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

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

Feeling Crappy

This has not been a banner week for me.  Monday I was suffering from a cold that has been lingering in my family.  Yesterday and today I have just been out of energy.  Maybe this is me dealing with the chemo, if it is it sucks (if it’s not it sucks, truth be told).  For the first part of the morning I needed someone to hold my arm as I walked because I would get dizzy.

I’m feeling less dizzy now, but am getting tired pretty quickly.  Not sure how long this is going to last.  I guess the good news is that I’m not having any abdominal pain.  ;-)

All happy thoughts and prayers appreciated.

me

Good News

After waiting in the pre-op room for almost 4 hours, I went back for my the cilliac plexus block to help with the pain in my abdomen and back.  I am ecstatic to say that the procedure seems to have worked and last night I slept pain free for a very long time.

Just thought you would like to know.

Merle

Dumb luck or providence?!?!

While I was in the hospital two weeks ago, I was visited by some doctors from the pain control team.  They talked to me about doing a pain block (ciliac plexus block), which would hopefully help my abdomen and back pain.  I had made a follow-up appointment with the doctor for Friday, but I was so uncomfortable over the weekend, that I put in a call to see if it were possible to move the appointment up sooner.

Well, it turns out that the OR had a window to squeeze me in and I’m having the procedure today.  It is outpatient, so I should be home tonight, but if it may help with my pain, I’m all for it (though, I did discover last night that if I took a lorazepam WITH my lortab, I sleep better).

We’ll see what happens, but I thought I’d share that nugget with you all.

Cheers,

Merle

Just the (circumstantial) facts please, Doctor

So I have taken the last couple of days to wrap my head around what Dr. Kauh, MaryBeth, and I spoke about on Tuesday.  Remember when (and you might not) the mass on my pancreas was first found and none of the docs wanted to call it pancreatic cancer; Essentially the idea was that it looks like a pancreatic tumor; it’s behaving like a pancreatic tumor; etc. that it MAY be pancreatic.  They couldn’t be sure until it had been biopsied to tell for sure.

Scoot forward to how crappy I have been feeling since August; the fact that I have lost more than 35lbs recently;  I have no appetite; the bio-marker for pancreatic cancer has been increasing fairly dramatically (if you’ll recall, for the 2 years after surgery, I had single digit biomarker.  Two tests ago, the biomarker jumped from 5 to 13 and at the last test, it went from 13 to 30); and there appears to be a “haze” at the base of the mesenteric artery.  Looking at the Gestalt of it all, it appears prudent to move forward as if my cancer is back.  Having said that, our children know that I have not been feeling well and that the doctor has put me on some new medication to help.  We have not addressed whether my cancer is back or not.

Dr. Kauh looked at some clinical trials before putting me on xeloda (a new chemo treatment — he discussed it as the oral version of 5FU.  I’ll be on a 2 weeks on / 1 week off.

In terms of doctor’s visits; I have one with a pain specialist on Friday, but I’m hoping to move that up earlier.  I have one with Dr. Kauh at the beginning of November; and I am trying to set up an appointment with Dr. Von Hoff (I got the number of his personal Secretary this weekend and I will be calling to find out exactly what records they will need from me.

More Later,

Merle

In terms of doctor’s appointments

Renewal of feelings

When I was first diagnosed with pancreas cancer, I admit I spent an inordinate amount of time wondering “what if” the tumor is inoperable or the surgery was unsuccessful?  What if I were to have metastases?    Given my current condition / situation, I have to admit that I have gone back to thinking about the what if’s.  In fact, the other day I broke down crying because I am not ready to die.  I have no reason to believe that my disease has progressed, but the recent changes in my behavior and symptoms, certainly give rise to the thought that something might have come back.

I know that we will all die at some point, but I am not ready to do so in the next 3-6 (or however long) months.  As always, I am sure I will feel better after meeting with Dr. Kauh to get the results of my testings.  I may also search out a 2nd opinion, too.

My friends Roger and Jeanne Magowitz have a good connection with Dr. Von Hoff, how is the primary doctor / scientist for TGen (an organization that has a very developed program of studying pancreatic cancer).  I may go visit with Dr. Von Hoff to get a 2nd opinion (or just another set of eyes on my scans) to make sure there is nothing being missed.   Who knows, what the future holds, but I’m doing my best.

Thank you to everyone who has pulled together to help keep my family fed during my time in the hospital (and afterward).  You all are the greatest.

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