Tomorrow…
Just a quick update: the purple stride event tomorrow begins at 8a (I thought it was later). See you all tomorrow, though.
Merle
I’m Not Dead Yet (I.N.D.Y.)
I have Pancreas Cancer, but I’m not Dead Yet!
I have a great family…
As I think I have mentioned once or twice, next week is the Atlanta Purple Stride event in Atlanta. My brother and nieces are coming down to walk with me, but not all of my family is able to make the trek. This morning, my mother called me to tell me that she (and my sister and another niece) had just finished the Purple Stride event in Philadelphia. It makes me feel all warm and fuzzy to know that my family (even those who cannot join me in Atlanta) care enough to take the extra step (pun intended) to do their part to raise awareness of pancreatic cancer.
From the bottom of my heart; THANK YOU!
Regarding my health, I continue to do fairly well. The biggest issue I am dealing with is keeping my weight up (for those who’ve known me since before 2001, did you ever think THAT would be a problem for me??) and getting fatigued easily. Hey, if that’s the worst I have to deal with, I’m okay with that!!
BTW, if you are wondering if there is still time to donate to my fund raising efforts for next week’s walk, the answer is yes. Just go to: http://pancan.kintera.org/purplestrideatlanta10/merle to do so.
Have a great rest of the weekend.
Merle
Purple Stride 2010
And now for something completely different. In less than 2 weeks, Me, my family (including my brother and wonderful nieces), my friends (from scouting, church, karate and work) are going to join me to help raise awareness of pancreatic cancer. We all will walking in the Atlanta Purple Stride around Perimeter mall. Before we can get the legislature to start spending more money on Pancreatic Cancer research (currently, PC get just about 2% of the national cancers institute’s annual budget, even though it is one of the top 5-diseases associated with cancer related death and has the highest mortality rate than any of the other top 10 cancers). I know that’s a lot of numbers, but it’s all to say that we need people to be aware of the problem and donate funds to help solve it.
It was suggested by a dear friend today that I remind people how they can help. Of course, one way would be to make a donation to my fund raising efforts at: http://pancan.kintera.org/purplestrideatlanta10/merle
Better yet, though, come join us. Collect donations from your family and friends so that we can take a step closer to finding a cure (an effective treatment; a useful method of early detection). To do that, do your own fund raising once you have joined my team at: http://pancan.kintera.org/purplestrideatlanta10/indy.
I hope you have a great and safe Halloween (you know there was a time that eating the candy that the kids didn’t want was a joy — now, bleah! <sigh>).
Merle
Good News
Wow! I have to apologize. I posted the results of my latest scans on my Facebook account and did not even think to post them here. I guess, in a way, that’s a good thing: I was not as nervous this time around and so the need to share my results did not feel as pressing as usual.
The long and short of it is that my scans remain unchanged and my bloodwork is still fine. (I have mentioned that I like Dr. Kauh’s sense of humor. Well, it turns out his PA has a similar sense of humor. She suggested that Dr. Kauh come in to give us our results, since we had said in the past that we knew it would be bad news when HE came in for the checkup. In fact, Edie – his PA – came in and asked if we were freaked out when he came in. I was amused and could appreciate that kind of humor.)
My time at PanCan’s Advocacy Days was interesting. I heard survivor after survivor talk about being “cancer free,” yet, I never feel right using that language. As you know, Dr. Cameron (my surgeon) could not get all of the tumor, so there is a mass of cancer cells still in me. Since they have not been growing, we presume that they are dead, but who knows? Honestly, though, I think that even if there were no tumor left in me, I would still be hesitant about saying I’m “cancer free.”
We know that 70-80% of the people who have a successful surgery have a recurrence (usually within 2 years, but out to 5 years). So even when the surgeons believe they have gotten all of the tumor, somehow the cancer comes back. No one knows what will happen in my case (and worrying about it will not help).
I am pleased to say that I was pretty relaxed about this round of tests. As I have said here, I think a lot of that was just having a bunch of stuff going on. Regardless, no stress is a good thing.
The plan is to have another set of scans in September and, presuming they are also unchanged, I will be scheduled to have my port removed and I will skip to a longer follow-up period (either every 4 or 6 months; Dr. Kauh keeps changing his mind). All of this is good news. Things are good right now.
Cheers,
Merle
Quick (late) Update
Today I went through training for talking to congressional legislators. As part of advocacy days, we are going to ask our legislators to co-sponsor the Pancreatic Cancer Research and Education Act (which, among other things, mandates that the National Cancer Institute develop a strategic plan for addressing pancreatic cancer. As I have said here before, the statistics are startling:
In just sheer numbers, pancreatic cancer is the 10th most common cancer in the US. It is the 4th leading cause of cancer-related death, and it has the lowest survival rate (6%) of all the deadly cancers. We were shown graphs illustrating the amount of funding for a particular type of cancer and then the related survival rates; there is a direct, positive correlation between the amount of funding the government puts toward research on cancer and the associated survival rate (at least for the top 5 deadly cancers).
I have some understanding of what to expect and have been coached on how to counter arguments why a particular legislator cannot support the bill. For better or worse, I head to the Hill tomorrow and, I have to say, I’m excited. I really feel like being an advocate in this way may help make a difference.
On the flip side, I went through a whole host of unexpected emotions today. I met several people who are 5, 8, 10, 12 years survivors and I wondered, “What right do I have to be in this group — I’m only a 2-year survivor?” I realize this is completely irrational, but there was a time today where I really questioned if I could be useful at this event. I got over that by the end of the day, but I was very surprised at my response.
I’ll write more tomorrow (or Wednesday), but for the time being, here is a picture of the survivors at the training (there were about 480 people total at the training — the vast majority were there because they had lost someone to the disease).
Have a great evening (all 4 minutes left of it).
Merle
PurpleStride DC
Just a quick update, folks. Had a great time at the walk this morning. There were over 2,000 walkers and over 50 survivors. I wish I had thought to give my camera to someone while I was on stage…picture all these people wearing their purple shirts, and then, there I am in my “I’m Not Dead Yet!” shirt. It was a good thing I had a hat that said ‘Pancreatic Cancer Survivor’ on it — I think I would have otherwise gotten the crap beaten out of me. Most people liked the shirt, but I was definitely getting some nasty looks, too.
PanCan had a bunch of photographers there, so they are going to put a slideshow together of the pictures they took. When they do, I’ll pull out the pictures of me, but in the meantime here are couple:
Me with Jai Pausch and her sons
Me with Jai and her sons. When I met her at the walk this morning, she took one look at my shirt and said, “You must be Hamburger!” (I get that a lot.) There were lots of people there supporting Team Pausch, but Jai did take some time to chat with me a bit, in between keeping an eye on her sons.
Roger Magowitz and me
Roger and his wife (Jeanne) have been wonderfully supportive of me. Roger has put a lot of effort into raising funds and awareness about Pancreatic Cancer. I have mentioned them before: Roger is the man who puts together the celebrity golf tournament in Arizona to raise funds.
One last picture. Here is the pack I wore during the walk (I figured people would recognize me from the front because of my shirt; I wanted to give them something to look at from behind (…and get your minds out of the gutter).
That’s the TempurPedic bear, the Team Pausch flag and a button that says “Stupid Cancer.”
Thanks for checking in. I’ll have another update from Advocacy Days Monday and Tuesday.
Merle
Expectations…
Well, I’m in DC and laying in bed trying to figure out what I am expecting from tomorrow’s event. In fact, I am doing what I can to ensure that my expectations about tomorrow are not overly ambitious.
There is a part of me that would love if Jai and/or the Magowitz’s said they would like to spend the day together hanging out and explore DC. But the reality is likely that both groups will have other activities on their plate for which I have no role.
It’s going to be great to finally meet these people who have been SO supportive of me through my journey; on the other hand, though, I would be lying if I said I was not hoping that it would blossom into more than just a meet and greet.
So here I sit, trying to keep my expectations in check. I will make sure to take bunches of pictures and try to have them posted tomorrow night.
Thank you ALL for the love and support you ave shown me over the last several years. I would not be in Washington, DC if not for you all!
Cheers,
Merle
It Snuck Up On Me!
Who knew? Out of seemingly no where, today just snuck up on me. For those keeping tabs, I am writing you from the wonderful confines of the Winship Cancer Center at Emory University (and, yes, like a good Pavlovian dog, I still felt a little bit of nausea when I walked through the doors and smelled the antiseptic odor of the hospital). Today is lab day! Although it was always there in the back of my (and MaryBeth’s) mind, I have been busy enough that I really did not get terribly stressed about today. It’s not that I feel particularly optimistic (or pessimistic) about the likelihood that my cancer is back. I have just had other things occupying my attention.
Three weeks ago, the family and I went down to Sarasota for the unveiling of my father’s headstone (and celebrate my younger son’s birthday). The week after that, we were at home, but occupied by scout stuff over the weekend. This past weekend, the family and I took a mini-vacation to Valdosta, GA to visit Wild Adventures theme park. Next weekend, I’ll be in DC for the PanCan walk; the weekend after that there is another family event. Like I said, I have had a couple of things on my mind.
As I sit here waiting for my turn to have labs drawn, I look around the room and see many frail people, wearing masks, in obvious discomfort, looking dispirited. It’s at times like this that I realize just how lucky I am. I am not currently immuno-compromised. I do not need to wear a face mask. I am slowly developing my running endurance (though, I am not where I was last year). I am lucky. I am able to go to work and be productive. I am able to be more involved at the karate school. I have done more with my family, in the last couple of years, than I did in the 5 years before. I am lucky.
My mom will be visiting us in August around the date of TumorPalooza 2 (when is that? Oh yeah…AUGUST 14th!!), but she doesn’t want to purchase her tickets until I receive the results from today’s tests (because she doesn’t want to jinx me). Today, I was able to find a PRIMO parking spot in the world’s WORST parking garage; given the amount of difficulty I have had finding parking spaces in the past, I might think the ease with which I found one today was a bad omen (let me explain: In the past, I have had a difficult time finding a parking space and my scans have always been “unremarkable” ; today it was easy — does that mean my scans will be “remarkable”?)
As always, I do not know what my future holds. As my friend, Debra, has reminded me over and over again: the tests today will only tell me what is already there. If the cancer is back, I will deal. If the cancer has not returned, I will rejoice. Either way, I will continue living my life to the best of my ability!
Thank you, as always, for your love and support.
Cheers,
Merle
Perspective and Humility
The latter part of this week has been…enlightening. Many folks have told me that I am a “miracle man;” that I’ve “beaten the odds;” that I’m “special.” When this happens, 9 times out of ten I will discount the statement, either out of my tendency to self-deprecate or my insistence that my reaction to my diagnosis is how I think most (if not all) people would react in my circumstance. As I have documented here, I have had my fair share of low days, but for the most part, since my surgery (at least), I have been able to enjoy my life and feel generally healthy. I’ve been able to go on trips with my family, get back involved with scouts and karate, and have (hopefully) been somewhat productive at work. Things for me are GOOD!
This past Thursday, MaryBeth and I attended a pancreatic cancer support group and along with the regulars who have been coming as long as I have (the other Merle and Mike), there were some new faces as well. One of the new people was a woman who had a successful surgery in February and was fighting her way through post-surgical chemo (and not liking it very much). The other two, Linda and Tommy, were both diagnosed with Stage 4 pancreatic cancer. Linda has a mass on her pancreas that is inoperable, and also has a mass on her liver (which, luckily, IS responding to treatment and is shrinking). We talked a lot about the hope that perhaps not only will the mass on her liver go away with chemo, but perhaps the tumor on the pancreas will shrink so that she may be eligible for surgery. She is an older woman with a grown child and she is largely going through this process alone. I think all of us from the support group felt really good that we could provide her support in validating what she was feeling (that many of us have gone through the same emotional roller coaster she is going through) and to suggest resources for her to check (to get a 2nd opinion, to get help with discomfort, etc.).
The other person was a young many named Tommy. I think Tommy is younger than I am, he is married, and he has tumors on not only his pancreas, but his back, and in his leg. Tommy essentially had to self-diagnose the mass on his leg, since his old (he has since switched) oncologist discounted his leg pain. His doctors now are doing intensive radiation treatment to reduce the leg mass. The tumors in his back are impinging against some nerves, so he has shooting pain if he gets his back into a particular position (for example, lying on the hard radiation table). Tommy has been to MD Anderson and has an oncologist out there monitoring his treatment now.
In the end, however, both Linda and Tommy recognize that, unless things change, they are both fighting to improve and/or keep their quality of life. No one knows when they will die. Linda was told when she was examined to go home and get her affairs in order. Back in October, her doctors told Linda that she had 3-6 months to live. Hearing Linda and Tommy’s stories gave me a new perspective on my own situation. When I start to feel sorry for myself or bleak about my situation, I need to remember that I am doing stupendously well! I *AM* not dead yet; I’m not DONE yet.
Regarding my humility. As most of you know, I am trying to raise as much money as possible to support work being done to treat/cure pancreatic cancer and provide support to those who are affected by the disease. I have my own personal website set up so that my friends and supporters can help contribute in support of me or some other loved one that has been affected by this disease. I had set a goal to raise at least $2000.00 with my efforts. Well, the other day I received a text message from a friend indicating that he had just helped me reach my goal. Perhaps it was because I was slow and perhaps it’s because it was Friday, but I took his text to mean that he had just donated some amount of money to my efforts. Instead, he donated the balance of the funds left to get me to my goal.
His generosity simply highlights how humble I am to have such good friends who are willing to support me in my efforts. Have you ever seen Mr. Holland’s Opus? If not, you should. At the end of the movie, Mr. Holland is getting ready to leave his school for the last time (having “retired” and thinking he had not done anything useful with his life). He was ushered to the school auditorium and it was packed with a mass of people, there to celebrate him and his impact on their lives. He didn’t recognize until then, that he DID have an impact on a number of different people and that he mattered. I often wonder what my legacy will be whenever it is I pass (MaryBeth has made me promise that I cannot die until I’m 104). When I see the way people have supported me through the ups and downs of my battle; when I see how many people still are wearing their Hamburger Helpers bracelet; when I see that a relatively small number of people felt so moved to donate enough money to get me to my $2000 goal with 2 weeks left until the walk…I can honestly say that I feel loved, and cared for, and that, perhaps, I have done some good while I have been here.
I am humbled by your love and support and I am glad that I can call each of you my friend.
Regards,
Merle
Advocacy Days
I am beginning to really get excited about going to Washington DC to be a part of Advocacy Days. Yes participating in the Purple Stride event, and meeting Jai, is going to be really cool, but long time readers of this blog know that I have been jonesing to do “more.”
People have told me that my story has inspired them with challenges in their own lives and that has been incredibly humbling. But when I go to Washington, I am going to be meeting with Georgia legislators as a patient survivor, in the hopes of getting their support for Senate Bill 3320, the Pancreatic Cancer Research and Education Act. The Advocacy coordinator for Georgia has contacted me to say that she wants me there to speak with my senator, Saxby Chambliss, my representative, John Linder, as well as several other Georgia legislators to gain their support for pancreatic cancer research. (I did mention to her that to say that Chambliss and Linder were “my” political representatives is something of a stretch, since (a) we do not belong to the same political party, and (b) neither has expressed an interest in supporting pancreatic cancer research when I have contacted them in the past. Perhaps, as Alicia (the advocacy coordinator) told me, being there in person might make a difference.
I will be sure to take pictures of the whole weekend’s events and to post about my experiences. In the meantime, if you haven’t already, please consider donating to my efforts to raise money for the Pancreatic Cancer Action Network.