed her about a third or so which was a start. Another nephew showed up at about the same time & visited for a hour or so. It’s the first time I’ve seen him with tears in his eyes since Mom got sick – he clearly knows the “ending” is not far away.
Dad & I then went to church…my aunt & uncle came over to sit while we were gone. Church was not an easy place. The choir did sing “Amazing Grace” for the communion song – one of Mom’s favorites & one to be played/sung during her funeral. On the way into church, a family friend asked about Mom & said “she’s the kindest person I’ve ever known” – the ultimate of all compliments.
Once home…Mom perked up & was hungry for some more pie. So she finished off the piece she started in the morning (I fed it to her) + had some 7-Up. We had no straws in the house & Mom was having a lot of trouble drinking, but the grocery store is closed on Sunday’s. This was an unseasonably warm day – the warmest day in Toledo since before Thanksgiving! People were outside in t-shirts & sweatshirts celebrating! So Dad & I decided to build a snowman…mainly to email to my daughters. Another aunt showed up while we were doing it & took a pic for us which we’ve had fun sending to the girls & friends & relatives.
I hate to say we took advantage of my aunt, but we sort of did. She said she had nothing planned for the afternoon, so we took off for Grandma’s. We first brought Mom to the couch because she expressed an interest in doing so. I doubt she’ll walk again, but we wheeled her out on the walker. At the nursing home we asked for a few straws.
Once back home after visiting with Grandma, Dad & I took a 2-mile walk . Once back, my aunt took off as Mom watched – to some degree – the morning mass on T.V. Dad gave her communion & some “Baptist wine”. She’s drinking much more now with the straws. But her involuntary arm & hand movements continue. That’s really bothersome at first, but you learn to overlook it after awhile…except for Dad. He keeps telling her there’s nothing in her hand. He also talks loudly to her, & I try to tell him she’s not deaf. He said she can’t hear, but I don’t think that’s what it is – her mind is relatively sharp, but her mouth can’t keep up with what she’s thinking. She’s sort of told me that.
Shortly thereafter, a cousin showed up with dinner – fried chicken, baked beans, potato salad & rice krispies. Mom was still sitting up on the couch & doing pretty well. She managed to eat roughly a large tablespoon of baked beans & few pieces of chicken. Pretty good considering that’s the first warm food she’s eaten since I’ve been home.
Well, back after a 15-20 min. interruption. Seems when Dad went to bed, she said she had to go to the bathroom. I went in to help…she was saying “what did you guys do me? Something’s different. What did you do to me?” We got her on the portable toilet & she went a furious #1 with quite a bit of gas. She kept telling us “you did something”. I asked if she was in pain & she said no so once done we got her back on the bed. She sat there for awhile & kept saying “what’s going on? You did something”. We told her we just got done playing cards. She finally agreed to lay down. I said you need to get some sleep & she replied “I don’t know how. It’s hard.” Then she said “why did you pick me? Why are you picking on me?” It was like she was talking to God. I said we didn’t pick you…that I’d be glad to take this from her & put it onto me, but I couldn’t. “You have done that many times for me, Mom but there’s nothing I can do this time. I wish I could take it from your body & put it into my body. You will go to heaven.” She said: “I wish I could. I hope so.” I said: “you will. If you’re ready, we’re ready & we’ll take care of Dad.” She didn’t reply, but she had her eyes wide open. Earlier in the conversation she also said “I’ll never be the same”. So I don’t know what all this was, but she appeared to be having a revelation about her current state of health. Dad shut of the lights, & I started saying the “Lord’s Prayer” which she immediately joined in on & said pretty well with me. I told her “I love you” & she replied in kind. She seemed to settle down & is ready to sleep. Hopefully she’ll have a good night’s rest.
As I type this, sleet is hammering against the window, the temp. has dropped to 32 & soon it should be snowing. I’m going to take a snow walk – at 11pm.
I’m going to stay ‘til at least next weekend & possibly into at least the following week. No way can Dad be alone on weekends. We’ll see how things are going as the week progresses. I’ve said this over & over in my head & while in conversation with others: “it’s time. If God brought her to this point then surely he’ll take her sooner rather than later”.
MON. MARCH 3rd
Mom had a “good day” today…whatever that means. A good day means she’s alert, but you know a bad day is just around the corner. It’s tough just to go to bed – ya’ don’t know what to expect the next day. I’ve extended my stay until one week from today. I have no idea how Dad’s been doing this. On this – a good day – it still took us a hour to get her ready. When Mom’s b’fast was over it was already 9:30.
More snow overnight, & I did indeed take a “snow hike” about 1am – big time snow – it was fun! I crawled into bed at 1:30 & just 90 min. later @ 3am Dad awoke me to help Mom go to the toilet. She did well & was steady on her feet – a hint that the day would be better.
I walked into Mom/Dad’s bedroom about 7:15 when I heard them talking. Mom was just laying there but eyes wide open. I couldn’t tell how she was feeling, but it was clear in a few seconds that she was doing well. One thing about these “good days”…she questions things. She asked Dad & I repeatedly what we were doing & what we did to her – especially asking Dad. My understanding is that she’ll get more & more upset as she deteriorates – especially towards Dad – it’s apparently always the one that’s done the most in the past. That’ll be tough to watch.
We prayed together & she jumped right in. She said she was thirsty then ate very well – some “moon pie” + a ½ piece of toast. Once she was done, I went out & scooped the end of the driveway where the plow had gone. This was sort of exhilarating. I told Dad that he should call the neighbors since she’s having a good day. I also decided it would be a good day to possibly talk to my sister & a very close family friend. I made a run to the grocery store…during which my good ol’ buddy called. For the first time since this whole thing started, I cried on the phone with him. For some reason I’ve always managed to remain stoic with him but not this time. It was good to talk to with him. He then called Dad & even talked with Mom. What a man, what a friend! At roughly the same time my 5-yr. old called me & also talked with Grammy.
For lunch Mom had chicken noodle soup that a cousin had brought over the night before. I heated it in a mug, & for the 2nd meal in a row she fed herself. I asked her if she wanted to talk to my sis, & she told me she didn’t know what she’d say. I said sis would do most of the talking & Mom can chime in whenever she feels up to it. She said she’d rather wait but then asked to call her shortly thereafter. They had a good talk. A little later I tried to call the family friend, but she was at a Dr. app’t. Finally I reached her after dinner about 6pm. I felt like I was pushing calls on her a little, but I don’t think she has many “good days” left.
I bought some flowers at relative’s florist shop & Mom seemed to like them a lot – adds some color to the room. I also took some of the family pic’s from the living room into her bedroom. I don’t think she’s noticed since her eyesight is so bad. In fact, at one point she asked what was so white at the edge of the dresser, but there was nothing there – she said she asked Dad the same thing a couple days ago, so I don’t know what she’s seeing.
I’ve gotten into the habit of pecking her on the forehead or cheek. After one such instance, she told me “you’re good at that”. So she must like that, so I’ll continue. Every time I’ve said “I love you”, she’s responded in kind.
The hospice aid arrived near 1pm & showered Mom. Dad & I helped her along, but Mom did a lot on her own as far as walking, rinsing her teeth & mouth, etc. Dad & I gathered up her sheets & put them in the wash. Mom was emphatic with me in the past – that if she became too sick to take care of herself – “keep me clean”….so I’m trying. The hospice aid recommended a hospital bed which we ran past Mom. She said “I don’t know that it’s worth it at this point” – indicating she knows her days are numbered. But I told her it’s no imposition & it’s whatever she wants. So she agreed, & we should have a hospital bed in the next day or two.
Mom ate a pretty good supper…courtesy my aunt – mashed potatoes, roast & corn. She then finally talked to Carole & was definitely ready for bed. We walked her to the restroom where she sat on the regular commode & -- when finished – asked what we were doing next. Dad & I said it was time for bed which pleased her a great deal. I asked her if she wanted to rinse one more time (she has pretty bad sore in her mouth) & she said yes. That brought us to one of our more poignant moments of the day: after rinsing her mouth & washing her hands, she carefully took the towel & cleaned up around the sink – it was Mom all the way & very precious.
One of the other poignant moments was Mom asking me this morning when this all would get better…or when it would all end. I told her it would end soon & she would be heaven. She responded: “I hope so”. I said she had nothing to worry about. She asked how she could get so sick so fast. I said it’s a bad disease. She asked if it was something she did…could she be doing more? I said: “no, not really Mom”. She seemed satisfied with that answer.
Back to the end of the day…..we rolled her into bed & she got on her side. I started the “Lord’s Prayer” which she said word-for-word with Dad & I then continued reciting with me the Serenity Prayer. We kissed her good night, & -- 4 hours – later she’s barely moved. The question is: how will she be tomorrow?
TUE. MARCH 4TH
Afraid to go to bed tonight…Mom’s 2nd “good” day in a row. It’s just a matter of time before the next crash.
I find that I break down at the most unexpected moments. At one time, I’m fine…the next moment I’m emotional – it can be a person I might see but more often it’s when I’m alone. Last night it was when I went to bed…today it was when I got in the shower(!).
I awoke to hear Dad & Mom talking, so I went in the bedroom & Mom said “Hi Mikey” & smiled. I noticed there were some eggs in the frig., so I asked if she’d like a scrambled egg, & she said “oh, that sounds good”. So I whipped up a scrambled egg & put some shaved ham in it. I showed Dad how to make it quickly in the microwave & Mom gobbled up all of it + about 5 grapes. She then walked to the restroom. I’m getting the hang of the “schedule” + what makes Mom happier. She wants to have her hair done, so I combed her hair…she’s also always thirsty, so first thing I do is get her some water with ice. This seemed to please her.
My aunt & uncle came about 9am, the hospice worker about 10am, & she gave Mom a sponge bath. This gave Dad & me a chance to take a brisk walk – 2 miles – we need exercise! I did get my plane ticket changed to Mon., so I’ll be able to help Dad through the weekend. He was very happy. Being able to help out has made me feel much better.
Mom ate a fair amount of chicken noodle soup for lunch but was in some pain & took a pain pill. She immediately broke out into a cold sweat which abated within a hour or so. Mom said that’s happened before. The hospice nurse arrived to check on Mom & to fill out my paperwork for my job. We were going to get the hospital bed, but Mom said “no”…we’ll wait.
I picked up Grandma early in the afternoon, so she could visit with Mom though Mom was quickly going into nap mode by the time we arrived. It was very emotional as Grandma was so distraught to see Mom – it was touching & sad at the same time.
Our evening dinner consisted of soup for Dad & me but Mom didn’t want that, so I heated some leftover fried chicken & baked beans which she did seem to enjoy. My 5-yr. old called during dinner & Mom spoke with (or listened to!) her for a good 10 min. or so. But Mom was then ready for bed, & she walked with only some help to the bedroom, sat on the regular toilet, sat on the bed, got her shots & then I asked her if she’d like a backrub. She said “sure” & told me to grab some lotion. I rubbed her skinny back for about 10 min. or so which seemed to agree with her in a big way.
She’s been a little fidgety tonight & just asked for a pain pill. She’s a little confused. I just hope/pray this is not the start of a downturn. I don’t want to get up tomorrow morning if that’s the case. Not to mention my dad & I have a morning appointment for picking out a casket.
WED. MARCH 5TH
- When I walked into Mom/Dad’s room this morning…Mom looked at me & said: “hello dear”.
- Mom wanted to take a shower on her own…we had to tell her she needed to wait for the hospice worker. She did shower mostly on her own as the worker just helped her get in & stood close-by.
- Mom ate a good breakfast with a portion of an egg/bacon sandwich from Hardee’s
- Dad made Mom a lunch: a small ham sandwich & a few grapes. When Dad sat it in front of her, she said “Mike, are we going to pray?” I said yes & started the “Lord’s Prayer”…my aunt joined in!...my uncle stood in the doorway & started in too.
- Listening & watching as Dad sits next to the bed or kneels next to Mom & reads cards of well-wishes that have come in the day’s mail.
- I made dinner!.....on my wife’s recommendation I threw together beef, rice, peas & cream of mushroom soup. Mom really liked the smell of the peas (of all things!) & ate a pretty good portion. She gave me some grief about saying it would be ready in 15 minutes since it took at least 30 min. I thought she was serious, so I apologized when she was going to sleep, but she said she was just kidding.
- During dinner, I told Mom I bought Dad a treat at the grocery store. I gave her a few hints & her second guess was correct: Pinwheel cookies! This is a family treat that goes way back – overpriced but delicious chocolate & marshmallow cookies. I said to Mom: I could cut some up tomorrow & you could have some…thinking she’d immediately say no but she piped up “yes, that sounds good”.
- I gave her a backrub with lotion…not at bedtime but a few hours after she went to bed – which she told me she’d prefer. I just finished, & she said it “really helped”.
- Mom didn’t seem as “with it” – she didn’t leave the bedroom today.
- Dad & I spent a little over an hour at the funeral home today picking out a casket & other relevant issues. The approx. cost: $9,800!
- From Mom/Dad’s perspective: we awoke to more snow…didn’t amount to much.
- A restless evening so far for Mom
THU. MARCH 6
This ominous warning today from the hospice nurse: “Your mom is weaker. She’s rallying right now, but you must know she’ll probably fall off quickly once you leave.” I told her I figured such & even if I stayed, she’d eventually physically not be able to maintain this level.
Mom did have 2 bowel movements this morning! She brushed her own teeth then showered again while sitting, but the hospice worker just stood nearby after helping Mom in & out of the shower. Mom then sat in the living room on the couch. A co-worker came by at lunchtime…a close family friend who now lives out of state called…as did Mom’s niece & another very dear friend from Florida.
But Mom seemed to be slipping some today. She had a cold sweat several times & ate much less. I cooked a good dinner – one of her favorites in the past – pork chops, sauerkraut & dumplings, but she only ate a few bites. She was having a hard time just getting food on her fork. I probably should have given her a spoon. Food seemed to frustrate her today. She got a grape stuck this morning during b’fast between her dentures & gum, & it must have taken 5 min. to get the darn thing out as I helped by pushing on the outside on her cheek. It was rather pitiful, & she wanted nothing to do with the rest of the grapes. It seemed to set the tone for the day. Mom also had a hard time with what time of day it was & each time we awakened her for lunch or dinner, she insisted she had just eaten.
She does seem to be sleeping better tonight. I gave her a short back rub & soon she was lost in sleep. It was announced today that Patrick Swayze has pancreatic cancer & won’t live much longer – just 55 yrs. old! Just one more reason to be thankful for how long I had my mother in my life.
SAT. MARCH 8th
Miracles never cease!:
- Y’day as our relatives joined Mom, Dad & I for dinner, my uncle piped up: “want to say prayer?” We all joined in powerful prayer. This after Mom told me she wanted to “share & enjoy dinner with her sister & brother-in-law”. Just one more example of Mom stepping up to the plate.
- A cousin visited this morning! His oldest son – only 15 – talks of Mom somehow like he knows exactly who she is.
- Mom told me this morning: “You need to shave.” She’s right…I’ve let my goatee grow since I’ve been home.
- A good friend of the family called & will visit tomorrow…we haven’t seen them in ages. What memories from Holiday Lake!!
- Mom had a rough morning but still visited with friends & family on the phone as best she could.
- Just when we thought Mom was truly slipping…she has a “rally dinner”. She ate leftover dumplings & pork – a nice helping & said “it tasted good”. As I laid next to her & rested my head on her shoulder, she said “do you have a headache”. I said “no, just resting”. She proceeded to pat me on the leg for a couple of minutes. I will never ever forget that moment.
- She told me as she was eating: “I’ve never had to fight anything like this”.
- Dad snapped a photo of Mom & me laying in bed as she ate – priceless!
- At bedtime…after her shots & pills, I said to Mom “do you want a backrub?” She said “yes…it’s her favorite time of the night”. I said my favorite time too. As I rubbed lotion into her bone-filled back, I hummed “Amazing Grace”. She seemed ready to sleep.
Asides: A day of work & accomplishments: I vacuumed the foyer, emptied the dishwasher, washed Dad’s minivan & vacuumed it, swept the garage, vacuumed the carpet rug in the garage, my best friend called – nice conversation per the norm & visited Grandma. My sis was upset as Mom didn’t seem particularly attentive during her phone call. I told her she needed to limit phone calls to a few minutes & that the “best days” were definitely over. Mom continues to pray strongly. She says she wants to take a shower tomorrow – should be interesting! I plan on putting on a pair of Dad’s swimming trunks & taking on the challenge!
SUN. MARCH 9TH
Mom is now 1 day past the “10 days left” from the hospice nurse. She had a good day today full of visitors. Very good friends that were neighbors at our lake house as I was growing up came to visit. A cousin came late in the afternoon & was quite emotional & heartfelt in his words with Mom. He mentioned to her that he wasn’t one to pray a lot…that he feared coming over to see Mom in her current condition but that he was glad he did – powerful, good stuff.
What a start to the day! I helped Mom shower. Not nearly as bad as I thought. Much like the past week, you just get in there & get it done. She was pretty strong which helped a great deal. I shampooed her hair, soaped her body down with body soap, dried her off & the put lotion all over her body. She seemed most gracious & then proceeded to eat eggs & ham for b’fast, a good portion of leftover pork, *** & dumplings & fruit for lunch & only some of a difficult-to-eat Maidrite for dinner. I think she’d call it a pretty good day.
Dad & I went to church while my aunt & uncle sat with Mom. Church has become much easier & serene. I talked with a number of people about Mom & had no problem with it. It’s been a good & powerful week. I’m better for it, stronger & more at peace with the whole thing. It’s not easy, never will be, but I think I’ve come to a certain amount of peace & understanding with it all.
So tomorrow I leave about 8am. Dad is clearly going to miss me & has told me such. I told him I’d be back soon. He knows, unfortunately, that’s the truth.
TUE. MARCH 11TH
Back in the saddle at home & coming to terms with reality(!)…of everyday chores at home & soon – work. But I have somehow entered an incredible, virtually inexplicable calm & serenity regarding Mom’s health & soon-to-be death. I guess the best medicine was 10 days at home caring for Mom & working with Dad on all kinds of things. The time home was priceless & will stay with me forever. I’m not about to say that when Mom does pass, I won’t be sad or even devastated…obviously the time will be difficult & a great hole will be in my heart that will never completely go away. But I am in a far better place than say, 2 weeks ago. A lot less anger, controlled sadness but far more composed & far more understanding, I guess, of the situation. One common denominator I heard time & time again from people I spoke with back home was: “She (your mom) is the nicest person I’ve ever known.” Another one: “you don’t have to worry about where she’s going”.
So leaving Mon. morning was not nearly the burden it could have been. I think it was harder on Dad. But I told him he’s doing everything just right…that he’s in a better place than, say, 6 months ago. He agreed. As for my graceful exit, Mom was sitting up after having a portion of kolache & quite a bit of fruit for b’fast. I told her it was time for me to go back home. We hugged for at least a couple of minutes. She applied some pressure with her hug…I applied lots. I had tears running down my face but wasn’t bawling! I told her I’d be back in a few weeks (mid April)…that I appreciated our time together. She expressed likewise. I asked her if she had any requests, wanted to say or do anything, & she said “no”. We prayed the “Lord’s Prayer” & “Serenity Prayer”, I kissed her on the forehead, she said “thank you, I love you”. And that was it. Dad was upset upon dropping me off the airport, but I’m confident he’ll be o.k….we’ll be o.k. I told him that. When I got home, I told my wife just how powerful the 10 days was…that I felt ready for Mom’s passing…that I wished she could have experienced it with me – like when we went to Africa together about a year before getting married. You can’t experience a place like Africa without your life partner & expect them to relate to your life-changing experience. Of course, in this case, it was impossible for us to experience the 10 days in Iowa together, but she said she -- & I believe does – understands my experience. It’s hard to put into words, but what I experienced was deep, honest & pure. Maybe a cleansing of my soul, I guess you could say or something like that.
So Mom continues to rally & is now even stronger than when I was home. Y’day she came out to the table for lunch AND dinner with Dad & spent a good hour out of bed. Dad said she ate quite a bit of food. This is the first time she’s eaten at the table in at least 3 weeks. I told Dad on the way to the airport that I wonder if Mom doesn’t have it in the back of her mind that she wants to make it to when their good friends get back from Australia (about 2 weeks) as well as her b’day & their 49th anniversary (April, 14 & 15th respectively). That’s a tall order, but we’ll see. She does keep talking now about becoming stronger. I think she’s been quite buoyed by coming out of these “episodes” not to mention people visiting & showing they care – people being brutally honest with her about how sad they are regarding her condition…how much they’ll miss her…how much Mom has done for them.
We’ll see how long this lasts, but POWERFUL is the word of the day & summarizes Mom’s illness & our journey.
THU. MARCH 13TH
Mom’s rally continues & has become even stronger. Since Mon., she’s been going to the table to eat & sometimes sitting there for up to an hour. She’s even started reading the paper – the first time since about Oct.! I’ve talked to her each day since I’ve been home. She still sounds a little weak but pretty darn good. Dad’s feeling much better as is my sis, but I’ve (“Mr. Realistic” or some might say pessimistic – I prefer the former) warned them that this can’t last forever. But it is nice.
I was at a Salvation Army fundraiser today & several there knew of my Mom’s illness. Some, however, did not realize the seriousness. One lady asked how Mom was doing. I replied “better at the moment”. She said: “she’ll get better, right?” I told her the illness was terminal, her reply was “then may she be comfortable”. I thought that was a great way to put it – very eloquent. So many times people – including myself – aren’t sure how to react when told of such a serious condition. I’ll have to remember that one.
MON. MARCH 17TH
Another experience to add to the unexpected -- bordering on amazing…powerful at the very least. Today I golfed in the annual media day at TPC, Sawgrass. A couple of weeks ago I found a ball marker Mom gave me as a stocking stuffer for Christmas at least a year ago if not 2 yrs. ago. Well, this morning I saw it in my organizer & stuffed it in my pocket not thinking twice about it. Well, on par 3 #13, I bagged a hole-in-one! A shot that ricocheted off a tree none-the-less! I called Mom late in the afternoon & asked her if she remembered that coin & she said she did – she even described it. I told her she had to be there today when I hit that golf shot.
She sounded pleased & happy. She never played the game much & really only tried to give it a more serious shot once Dad retired, & they wintered in Florida. True to form, Mom gave it her best shot & at least feigned interest because she knew how much it meant to Dad. And Dad always told her how much he enjoyed her company on the course, always encouraging her. The classic two-some. Anyway...I’m overjoyed, & I can’t help but think Mom helped that ball bounce just right (to the left) today – right into the hole.
SUN. MARCH 30TH
The hospice nurse called my sis & me Wed. Apparently Mom asked the nurse to do so. Not a good sign. Mom is getting an inkling that the end is not too far away. The nurse: “Your mom is o.k. She’s actually doing pretty well. But I just wanted to update you. She’s a little weaker, & I think the next time I call you it’ll probably be to come home. Probably in 2-3 weeks.” Well, no surprise really which is exactly what I told the nurse, & I thanked her for taking the time to call.
Mom had a couple of “bad” days in a row. She didn’t get out of bed & ate very little. Dad told me yesterday morning “I think this might be it”. Mom has pretty frequently been talking “out of her head” – especially at night. I told Dad that’s to be expected & will probably get worse. A hospice nurse is coming to check on her today…the first time a nurse has stopped on the weekends.
Dad seems to be getting pretty stir crazy. He’s asked the hospice volunteer to stay a little longer, so he can get out some. Overall I think he’s doing o.k…maybe a little more resigned to Mom’s imminent passing. The weather continues to be rough on him too – another 3-4” of snow just a few days ago! He is in for a busy weekend. A relative that they hadn’t seen for a long time visited Sat. evening. I haven’t seen her in yrs., & Dad was surprised she hadn’t visited yet. Dad’s sis is spending Sat. afternoon through Mon. in Toledo & will stay with Dad. It’s Grandma’s 92nd birthday Mon., so there will be a celebration at the nursing home.
As for me…I continue to hold up much better since my 10-day trip home early this month. What has a tendency to “get me” now is the reaction (sadness) of others – not necessarily my own. When I see others anguished over my mother, it does the same for me. So I don’t know how that’ll come into play at funeral time. Otherwise, I’m tired but staying busy with typical day-to-day work & family stuff. I have talked with several people about my experiences during this whole journey, & I find that satisfying. It seems to be interesting to others. A co-worker has been recently diagnosed with breast cancer, & we talked at great length a few days ago. I think it was inspiring for both of us. Her husband died of rectal cancer 37 yrs. ago leaving her & 3 kids alone – including a 2-yr old. What a story – she’s very strong & determined … cancer has touched so many lives in so many different ways.
Dad & I were just talking a few days ago about an article written by the Associated Press regarding cancer costs – costs that Dad definitely can relate to (he has a huge folder full of bills & insurance info.):
WASHINGTON - You've just been diagnosed with cancer, and the doctor is discussing treatment options. Should the cost be a deciding factor? Chemotherapy costs are rising so dramatically that later this year, oncologists will get their first guidelines on how to have a straight talk with patients about the affordability of treatment choices, a topic too often sidestepped.
"These are awkward discussions," says Dr. Allen Lichter of the American Society of Clinical Oncology, which is writing the guidelines. "At least we can bring this out in the open."
It's a particular issue for patients whose cancer can't be cured but who are seeking both the longest possible survival and the best quality of life — and may be acutely aware that gaining precious months could mean bankrupting their families.
The prices can be staggering. Consider: There are two equally effective options to battle metastatic colon cancer, the kind spreading through the body — but one costs $60,000 more than the other, says Dr. Leonard Saltz of Memorial Sloan-Kettering Cancer Center.
What's the difference? The cheaper one, irinotecan, causes hair loss that makes it impossible for people trying to keep a job to hide their cancer treatment, he explains. The pricier oxaliplatin can cause nerve damage in hands and feet that might make it a worse option for, say, a musician or computer worker.
Saltz offers a tougher example: A drug for pancreatic cancer — an especially deadly cancer with few treatment options — can cost $4,000 a month. Yet while Tarceva has offered some people remarkable help, research suggests that extra survival on average is a few weeks.
"Is it a good investment, a high-risk investment, or buying a lottery ticket?" is how Saltz puts these choices.
Drug prices are a growing issue for every disease, especially for people who are uninsured. But cancer sticker shock is hitting hard now, as a list of more advanced biotech drugs have made treatment rounds costing $100,000, or even more, no longer a rarity. Also, patients are living longer, good news but meaning they need treatment for longer periods. The cost of cancer care is rising 15 percent a year, Lichter notes.
Make no mistake: Some of these newer drugs have greatly helped some patients — Gleevec, for example, has revolutionized care for a type of leukemia — and the prices reflect manufacturers' years of research and development investment.
Also, drug companies do donate a certain amount of medication to prescription-assistance programs that provide them for free to patients who otherwise couldn't pay. Since 2005, nearly 5 million people — cancer patients and people with other diseases — have been matched to such programs through the drug industry's "Partnership for Prescription Assistance."
But few patients get a Gleevec-style home run, and there's very little research that directly compares competing treatments to guide cancer patients on which might offer the best shot at survival for the money.
"As long as a therapy provides a benefit, it will tend to be offered to patients. Whether it's a small benefit or a moderate benefit, it may be offered with the same level of enthusiasm," says Dr. Neal J. Meropol of Philadelphia's Fox Chase Cancer Center, who is leading the panel writing ASCO's new guideline on how to weigh treatment costs.
The idea: treat cost essentially as another side effect to weigh in choosing a therapy. Meropol has watched patients do those calculations on their own, like the colon cancer patient who asked to switch from oral chemo to cheaper but more laborious intravenous chemo, or the woman who refused a pricey anti-nausea drug that would make her chemo more bearable.
Even if doctors want to discuss cost, they may not know it — it's not included in treatment standards. At a meeting of the standard-setting National Comprehensive Care Network earlier this month, Sloan-Kettering's Saltz and other doctors urged adding chemo prices to those treatment guidelines.
"If there's a need to spend it, let's talk about it. If we can do it just as well less expensively, I think doctors should know that and be able to make a decision," Saltz says.
Even the well-insured are feeling the bite as patients are having to shoulder a higher portion of the bill.
When Medicare began its Part D prescription coverage, retiree Helen Geiger of Whiting, N.J., paid for a premium plan and put it to good use when she was diagnosed with multiple myeloma, a blood cancer. She said the plan listed the cost of her dose of Thalomid at $5,500 a month but her copay was $60 a month.
In renewing the prescription plan last year, the 71-year-old Geiger didn't notice that Thalomid coverage had been changed. It now was classified a specialty drug, costing a $1,051 monthly copay that she couldn't afford. She went several months without the anti-cancer pills, as her doctors at Philadelphia's Fox Chase Cancer Center and her family appealed to the insurer and then scoured charities in hopes of finding her free or cheaper drug.
"You don't need this kind of stress when you're sick," says Geiger, who finally stumbled onto a prescription assistance program that provided her free medicine.
MON. MARCH 31ST
Another nice surprise today. The girls got cameras for Christmas & took them to Iowa for our trip at Christmas. My wife got to downloading the pic’s today (literally hundreds!) & low & behold there are a bunch of super ones of the entire family including Mom. It’s amazing how I thought of her looking so bad then, but it was nothing compared to the last time I saw her. But I’m really enjoying the photos & they’re my screensaver now.
As for Mom, she continues to slip. The hospice nurse called me today to report it’s 8 sec. between her breaths at times. She said normally that would mean death is close, but she says Mom is “different”. I kind of chuckled. The nurse said it could be days, but it could also still be weeks. Dad said she didn’t get out of bed today & is doing “strange things”. But she did end up eating quite a bit of dinner & finally gave in to Dad feeding her. She had no problem with me feeding her when I was home but doesn’t apparently care for Dad to do so, & I’m not sure why. The hospice nurse – for the first time since she entered the picture – will now visit Mom every day.
A couple of things have come to my mind the last couple days:
n I’ve been thinking back to that last time I saw Mom, sat on her bed & said “good bye” in March. I’ve been thinking maybe I should have said more, taken in the moment more. I thought I did….we hugged a long time, said “The Lord’s Prayer” together, asked her if she wanted anything of me & told her I’d see her again. But – for whatever reason – I’ve just started to wonder if it was enough. I’m trying to relive that moment a lot now. I wish I had video of it, so I’m trying hard to replay it in my mind so that I have a mental video of it forever.
- As strong as I’m feeling regarding Mom now, I do find that other people’s sadness makes me sad – more for them , I guess – Dad, for instance…Grandma, my kids, coworkers & others.
It’s Grandma’s 92nd birthday today…my wife & I are off to Orlando Wed. for the National Hurricane Conference.
TUE. APRIL 1ST
This poignant conversation with my 7-yr.old last night: “Dad, will we go back to Iowa sometime soon?” Me: “Probably pretty soon. It’ll depend on Grammy.” My 7-yr. old: “I mean will we go back real soon?” [she has a melancholy look with wide, somewhat sad yet inquisitive eyes] Me: “It’ll depend on Grammy & whether or not she gets better or not. But you realize she won’t get better?” Her: “But she might, right? I mean maybe a percent better…like 50 or 100. [her voice trails off some]…a 1,000% would be the best, but some percent would be good right, Dad?” Me: “Yes, any percent would be good. But understand, honey, Grammy is not likely to get better. We’ll at least go visit Grampy”. She looked at me then stared down at the floor then sat back in the couch. That was the extent of it. I don’t know if I answered her the way I should have, but I liked her thinking … her compassion for the situation.
WED. APRIL 2ND
I awoke this morning to a dream that I was hearing Dad crying. But I was home in my own bed. I made my usual morning call a couple of hrs. later & all was “o.k.” Mom had a half a banana for b’fast but is in quite a bit of pain – namely her right hand which is very swollen. The nurse believes this is fluid build-up & is “common with this kind of cancer”. So the pain is worsening, Mom is not wearing her dentures anymore & Dad says she is now unbelievably thin. I can only imagine how thin given how I thought she looked when last home. I asked Dad if Mom is still praying. He said they last prayed the rosary together Fri. but that she’ll still try to say the “Lord’s Prayer” with him. She could do some semblance of the sign of the cross through about Mon. (sometimes multiple times!) but now doesn’t even have enough energy or motion or is in too much pain to even muster the sign of the cross.
THU. APRIL 3RD
The nurse this morning wasn’t able arouse Mom. Her & Dad moved a hospital bed into the house & somehow squeezed it into the bedroom. As they lifted Mom into the hospital bed, she awoke & asked what they were doing(!). I called late in the afternoon, & as I spoke with Dad he decided – on a whim – to ask Mom if she wanted to talk to me, & she replied “yes”. So Dad held the phone to her ear, & we talked a bit. I told her I loved her, & I said the “Lord’s Prayer”. She didn’t join me but did know we were praying & told Dad so. She didn’t eat anything today, so we’ll see if it was a bad day or the beginning of the final part of this journey.
And, of course, it’s snowing again. “Huge flakes” according to Dad & accumulating fast – the 5th month in a row with measurable snow! Dad won’t be spending much of next winter in Iowa, that’s for sure.
FRI APRIL 4TH
“THE CALL” – I had just booked a flight home for tomorrow morning. I called Dad to give him the details. He hastily picked up the phone, said: “Mike?” in a frantic voice. I said “yes” & he said very emotionally & choked up: “It’s over. Mom just passed away”.
And so this is it. I’m still in Orlando at the Nat. Hurr. Conference. It concluded this afternoon, but my wife & I were staying ‘til late Sat. Dad & the hospice nurse called me this morning: “Your mom is in the final stages of death; she has little or no blood pressure, & her heart rate is very fast. Your mom is actively dying.” It’s that call that precipitated the plane reservation for tomorrow morning. My phone call to Dad was surreal & chaotic. I can’t honestly remember every bit of the moment though I’m trying to recall it, so I can “file” it for the rest of my life. My reaction: I kicked the bed, I cried a bit, I don’t remember exactly what I said to Dad. My wife knew what had happened. We had a good hug/cry after I hung up with Dad. I then proceeded to call the list of names Dad had provided me. I don’t know how many exactly but must have been at least 30 – most I knew, some I didn’t (fellow snowbirds). I called Grandma & once she heard my voice she said (& repeated it several times) “we lost our beloved Connie”. Simple but eloquent I thought afterwards.
It’s hard to organize my thoughts at the moment. I hope to come through for Mom at the prayer service & funeral like I want to…like I’ve imagined. My wife will drop me off at the airport at 6:30am & she’ll fly with the kids Mon. then return to Jax Sat. I’ll stay ‘til at least Sun., the 13th but might stay ‘til the 14th which would have been Mom & Dad’s 49th Anniversary. And…oh…I won’t be able to sit & tell/discuss with the kids – my wife will have to do it on her own. I won’t see them until Mon. My sis will arrive Sat. afternoon. Dad wasn’t alone at the time – my aunt & uncle were there. Dad knew death was closing in & told me he peppered her with kisses all morning long. What a picture & no surprise – the consummate husband & father to the very end. Dad was just getting ready to go get a haircut somewhere near 12:45pm & checked on Mom before he was going to leave. She’d stopped breathing (he was out of the room for just a minute or two). Mom hadn’t closed her eyes in 2 days. Even when Dad or the nurse tried to shut them, they’d pop open right away. But this time when Dad closed her eyelids, that’s the way they remained. And so it is.
I doubt there will be much sleep tonight…not anytime soon I imagine. No matter how much one prepares or thinks they’re prepared, the actual MOMENT IN TIME is simply virtually impossible to be prepared for. Mom…rest in peace. I miss you dearly.
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