Radiation: Day 1

It’s amazing how one’s weight is so closely tied to one’s appetite.  I got my appetite back last week and I was able to put on 7lbs.  As a result, I was less dizzy.  I still have trouble focusing, though.  Often times, I find myself just staring out into space and I am still walking slowly.

Today was my first day of radiation therapy.  They are shooting high dose radiation straight into the tumor with the hopes of shrinking the tumor.  It turns out I need 3 treatments so I’m schedule for my 2nd and 3rd treatments for this Wednesday and Friday.  The treatment today left me fatigued and slightly nauseous, both of which are possible side effects.  Next time, I am going to take some anti-nausea meds before going to stem that off earlier.

Well, that’s about it.  Nothing earth shattering.  More later.

Merle

Friday Update

Hey there everyone.  I am pleased to announce that after almost 2 weeks, the nausea has subsided.  Now when I wake up and my stomach is upset it’s because I need to eat breakfast.  That is a HUGE relief.  The downside to things is that, I guess because I’ve lost so much weight, I am still very dizzy.  It’s worse at times, better at others, but sometimes  I just stand up and end up having to sit back down to avoid falling.  I’m moving very slowly, deliberately often with MaryBeth holding my arm by my side to make sure I don’t fall.

On the treatment side of things, I am scheduled for my first radiation treatment on Monday.  The idea being to blast only the tumor with high dose radiation.  According to the radiation oncologist, the most likely side effect will be fatigue (but nausea and vomiting may also occur).  One good thing about this is that my next chemo treatment has been pushed back another week.

That’s about it.  I’m looking forward to tomorrow as my brother and sister are coming down to visit.  It will be nice to see them.

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

Then and now

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.

Merle

Trepidation

Well, Atlanta seems to have survived the great snow of 2011.  The kids were out of school the whole week and many of us were home bound for much of that time.  Temps, today, are supposed to get way above freezing so I am expecting a lot of the snow to melt.

I’m in an odd space today.  Tuesday I start the whole chemo thing again and I am concerned that I may have a similar reaction as last time.  However, it’s been long enough since the last treatment that I can be a smidge optimistic that it might not be so bad this time.  I guess we’ll have to wait and see.

I was supposed to have the simulation of the radiation surgery this past Monday, but it was canceled because of the snow.   I now have to wait until 1/25 to do the simulation.  Among other things, the simulation will use CT scans to accurately place the tumor in my body, so perhaps I’ll learn more from that scan.

If you have a moment, send some positive energy my way on Tuesday, Round 2 for chemo.

Merle

Responding to Chemo

Hey everyone.  Just a quick note to let you know that I am suffering through my first round of the new chemo regimen.   If the number of adverse reactions is an indicator of how well the chemo is working, then my chemo is doing gang busters.  I’ve been vomiting most of the days this week; something that I haven’t experienced previously.  Anti-nausea medicine is sort of working, but not great.  I guess on the upside, I am keeping weight off, but I would really rather not puke quite so much.  I will be sure to discuss my reactions with Dr. Kauh to see if he has any suggestion.

Anyway, I just wanted to give you all an update.  Hopefully, I’ll have better news for the next update.

merle

Christmas in El Salvador

This holiday we were invited to go to El Salvador for my friend Luis’ daughter quinzenaro (think wedding size party to celebrate a fifteen year old’s birthday). It is a BIG deal in the Hispanic community. MaryBeth, the kids and my mom spent Christmas with Luis’ family and saw quite a bit of El Salvador: from beaches, to volcanoes, to sugar making, to a preschool holiday party, to street parties, to fireworks (EVERYWHERE), to a mall in San Salvador. It was a wonderful trip.

Then came the PARTY. My daughter and younger son were both in the court (think wedding party) of almost 2 dozen boys and girls. They had a ball. My daughter loved the beautiful “princess” dresses she got to wear, and my son danced with the kids all night. No language barrier could keep them from making friends and having fun. My older son played is DS much of the time, as usual, but also seemed to enjoy experiencing a different culture. Still we were all happy to come home to tap water you can drink and toilets where you can flush the tissue.

Here are a few pictures from the trip. Hope you enjoy them.

Who stand outs here?

I am alive

Just wanted to drop a quick note to let you all know that I am still alive and kicking.  The last week, or so, though, I have been dealing with some fairly serious lower abdominal pain (I’m taking my pain meds every 4-5 hours).  Not sure why the plexus block didn’t work to prevent THIS pain, but it’s been truly uncomfortable.

Otherwise, the family had a good holiday season.  We are all hopeful that 2011 is a better year than 2010 health wise.  Here’s hoping.

More later.

Merle