I’m Not Dead Yet (I.N.D.Y.)

So I had my latest trip to the hospital on Tuesday; Dr. Kauh was sending me to make sure I got some fluids into me to avoid my getting dehydrated.   In general, I am feeling better and better every day.  The nausea I had been experiencing has reduced quite a bit (of course, the reduction in nausea might have to do with all the anti-nausea meds I am taking: I have a scopolamine patch, I take Zofran, Reglan, and Ativan; all of which help with nausea).

The surreal aspect of all this is my weight.  For the 3rd week in a row, my weight was around 175lbs.  I haven’t been 175 since middle school.  On Tuesday, I had to fill out some paperwork for my MRI scan and it just felt weird writing that my weight was 175.

In addition to the overall weirdness of acknowledging being a weight I haven’t been at for over 30+ years, I am also struggling with the lack of overall strength deficits I am experiencing.  People likely don’t notice how thin I really am, because of all the layers of clothing I wear.  But, at night, when I get out of the shower and look at myself in the mirror, I notice how small my arms and legs have become and the extent to which I have bones around my shoulder and neck are so well defined in the mirror.

I have to say that I am really enjoying the chemo holiday I have been taking and, truth be told, I am loathe to go back onto chemo this week.  My quality of life has improved tremendously over the past 30 days and I just cannot bring myself to want to go back to a situation in which I am vomiting 2-3 times a day.  I would rather not take chemo (and deal with the potential consequences not doing so might have on my survival) than begin taking chemo again and being miserably sick during that time.

I am refraining from making any final decisions until  I meet with the doc on Tuesday to go over my latest labs and the scans from last week.

At any rate, that’s what’s happening on my end.  As always, I appreciate all the support I have received through this blog and in “real” life.  I cannot tell you how much I appreciate those people who come up to me and ask how I am doing today.

More later!

Merle

Tags: Cancer News, Main, Treatment | 1 Comment »

Just a quick note to let you know that things progress for me.  I am still experiencing nausea and got sick a couple of times this week.  My doctor put me on another anti-nausea medication (scopolamine).  More and more, I am leaning toward not continuing chemo.  As bad as I have been feeling, I felt worse on chemo and I do not thinking it makes sense to go through that discomfort.

Right now, I’m scheduled to receive simple IV fluids the next 2 Tuesdays.  On the 8th, in addition to getting my fluids, I will also get my next set of scans.  So we’ll have a better sense of how I’m doing at my doctor’s appointment on March 15.

On the upside, I have been enjoying having my Mother visiting with me since Wednesday.   Also, my sister came down yesterday.  Between them and all of the support at work, church (we have 2 churches making us meals each week), and the karate school, I feel very loved.

Merle

Tags: Cancer News, Main, The Martial Arts, Treatment | 10 Comments »

I had my appointment today and Dr. Kauh and I decided that instead of completely stopping chemo, I am going to take a 1-month holiday from it.  Hopefully, that will be enough to let me get back some of the zip in my step.  Meanwhile, my weight continues to drop.  I was 174 today, down from 179 last week.  One of the biggest surprises was the level of my bio marker.  The CA19-9 marker is an indication of active pancreatic cancer.  When I was first diagnosed, my CA19-9 never really got over 50 (upper level of normal is 37).  Unfortunately, my level last week was 320, well above normal.

So I am not completely giving up on treatment, but I’m taking (hopefully) a sufficient holiday to start to feel better.  We’ll see how I’m feeling in mid-March.

Merle

Tags: Cancer News, Main, Treatment | 10 Comments »

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.

Merle

Tags: Main, Theology/Philosophy, Treatment | 7 Comments »

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.

Merle

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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

Tags: Cancer News, Main, Treatment | 3 Comments »

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

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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

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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

Tags: Main, Merle, Theology/Philosophy | 4 Comments »

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

Tags: Cancer News, Main, The Martial Arts, Theology/Philosophy, Treatment | 4 Comments »