Hospice Info
Merle has indicated he would like visitors and cards. He is not up to talking on the phone now, however. The address for the facility is:
Andrew T. Parker Hospice House
2160 Fountain Drive
Snellville, GA 30078
room 102
I’m Not Dead Yet (I.N.D.Y.)
I have Pancreas Cancer, but I’m not Dead Yet!
A New Stage in the Journey
Merle’s mental and physical health have deteriorated rapidly over the last two weeks, and he is entering hospice today. He has developed severe edema because his body is not absorbing protein so his vein walls have become permeable. As a result his legs and abdomen are very swollen with retained water. At the same time he is suffering from dehydration because there is too little water circulating in his blood. This imbalance in his system makes it hard for him to walk and worse of all has led to trouble concentrating and alot of confusion about where he is, what day it is, who is with him, etc. (Hence, I, MaryBeth, am writing this entry.) We saw Dr. Kauh this morning and he recommended Merle enter inpatient hospice to evaluate his needs. He may come home again depending on how things progress.
From the steps of the Capitol
Advocacy days for the Pancreatic Action Network has come and gone. We got to talk with some of our leaders and everyone seemed receptive to our message: We need the National Cancer Institute to develop a strategic plan (logic model) describing how NCI is going to deal with the increasing prevalance of the most deadly cancer.
MaryBeth insisted that I ride in a wheelchair because of all the walking and despite my grousing, she was right. I was exhausted just talking at the 5+ meetings we had.
I found that I was in a unique position at Advocacy Days this year. I am a survivor, but I think I was the only survivor there who was also dealing with an active recurrence of the disease. I’m not sure people knew exactly what to do with me. Do they say congratulations on beating the beast or , “You did it once, you can do it again!!’
The content for the Advocacy Days was essentially the same as last year: try to get you legislators to agree to cosponsor either the house or senate version of the Pancreatic Cancer Research & Education Act. Exciting this year is that we got to meet with several of our congressional members rather than their legislative assistants.
On the health front, it’s just so disappointing that I NEEDED a wheel chair while in DC; or help carrying the bags up t my room. I said this once already, this round of fighting PC certainly makes me feel like a cancer patient (but I’m certainly not ready to die yet). As in the beginning, though, my game plan is pretty much the same: Take each day and live life to its fullest. Spend lots of time with the family making memories (and then on the yucky side, MB and I need to do a better job preparing for the future — transitioning from my paying bills to her doing so.
More later
Merle
Doctor! Doctor! Give me the news…
My last post was full of downers of self doubt and sadness, so I thought I would post something upbeat for the holiday weekend. My family is vacationing with MaryBeth’s family (parent’s, siblings, sibling’s spouses and most importantly for MaryBeth, sibling’s newboarn infants). MB loves to hold and play with babies, so she has a 2 to keep her busy this week. It’s was great to watch her with them yesterday as she had a HUGE smile on her face just holding the baby and letting it fall asleep in her arms.
Healthwise, I met with Dr. Kauh on Thursday. The news wasn’t great. Essentially, we both agreed that I have worked through 3-4 treatment regimens to slow down or stop my tumor growth and nothing has really worked. My tumor is now a cm smaller than the original tumor and is growing around and getting tangled up in some very delicate arteries. Dr. Kauh is going to get me into a Phase IB clinical trial which will look at the potential efficacy of a new drug for treating cancer (they are not sure exactly which cancer it will help: pancreas, thyroid, or lung).
The hope is that this experimental drug holds some promise, but if now, the next step would be to set up home hospice care. Essentially, the hospice workers deal with the issues surrounding people who are dying (not that I am planning on doing so in the near future, mind you). Instead, they would come by daily (or more if needed) to check on me, provide medication as needed and all in all just be supportive of the transition we are going through. One benefit is that MB would have to worry less about taking care of me, as the hospice nurse would be able to take on someone of those duties, leaving MB and I more time just to enjoy being together.
A friend of mine, with whom I was talking about this yesterday, boiled it down for me. If the Phase IB trial doesn’t work, we’ve essentially exhausted palliative treatment for me. I have no sense how this will affect my prognosis, but truth be told, I have too many trips and plans in the works for me to die any time soon.
Next month, MB and I are traveling to DC for PanCan Advocacy Days. I was going to go by myself, but MB felt it would be helpful to have someone there to look after me (not to mention that she is committed to the cause, too). In July, the family and I will be flying up to NJ to visit with my mother and attend her annual blue berry festival. For those who are long time readers of this blog, you may remember that Mom owns a blue berry farm, and she has a party each year at which she invites friends and family members to come pick blue berries and enjoy in some revelry.
In August, MB and I decided to join my family in Wildwood NJ for the annual Hamburger family get together. We have been unable to attend for years and years because the trip to the beach occurs the week after school starts for our kids and we couldn’t see pulling them out of school to go to the beach. This year, however, given the situation, we thought we could pull the kids out so that we can all go join my family and my step mother’s family at the beach. Sometimes special circumstances call for special action.
So as you can see, we have a lot to look forward to over the summer. I’m getting excited about all the stuff coming up. And we are doing all this to continue to make memories that my kids can have of me when I am still generally healthy.
This past week was horrendously busy. It doesn’t sound like a lot, but I worked extra long days for much of the week and I am exhausted. Last night I think I ended up going to bed before 8p because I was so tired. I hate that my disease continues to affect me so that even simple tasks (working, driving, etc.) wear me out. I am so glad that my supervisors at work understand my situation and have encouraged me to take care of myself (e.g., work for a long as I can and then go home). It is hard for me to accept the reality that things are only going to get worse, with me having less and less energy which will impact all aspects of my life. I miss being more involved in Karate and Scouting, but I just do not have the energy to do either, really.
As much as this posts sounds like I’m complaining, I’m not. I getting used to my “new normal” reluctantly. I’m getting used to it, but that doesn’t mean that I have to like it.
Sorry for the long ramble of a post. I will post more later. But for now, the day is just starting out, it’s sunny and warms outside. I’m on vacation with my family and MB’s family, and things are good. Much to be thankful for today.
Thank you for all your well wishes, thoughts, and prayers. I say it all the time, but I truly mean it. I love you all and thank you for your support and love.
Merle
Great weekend
Sorry for not having written much over the past couple of weeks, but I have been a busy puppy. The trip to Montreal was okay; I was supposed to go there with my supervisor to meet with one of our grantees to discuss analyses and paper writing (a lot of what I do in my job). Unfortunately, my supervisor got sick and couldn’t go and our grantee was not feelin very well, either (though we did meet for about 3 hours). It wasn’t a total loss, but I was wiped out after all the travel.
THe following week, my family and I went on a trip during the kids spring break. At the last minute, MaryBeth and I decided to take a cruise and we found one that sailed from Port Canaveral to two islands and back. The boys and I sn0rkeled together for a couple of hours (before I pooped out). MaryBeth and my daughter went shopping and my daughter found a beautiful purple dress that I believe she has worn every day since getting it (except for the times MaryBeth has been able to pry the dress off her to get it into the wash).
On the ship, my daughter played in a program with other kids her age. My younger son hung out in the teen lounge. My older son stayed in the stateroom watching TV and playing his gameboy. MaryBeth spent time in the casino. And I got the opportunity to layout on deck and people watch and read my book. We spent the most time together at meals, though, and everyone in our party took advantage of the “all you can eat” mantra onboard (even I gained 5 lbs on the trip, but I”m sure my weight will be down next week at my doctor’s appointment). My older son, in particular, was in heaven when we went to the buffet and he could make as many double hamburgers as he wanted. His consumption of these burgers are the stuff legends are made of. (I think he could definitely be a guest contestant on Man v. Food).
After getting off the ship, we visited with MB’s grandmother, my step-mother, and my best friend from college; all great visits. We only had a couple of days at home before family started coming in. We decided to host a seder at our house and my mother, brother and his family were able to join us. It was great having them around. My cousin, Martin, flew down for the day on Friday and it was just great to see him. I wish I had half of his sense of humor and wit. My brother and his family left on Sunday, but then my sister and one of her daughters came down to visit with us (and do some traveling around coastal Georgia). It was great fun just sitting around and chatting. My sister left on Tuesday and my Mom left on Wednesday.
As you can see the past couple of weeks have been a whirlwind of excitement. I think the cruise helped to make some fun family moments and I felt incredibly loved as my family came down to celebrate with me. As always, I continue to tire easily. I’m still having bouts of nausea and diarrhea, and I’m starting to get more aches and pains. But for all intents and purposes I feel fine. If I’m nauseous, not so much, but I think that is simply becoming part of my new “normal.” I have cancer and as a result I will be nauseous from time to time.
I’m in a good place right now. I’m not obsessing about my cancer, and I am looking for ways to have our family do things together. Yes, sometimes I am in a darker place, but for now…for today…I’m good (and that’s a good thing).
As always thank you for all your love and caring. They mean a great deal to me.
Merle
A milestone
I have spoken on this blog several times about my battle with my weight. In May 2000 I weighed over 260lbs. Through the program at Quick Weight Loss Center and my motivation, I was about to loose 160lbs in a year. However, my body could just didn’t like being under 200lbs. I fought and fought, but eventually stabilized at 205. This past fall, I was bemoaning that 205 had become 240 and that I needed to do something (cue the pancreatic cancer diet).
Today, while getting some fluids I weighed in at 174.5 (a 10lb loss in a week — not good, I’ll grant you, but what’s a nauseated guy to do?). Concern about my weight not withstanding, I can now honestly say that I am less than half the man I used to be. I have to say, though, that I don’t think I look particularly good at 175. I’m pretty gaunt and have little or no energy to speak of. I spend the vast majority of my day either on my couch or in my chair staring. Today it took me 25 minutes to get the energy to get up and get some medicine and a drink. I’m not in a particularly good place right now.
I did go through my radiation simulation yesterday. The plan is to bombard the tumor with high dose radiation (while avoiding other organs in the hopes of shrinking it. Side effects, fatigue, nausea, vomiting — all the biggies. My first session is next Monday (and it may only be one session, so we’ll have to wait and see).
Sorry this is not a more perky posting; I’ve been short on perk these last couple of weeks. Perhaps if I take a break from the chemo, I can get my perk back.
Merle
An old request
As I continue to deal with my chemo, I’m finding myself getting more and more frustrated when people ask how I’m doing. So I wanted to resubmit a request from early on in my journey. If possible, ask, “How are you doing today or How are you doing now?” It may seem trivial but to me it is a much less nebulous quest than how am I doing.
As I deal with this new round of chemo (which is better this time around — the docs lowered my dose) it is just easier for me to say to people that I’m doing okay (or not) at the moment. Last night I was doing fine until I decided to try and drink some water – then I was decidedly not okay (leaning over the porcelain throne emptying my stomach’s contents). Things change rapidly. I’m just saying.
Please don’t take this as an admonition. I just want people to know what types of communication work best for me. Thanks for all the support and love. I am even going to try and go to work today, so I’m getting adventurous. 
Merle
A little good news
One of the problems with all this sickness stuff I’ve been dealing with is trying to find an appetite with which to actually eat my meals. Well, I found it yesterday and had a real, honest to goodness dinner (chicken, noodles, broccoli, and a brownie even). I am still amused when so much effort is put into my eating. Never in a million years would I have ever suspected that eating would be a challenge for me. When I’m not up to eating, I’ve been drinking Boost (or Boost milk shakes). Let’s just say they loose their appeal quickly.
In other news, I’m on the first day of my week off chemo (say Yeah!!!). I should be feeling better shortly (presuming the vast majority of my symptoms are from the chemo rather than some random bug. This is a good thing as I have a conference to go to shortly.
Thanks for all your support and well-wishes. Every day is challenge, but they are easier knowing I have such great friends and support behind me. You all mean so much to me. Thanks!
Merle
What a couple of months
I profoundly apologize about not posting these past couple of months. For those interested, TumorPalooza II was a blast and everyone with whom I have spoke had only positive things to say. I do have some pictures and I will do my best to get around to posted them.
Lots of stuff has happened since TP2, but the rest of the August and September, however have been spent largely dealing with Dr. Kauh trying to figure out the cause of some ongoing pain that I have been having. The pain started as just a nuisance in both my back and abdomen, but the more I let it go, the more uncomfortable it became.
Now if there is anything that you all should know about me is that I tend to be stolid (meaning, I try very hard to deal internally with pain and down play its strength). There have been multiple times that MaryBeth and I would disagree about how much pain I’m in (with MB always saying that I am in more pain than I report). I guess, this is something that my doctor picked up on, because when I did finally contact him about my discomfort, he paid attention (indeed, he said that I rarely complain about anything, that when I do, he pays attention).
Because of the continued pain, we moved my next set of scans up from December to November and we began playing around with pain medications. The docs wanted me to take Lortab (Hydorocodone and acetaphin) to deal with any pain. In addition to the lortab, the docs put me on slow release morphine. Over the past 4 weeks, tough, the dosage of morphine has slowly been increased.
The pains in my back and abdomen were addressed with the new pain regimen, but I started acting funny. Specifically, I was experiencing “altered mental states.” In short, I would fall asleep, go straight into REM sleep and then act as if the dream I was having was “real.” It seemed normal at the time, but apparently, it scared my kids and the children of friends who visited.
Because of this symptom, MaryBeth took me to the ER and I was admitted to the hospital and I was admitted because altered mental state. I was in the hospital from Monday until Thursday and was able to get over the mental state issues by Tuesday. The docs decided that something must have changed in the past couple of months that has lead to a change in how my body processes the medication (exactly what that change is, is still up for grabs). I’m on a different med regimen at the moment and I guess it’s working — I haven’t had any psychotic breaks.
Long time readers of this blog, though, know that the my ongoing concern about my cancer was the lack of fairness that I did not experience the dramatic weight loss that others who had PC had experienced. Well, “good things” come to those who wait, I guess. Over the past 4 weeks, I have lost over 30 lbs and I continue to have appetite issues; I just don’t want to eat. The big excitement is that today is the first day that I actually ate breakfast food (egg, fruit, and yogurt). My typical meals have consisted of Boost drinks. I think my weight is closing in on 200lbs (which I haven weighed since 2001. Who ever thought that people would have to encourage me to eat (or that I would be considering discussing an appetite stimulant to add to my regimen, so that I might eat more.
As always, this has turned into a stream of consciousness posting. The major take away messages are: (1) I am still not dead yet; (2) I was hospitalized earlier this week, but am back out and seemingly okay; (3) I have a meeting with Dr. Kauh on Tuesday to discuss the results of my scans from yesterday; and (4) I am quickly becoming less of a man (physically) than I used to be.
My next doctor’s appointment is on Tuesday to review the latest blood tests and MRI scans. Hopefully, good news all around. Let you know when I know something.
Merle
September Check-in
Hello to whomever has continued to stick with me through this (less informed) aspect of my journey (roughly translated: thank you for continuing to read my blog, when I don’t post much). I still have to go through the pictures from TumorPalooza so I can post a slide show and let you all see the fun and hilarity that was experienced by all who attended. Soon (I hope). Soon.
As for my health, well, that’s been an up and down roller coaster. Two or three weeks before the Palooza, I started having both abdomen and back pain. Nothing major, but enough that I wrote my oncologist about it and he moved up my scans because, “You never complain, so when you do, I take note.” The oncologist put me on extended release morphine (one 15mg pill in the morning; and one 15mg pill in the evening. I was supposed to take that and then use vicodin for break through pain. Well, apparently, morphine and vicodin makes for a powerful cocktail as I was a bit “woozy” at work. As my wife likes to point out, I feel asleep during a meeting with my branch chief (who was totally cool about it, but still…)
The long and short of it is, my wife drives me into work and I try to beg, borrow, or steal a ride home in the afternoon. (Seriously, it means a lot to me that people were so willing to give me a ride. Thanks Matt, Kevin, and Lynn.) Eventually, I realized that I didn’t need the vicodin all that much and the morphine by itself doesn’t woozy me up as much, so I was about to drive myself into work again. Unfortunately, I began to develop a tolerance to the morphine and I told my oncologist about it and his solution was to double up the morphine at night. I did that for the first time last night and let’s just say that I woke up incredibly “woozy” this morning. So it looks like my wife’ll be driving me again.
All this is well and good, but no one can seem to figure out WHY I am having this pain. My oncologist sent me to a spine doc and he told me he didn’t think the pain was from the spine (he said it seemed more typical of cancer-related pain that is at a constant level, rather than spine related pain which typically changes over the course of a day). I go back for another abdomen and pelvis (or abdomen and chest) MRI at the beginning of November to see what, if anything, has changed.
Meanwhile, not to appear like a slackard (after helping to take care of the karate school since Mr. Quinn passed away a couple of months ago, or my work with scouts, I have also taken up the cause to get the two counties that boarder where I live (Gwinnett and Dekalb) as well as the town in which I live (Lilburn) to pass a proclamation announcing that November is pancreatic cancer awareness month. We’ll see what happens. I am thinking about doing so for Atlanta, too.
So there you have it; the last couple of 6 weeks in a nutshell. I will say that one benefit of not having much of an appetite is that I have lost about 15 lbs in the last several weeks. It so much better when the weight is coming off.
More later.
Merle