Click on the link below to see a tribute to Merle’s life:
He led a good dash. http://www.merlehamburger.net/2008/11/counting-our-blessings
Click on the link below to see a tribute to Merle’s life:
He led a good dash. http://www.merlehamburger.net/2008/11/counting-our-blessings
Merle’s wish was that people gather to celebrate his life rather than sorrowfully mourn. A memorial will be held at the:
Unitarian Universalist Congregation of Gwinnett
12 Bethesda Church Rd
Lawrenceville, GA 30044
The memorial will be held on Monday July 25, 2011 in the afternoon. Mary Beth is finalizing arrangements with their minister. A specific time will be set and posted on this blog shortly
Memorial Roast Dress Code:
Scouts: uniform would be OK
Karate: uniform would be OK
All Others: Casual “Merle” style clothing is appropriate or Tuxedo with Birkenstock sandals and white socks
A block of rooms and group rate of $79 have been arranged for at:
Country Inn & Suites
1852 Rockbridge Road
Stone Mountain, GA 30087
Let them know you are with the “Hamburger” group
In Lieu of flowers please make donations in Merle’s name to PANCAN.ORG
(Pancreatic cancer claims 95% of all patients with-in five years)
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.
Last week, while I was in the hospital, I talked with a very good friend from high school about how I was dealing with current situation. Once I got over my brief crying spell, she asked whether I was afraid of the future / my cancer / etc. I am not sure I am afraid of what will happen to me, but more how my impending death will affect my loved ones. I’m sad that I will likely not see my children graduate from high school or get married or lots of other life milestones. I know that I am really getting tired of being sick all the time. I know that it is harder and harder to maintain a positive outlook. But I’m not sure I am afraid.
I think my fear will increase, I think, as I got to a time when the disease progresses further and my behavior is more and more restricted and, truth be told, I get closer and closer to dying. MaryBeth and I started having the hard discussions surrounding things like what I would like to have during my memorial services; how I want to have my death handled; etc. I think that the reality of my situation is solidifying.
My church is in the process of calling a new minister and Rev. Jan seems wonderful and I would be surprised if she is not called to serve. MaryBeth had a chat with her the other day and it turns out that our interim minister (Rev. Roy) works until the beginning of July and Rev. Jan would start around the beginning of August. Apparently, Jan has already spoken with other UU ministers in the area, recognizing that I may need the services of a minister this summer (hopefully not).
In the meantime, the family and I are still planning on vacations and trips to continue to develop family memories, trying to behave as normal as possible.
I still get nauseous, I continue to have aches and diarrhea, and the fatigue is still very present. I am beginning to have more and more aches and pains as the days go on, so the symptoms of the disease are becoming more prevalent. Who knows what the future holds. My tumor now is almost the size as the original tumor, but the one now is surrounding the base of the mesenteric artery making surgery impossible.
I am dealing with the edema I’ve been experiencing by wearing compression stockings. I have a new appreciation for what women go through when wearing tights or pantyhose. I still feel like I am retaining water, but that doesn’t seem to be a concern for my doc at the moment. I’ll see him again in a couple of weeks and we will re-assess where I am, how I am feeling, and what treatment options are still out there for me. In short, I keep plodding along. I’m not giving up. I’m in this fight to the end, it’s just that as death become more concrete and less abstract, my outlook on life has shifted.
I know for certain, however, I would not be able to face my future without friends like you all. Many folks wonder what they can do to help, but you know what, just being there, giving me a hug from time to time, and checking in on me (showing they care) is a wonderful help as I go through this adventure. As always, please continue to send your positive thoughts and energy.
Sorry for my incoherent ramblings. Thanks for reading. More later…
All through my earlier disease, I adopted a saying that showed me figuratively thumbing my nose at my pancreatic cancer. I have t-shirts that say it. I have rubber bracelets that say it. I’m not dead yet.
As I alluded to in the early stages of my disease, it was easy to flippant because and negative effects were down the road, far from being seen. Ever since the tumor has come back, I have been reluctant to use my motto; it just didn’t seem right; I didn’t feel comfortable saying it.
Let’s be honest, my treatments since September have been palliative — they have focused on trying to slow tumor growth while maintaining my quality of life. Well, we all know that the first back for chemo did just the opposite, so we are getting ready to try another regimen.
Funny thing is, I am starting to feel like I can say, “I’m Not Dead Yet.” again It is true, I am closer to dying now than I was last year. My tumor is almost as big as it was when I had the surgery, but today, right now, my spirits are high enough that the motto doesn’t seem so threatening. I wanted to share this revelation with those who have been supporting me for years. I’m in a good mood and I can truly say that I am not dead yet.
This week, MaryBeth and I had a therapy appointment at which I finally came to grips with the fact that right now, the treatments I’ve been undergoing are palliative. That means that the chemo and radiation are designed to slow the growth of the new tumor, not cure me. The problem is my quality of life has been in the toilet since I started the new chemo. Beyond the nausea and vomiting from the chemo, I am still experiencing nausea and vomiting from the radiation. (I have gotten sick everyday for the last several days). When I’m not getting sick, it seems I am always tired. Like I said, not much of a quality of life.
This week, I’m supposed to start another course of chemo, but I think we’re going to talk with Dr. Kauh about deciding when enough is enough. At what point do the side effects of the treatment for an illness are more noxioius than the underlying condition. I don’t know what the answer is going to be, but I’m at least asking the questions.
The side effects of radiation suck. Last time I had radiation therapy it was no problem – no side effects, nothing. This time, I have been terribly fatigued and nauseous (and yes, I even got to throw up today — Woo Hoo). Today I met with Dr. Kauh and we discussed the side effects I’ve been experiencing and we decided to put off chemo for another week. I am hoping that by the end of the week, I’ll be feeling more like myself.
My big goals now are things like getting out of the house and interacting with people. This past Sunday, the family and I went to a superbowl party. I mingled as I could, but mostly people came up to me and we would chat. Yesterday, I went to work; it was good to get back to the office. I spent all day there and when I got home and was exhausted. I should have left earlier in the day.
That’s about it for the news. More later.
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.
First, thank you all for the positive thoughts for yesterday. It was a full day at the hospital and I was nauseous for most of the time (Pavlov would be so proud)! I got through the infusion without incident and am now wearing my chemo pump until Thursday. The doc reduced the dosage of the Irinotecan chemo this time because of all the difficulty I had with it the first time around. We’ll see how well it goes this time.
Last night I was able to take the kids to karate which was great. Didn’t get a chance to see a whole lot of people, but the parents I saw were gracious with their concern and I had several good conversations. My best friend Luis was there for a while and we sat and talked a bit. I find that I get solace just being with Luis and that talking is not always necessary — maybe that’s because we are such good friends. I am thankful for having his friendship.
As to the title of this post, as I lay awake last night I realized that I was much more flippant about my condition earlier in my journey than I seem to be now. Part of that can be explained by my sudden disuse of my anti-depression medication. (It was nothing conscious, but when I stopped taking the Xeloda, I stopped taking the other meds I had been taking in the morning. I’ve fixed that – under threat of punishment from MB if I do it again.) But anti-depressants not withstanding, I think another explanation comes from the disease itself. It is easier to fight of an initial attack of pancreatic cacncer; it’s harder to do so when it comes back.
Earlier in my journey I said I was cautiously optimistic, but clearly I was more optimistic than anything else. It is easy to talk about dying when you’ve had no new evidence of cancer for years. The thought is more abstract as you continue to successfully battle the disease. When the cancer comes back, though, the thought of dying becomes more prevalent. I cannot help but think about my friend who died within 6 months of recovering from surgery. She went into the office for her first 2 month scan and they found new tumors (that was January). Unfortunately, she passed in June. Is that to be my fate? I don’t know, but it’s harder to discount this time around than it was last time.
Quick update from TGen: they apparently got samples of my initial tumor and genetic testing suggests that the chemo I am on right now (Irinotecan) shows the most promise for my specific tumor type (presuming that my new tumor is similar in makeup as my initial tumor. So I am on the right medication. It’s just the meds kicked my butt after the first dose. Let’s see how it does this time around (when the docs reduced the dosage to 75%).
As always thank you for your support, love, and caring. They mean the world to me.