Here I sit...

Here I sit, all lonely hearted
in a chemo bed in which someone else farted.

Started 1st cycle of treatment yesterday. 4 hours of outpatient chemo which was fine but now 48 straigh hours in the hospital with continuous chemo administration. We'll see how that feels on Thurs/Fri.

Round 2 Schedule

[Sigh] Not that these were ever fun to write but it's certainly not getting any more enjoyable. Just gonna keep this one to the facts.

We me with the AK oncologist last week and found that he had been able to talk with doctor we had selected at University of Penn...without ever meeting or seeing the facilities. Based on the biopsy results, still just Hodgkins but obviously an aggressive form. They were in agreement on the proscribed treatment and the fact that it needs to be started soon since it came back so fast. The working theory is that the ABVD chemo killed most of the cancer but there was some that was resistant to the ABVD and now that has come back strong, meaning that ABVD isn't an option going forward because this is obviously going to be resistant to it.

This time, the treatment will consist of roughly 5 stages:

1. ICE chemo: Similar in side-effects to ABVD but perhaps a bit harsher. On the plus side, I only have to go three rounds and its every 3 weeks instead of every other.  Comes with a pretty big downside though in that instead of 5-6 hours in the chemo chair, I've got to be in a hospital bed for 3-days straight because it's a continuous feed. Awesome.  We will start this phase on 8/12 in Alaska.
2. Stem Cell harvesting: Somehow the chemo causes the stem cells to leave the bone marrow and go into the blood stream at which point they are harvested and stored to later be transplanted back into me. This should kick off in early October.
3. Super chemo: Not completely sure what this is except that it's an extremely high dose of chemo that kills everything, including what remains of my stem cells. 2-3 weeks after harvesting?
4. Stem Cell transplant: I assume this occurs soon after the super chemo, quite necessarily
5. Recovery: This is the longest stage. I think I'm in the hospital full-time for stages 2-4 and at least part of 5. I can't leave the hospital until my transplanted stem cells "graft" which means they start reproducing on their own. The time required for that can't be predicted with any accuracy, anywhere from a couple of weeks to...?  Then there's a lot of time at home building everything back up.

Wow. Writing it all out like that wasn't depressing at all. Even though we had already decided to head back east for treatment, it turns out that I couldn't have completed the treatment up here even if I wanted to because they don't do stem cell transplants here. My second round of chemo will be due around 9/3 (after Labor Day) so I'll be flying back east about a week before, depending on when I can set my first appointment with this new doctor. Niko (and now Migsy) are coming with us and Julie needs to bring her bike so she's planning on driving the pets and gear all the way back to PA. She'll be leaving a little ahead of me.

My brother and sister are coming up to visit later this week so pretty excited about that. Other than that, we'll just be making the most of what's left of this awesome summer weather we've been having up here (no sarcasm this time) before we head back. I'll get a firmer schedule when I meet with the PA doctor but it sounds like best case scenario, I'm not sniffing Alaska again before February. At least I'll get to watch plenty of Flyers and Eagles games.

They're Baaaack

About a week and half ago, I noticed some lumps on the left side of my neck in the exact same location as last time. I ignored them for a few days, knowing full well what this meant but went to the oncologist when they hadn't disappeared after a few days. He was not optimistic but wanted me to get another PET scan before allowing that the Hodgkins was back. Had the PET scan last Weds, results back on Thursday and it was confirmed. The cancer is back in the lymph nodes on the left side of my neck and my chest. I feel great otherwise, I just got this shit that insists on growing in me. I'm pretty pissed about this, it's really starting cramp my style.

There's no really telling for sure why this has come back so quickly but while rare, it is not unheard of.  The going theory is that the first chemo killed all but a little bit of the cancer with the stuff that was not killed being chemo resistant.  That would mean what's left is resistant to the type of chemo I've already done. Another possibility is that the initial pathology performed as part of the lymph node biopsy missed something and that my cancer was Hodgkins mixed with some other kind of lymphoma cancer. My oncologist didn't seem to think that was likely but he also "thought" I was cured.

The treatment plan this time around is still up in the air because I will NOT be getting treatment in Alaska (couldn't even if I wanted) and I need to find a center/doctor in the Philly area. We're working on that selection process now but not sure when treatment will actually start. No later then our already scheduled trip back east in early Sept. Julie will be coming and staying too. It's not definite but it sounds like it's going to be another 2-3 months of a different kind of chemo followed by a high-dose of "super" chemo coupled with a stem cell transplant (another 3 months). Whatever it is, it ain't going to be fun. There may even be some bubble-boy action in there.

Here's a link on the stem cell transplant process: http://www.nbmtlink.org/documents/sg.pdf I haven't read it all yet. I'd be getting an autologous one, ie I am the donor as opposed to having someone else as the donor.

Things are obviously all messed up right now but we're trying to get a firm plan and sort it all out. I'm not much of a cheerleader so that's not the kind of support I need right now. Knowing that people are following this blog and the occasional comment are what helps most from the mental standpoint.

Signing Off

Today I had the port removed from my chest which was a minor procedure that only took about 40 minutes with (hopefully) minimal complications. Since my last chemo session at the end of April, I've been feeling pretty good, just a little out of shape. Still, it will take 2-3 more months to get all of that toxicity out of my system and I am on a pretty ridiculous regimen of vitamin supplements right now. I never did lose all my hair or even come close, it just thinned out quite a bit. I think it's slowly starting to come back now but my mustache is definitely filling back in, as are my eyebrows.

I think this marks a good point to shut this blog down so I won't be posting on here anymore but I know at our wedding people were requesting more photos of our good times up here so I've started a new blog at http://monkeesinalaska.blogspot.com/. I'll try to keep this new one more about the photos than the words since nobody wants to listen to my rambling, much less read it.

Before I go, thanks to everyone for the words of support and encouragement and I'll leave you with a few choice photos:

Getting my last round of chemo

My highly organized and efficient system for keeping track of medical bills

Taking it "easy" during our Kauai getaway

My lil friend, no longer in my chest

Completely Done...for the Most Part

Last week we got the results of my PET scan after the final planned chemo sessions and the verdict was...no evidence of any cancer!  So I'm officially done with chemo!

Contrary to what many believe, it's not quite as simple picking up where I left off though. I've been sitting around for the better part of 6 months, way below my normal activity level and I'm going to have all this toxic chemo in my system for awhile. Julie and I have been doing a pretty serious cleanse to help it along on it's way but it will probably still be a few weeks. Still, it felt really good NOT spending last Friday afternoon in the chemo chair. The doctor said I should get back to "90%" fairly quickly but it will take a few months to get back to peak condition. I feel like I'm at 90% already so I am going to push it for sure. Of course, I'm finding that the 90% doesn't last very long. My stamina is definitely lacking.

Aside from kicking the chemo out, I'm not officially cured (hence "for the most part") until I've been cancer free for 5 years. During that time, I will get a scan at 6 months and then once a year until we hit 5 years. Gotta keep Providence Imaging Center in business!

In other exciting news from last week, this happened:

We closed on a little "fishing" cabin just outside Talkeetna on Montana Creek. While I had all that down time during treatment, I did a bit of cabin hunting and went through the infinitely painful process of obtaining remote property financing.  It was worth it though. This weekend we went out there for the first time and just relaxed.  Friday we're heading to Kauai to celebrate being done with chemo and part of the honeymoon we still haven't quite had yet. All in all, a good couple of weeks.

8th and Final Treatment

I had my eighth and final chemo treatment yesterday and it came not a week too soon. As I've said before, I've had an easier time of this than most cancer patients given my age, fitness level, and "easy" treatment plan, but it's still been a challenge these past couple rounds. I am very glad I won't be having two more months of this.  Snow is finally (slowly) starting to melt up here and I'm ready to get on with my life and enjoy our brief summer.

I will have another PET scan in the upcoming week just to confirm that there is no cancer showing and then I can have my port taken out.  Oh how I will miss it. After that, there will be another scan at 6 months and then CAT scans at regular intervals. Five years without a relapse is the official criteria for officially being cured but everyone seems to think I'm good to go.

6 Down, 2 to Go

Sorry for the time in between posts, I've been tired/lazy lately.  The treatments are really starting to catch up with me from a fatigue standpoint but...THERE ARE ONLY 2 LEFT!!!! Pretty excited about that. The 6th treatment session was last Friday and it pretty much took me down for 5 straight days. While Julie was pushing the pedals around the White Mountain 100 course (She did Great!), I was just pushing the covers around the bed.

Still I'm thankful and can't help feeling a little guilty. At almost exactly the same time that I was diagnosed with Hodgkin's, my aunt was diagnosed with colon cancer. While I've been limited to just chemo as treatment, she has been subject to the full suite: chemo, radiation, and multiple surgeries. Compared to what I've been going through, she has had a much rougher time of it but the last news I heard was that her situation was greatly improved and had reached the same point as me as far as her PET scan: no more observable cancer cells, end of chemo in sight. Awesome news!

It got a little more "interesting" for me last week as my blood counts came back to low to treat the day before chemo. They gave me a shot to try to boost them before the next day's chemo and thankfully that worked. I mean, I wasn't too thankful because yeah, it "allowed" me to get chemo but I don't want to delay this crap anymore than I need to.

Physically it hasn't really affected me too much. I've lost about 10 pounds but that actually seems really low given all the beer I haven't been drinking. I've probably lost some muscle mass and put on some flab though because really I've just been sitting around reading when not working. Between the fatigue and then the heart arrhythmia that follows, it hasn't been real conducive to physical activity except for the few days leading into the next chemo session.

I've still got hair but as Julie says, "it's getting fuzzy". Really thinned out which I've been able to cover up by continuing to grow it long but it's starting to blow around in the wind.  If it does grow all the way back, I've had a good preview of how far I'd have to go before being bald and it seems I'm much farther off than I thought.

My eyebrows have thinned out and look kind of weird and I've also lost my armpit hair and the ability to grow a mustache.  The fact that the rest of my facial hair continues to grow at a normal pace inspired me to attempt the immortal "Chinstrap Beard". Classic example:

Unfortunately, being new to this style, I struggled a bit. This is tough to achieve!

The first attempt looked something like this. I left a little too much on there, although as seen in this image, it does have some distinctly simian characteristics:

The second attempt looked something like this:

While this was slightly better, it was still atrocious and Julie feared it. I also found that it requires a lot of effort to properly maintain a chinstrap. All further efforts were abandoned.