Near Death Experiences

My friend Ryan was visiting this weekend while passing through from the Philly area to North Dakota. It was a good visit; we pretty much just talked and stayed around the house all weekend.

One of the things that I'd forgotten was his motorcycle accident in the early 90's: talking to him on the phone doesn't show that his walk is still not what it was before the accident. But he also mentioned his near-death experience from that day a long time ago.

That brought to mind a blog post I'd made back in November 2007 on one of my prototype blogs elseweb. Much of that post was a show I had found online and posted. Here is a slightly trimmed version:

Near-Death Experiences

Also along the way I encountered the experience of Howard Storm. I found the following interesting regardless.

Build your own custom video playlist at embedr.com

[...]

As a footnote at least, I need to mention that I do not always fully take in the mountainous information that one can encounter as a result of searching the web. But I did feel the need to make special mention of a book that I had read decades ago with no original correlation to the development of my current debate. But encountering it 20ish years later within my searching is a coincidence I have no issue with sharing. Embraced by the Light is a good book to read for any reason.

I also found it interesting with that book. I had read it rather out of the blue (as far as I can remember) about 20 years ago. I had interest in it again back in 2007. And I certainly had a renewed interest in it of late. I had ordered it a couple months back and reread it over a weekend.

It's quite interesting to look back at the things I'd read and try to ascertain whether it was my initial read that influence some of my later views, or that my later views ended up matching a number of things that happened to be in the book.

More Bad News

Time came once again this week for my CT scan and a visit with Dr. Amatruda. The days since Monday's scan went a bit like last time -- I didn't really want to get advance notice of the results, but it makes for a stressful couple of days.

And there was not much relief for me in hearing the result, which was the the tumors on the liver continue to progress. Which means that the chemotherapy isn't working.

We discussed the temozolomide, but Dr. Tom presented a new therapy: chemoembolization, which is a kind of interventional radiology (I'm told).

It doesn't sound like a great deal of fun, requiring a hospital stay of 2-3 days. And this treatment would alternate sides of the liver being treated at one month intervals. So I believe it might go like left-right-left-right over a 4-months span, with the hospital stay each time.

Bummer.


Both Angie and I could admit rather readily after we were home this evening that our gut feel, each of us, was that the other chemo was not working. So it wasn't the hugest surprise or shock. It is just very disappointing.


During the day, mostly before the consultation, I had much better little stories to try to put together for this entry: much more colorful things to say (in my opinion). I was going to start this entry the other day after the CT scan, but I didn't.

There was me goofin' on the nurses about my veins that had bled somewhat excessively the previous two scans. Or telling them stories of my days with 3M Brookings where they made some of the tapes being used on me.

I could almost squeak it out now, but I've felt a bit deflated since the consultation.


Since it seems I haven't completely hidden this blog away, and several folks on Facebook tell me that they read it, I'll probably just drop this there. And get Heather in the tub. And save a bit of writing for another night.

Heather's Perspective

I was feeling less than peppy the Sunday after chemo, and Heather wanted to take pictures. I turned her loose with the camera. A few days later she asked to do so again.



Click for slideshow.

Long Time, No Update

Last week on Monday I had the chest/abdomen CT. With most of them until now, I was interested in seeing the results. They have a CD ready to go by the time I leave Suburban Imaging, and I remember wrestling with the pile of pictures to see anything I might recognize as something. But this time around I really wasn't looking forward to obtaining any knowledge from the scan results.

Ya see, up 'til now it's been about finding out the extent of what I have. But to me, this time was different. This one was the "after" of the two rounds of chemo. Hope for the best and be positive and all that, but eventually certain moments come along. And this was one: the scan results would essentially show whether I'm doing better or getting worse. I didn't care to roll the dice, but instead chose to face up when I went to talk to Dr. Amatruda on Thursday.

This worked for me to stay the course and have a normal Monday. But Angie seemed to be more anxious for the results, and on Tuesday I inadvertently used my gift of words not coming out of my mouth right -- so it took a bit of a discussion to get her to understand what I meant. And in the meantime I played a message from Dr. Amatruda's nurse Michelle that was received on Monday.

So by Wednesday and early Thursday the myriad mind games were playing with my head. For example, Was it a good thing that the nurse, rather than the doctor, was calling? Or were they calling because I needed to know something before my next appointment? It's not a very fun game.


Thursday dragged while I was waiting for my visit with Dr. Tom (which is now how I mentally say it instead of Dr. Amatruda); I let him know I was coming in cold. He has a demeanor that makes it really easy to talk about this stuff. He started by mentioning that it may have been a good thing that I kept myself in the dark -- Michelle was calling to let me know that the cancer was progressing, but that in the intervening time he reconsidered the earlier conclusion and he was not convinced of progression.

I've got some notes, so I'll try to sketch a few of the things we discussed. I believe I have 5 tumors (previously the little seeds). Most are about the same size, one faint area was bigger (9mm). We discussed ongoing treatment options, which included some usual suspects:

• Continuing the carboplatin + taxol for another round of 2 to be followed by another scan to see how that goes.
• Moving on to the IL-2. Dr. Tom explained how this, though it sounds wonderful and all by making chemo seem like a walk in the park, can actually be a gateway to clinical trials. And I'm led to believe that clinical trials -- generally speaking -- currently produce the best outcomes. [Geez. Now I'm talking the lingo.]
• Pills called temozolomide.

In general you're looking at our order of preference. Friday I was already scheduled for another push of the chemo, so we continued forth.


My chemo was scheduled for 8:30. Not being the morning person, this didn't go smoothly -- I woke up at 8:15. In the short span of about a minute, the following ran through my head: Angie didn't get a good sleep last night, Heather is still sleeping too and it'll take too long to get Heather ready, I've felt fine (driving-wise) after previous chemo sessions, I can always give her a call later, and more if you call now. I soloed. Needless to say, Ang was pissed with me.

I tried to take it easy, but maybe fixing the washing machine on Saturday wore me out more than I expected. Whatever the reason, I felt absolutely horrible yesterday. I flipped channels, napped, and felt like crap -- lather, rinse, repeat for 12 hours. We did catch up on some TiVo at least.

I went to work today, but still felt worn out and had the body aches. But at least they weren't as bad today as they were yesterday. I called Michelle and asked if this was normal. She let me know that this taxol coctail is apparently some pretty wicked juice; that as long as I wasn't running a fever what I was feeling was essentially par for the course.

Hoag Study Results

We got a call today from Christina with the Hoag Center, and unfortunately they were not able to develop a vaccine from the tumor sample we'd gotten from my liver. Fibroblasts(?) apparently made doing so initially difficult and eventually made it impossible.

There could be a possibility of trying to donate another tumor sample, but to do so I believe I understand that I would need to be off chemo for some time. And again, if I understand correctly, this is because the chemo is trying to kill the tumor, and the Hoag study is trying to grow it. So it might remain as a possibility, but for now we'll just ride through the chemo and I'll be hoping that it works as intended and systemically rids me of the cancer that I currently have. If I understand melanoma, though, even that may only be for a certain period of time. So I still have the same options as before (except I already have a hat).

I need to update my calendar with my appointments: I've got a CT, a visit with Dr. Amatruda, and more chemo scheduled for the second week of March. I expect to be discussing the Hoag study results (or lack thereof) with Dr. Amatruda in addition to the results of that scheduled CT. The CT will be an 'after' to compare with the 'before', which will tell us the effect (or lack thereof) that the chemo is having for me.

In the meantime, I have the 'fun' of trying to get my affairs in order. There's a lot of little things to try to write down and plan. I don't try to let it bring me down, though. I have generally remained in good spirits and plan to keep it that way.

Appointments, Discussions, and Hair

Angie accompanied me to my visit to Dr. Amatruda last week. She had a particular question in mind. The question didn't have a particularly great answer for her to hear, but she needed to ask it and have it answered. Essentially the question was, "How long?" Dr. Amatruda began explaining, and then gave me a bit of a look to ask if it was okay to be blunt. The short answer he gave was "nine months".

She was very shaken, and I've put off writing this for a while now. I suppose I've understood that answer, but it was really the first time I'd heard it in those terms myself. During the course of this thus far, I've learned how the numbers game works, and I choose to fight my natural-born pessimism and look at this in an optimistic light.

As it so happens, tonight I found the following in one of my search feeds:

Nine months? If the statistics for Stage IV malignant melanoma applied to every patient, I wouldn't be writing this post. I would be dead already as the statistics point out.

I followed the link and found the following chart, which better expresses the optimistic view I try to focus on:


The odds are what they are, but I don't see any zeros.

Having confronted the numbers in this dark way, Angie and I have had many difficult talks regarding a less-than-optimistic outcome for me. "Hope and pray for the best, but prepare for the worst", so to speak. It isn't the most enjoyable exercise, but it's not something that scares me at this point -- Angie is a different story. We'll keep at it; it would be good if I could put my procrastination off a bit though.

On Friday I had my second chemo. This one went much like the first, with me napping through most of it. The staff is friendly and fun, so it's not an unpleasant experience. Afterwards I wasn't as tired as the first time around, but maybe that's because I had some idea now of what to expect. Saturday I may have been a little bit too much "business as usual" because I was pretty worn out on Sunday.

Going back to a moment before Tuesday's appointment last week, my hair had begun falling out in clumps. It continued, and by the end of the week what was left was looking pretty ratty.

So I decided to go for a mohawk with the hair I had left. I think it turned out pretty nice -- Heather said she really likes it.

Maintaining the Status Quo

I suppose I should have posted some sort of an update a while ago, but [insert lame excuse here]. Here's how things have gone since my first chemo session.

Friday, Jan. 30th I was pretty much just taking it all in and being tired. Saturday I didn't know how I should be feeling either, so I was dragging quite leisurely. Sunday was the Super Bowl, and Angie and I enjoyed the game.

Monday I was headed to work, but I wasn't sure how that would go. By 3ish that day, I was feeling pretty worn out; I stayed until about 4:30. One of the reasons I left early was that in addition to being tired, darkness still arrived by 5:30 (I think). Since I have always gotten quite tired when driving at dusk, I figured it was in my best interest to duck out a bit early.

This first work week I was going to bed about 8 o'clock. There I'd flip channels and feel pretty worn out. I wouldn't be awake as late as "usual", probably falling asleep before 11. As the days wore on, things slowly returned to my normal. I was eating pretty much the same thing I'd had previously, and didn't have any nausea.

And so it has been. I've been doing good ol' dull and boring stuff like trying to prepare my taxes, framing and hanging pictures, and basically going about things pretty much how I had done before. I've been trying to figure out some Facebook stuff as well: picture uploading and what-not.

More or less, that is my lame excuse from above. There has been nothing really interesting to post about.

Update: Or, oops I forgot...

We did have a very nice Valentine's Day. I ordered take-out from the Texas Roadhouse. For the occasion I even cleaned up with a haircut and a shave (my hair hasn't fallen out yet, but a shave now lasts for days and days).

The food was excellent, and I shielded Angie from the feeling of being herded like cattle in the restaurant. We were both still full from those delicious steaks at least 6 hours later.