Transplant Started...Finally!

So yesterday, the day before Thanksgiving, I finally went in for my transplant.  Not much exciting to report on the day's activities. Lots of baseline testing to be performed prior to starting the chemo but finally started that around 3 and it only ran for an hour. The biggest issue of the day was fighting with getting the PS3 connected to wireless. The first room we were in did not have any problems but then we moved to a bigger room when it was ready and frustration ensued.  If I cannot stream Netflix everyone on the floor is going to be miserable. This room is much nicer though. I'm calling it the "Sunrise Suite" as it has a nice view of the sunrise over NE Philly. Hardly the your typical Alaskan view but it sure beats the usual Philly hospital view of a brick wall.

They count the days of transplant a bit oddly in that the day of the transplant is referred to as Day 0. Probably because they just about kill you with the high dose chemo and then save you with the transplant. Some people refer to it as their second birthday. There are 6 days of chemo before the transplant day so I started on Day -6 and today is Day -5. Each day is only 1-2 hours of chemo but it is very high dose stuff. Still not sure what I can expect as side effects or when they'll start kicking in but I'm not looking forward to it.

Yesterdays drug, BCNU, was distilled with a grain-like alcohol so I thought I might catch a buzz off of it but it skipped the buzz completely and went straight to the headache hangover stage.  Boo! Luckily they shot me up with some Benadryl and that counteracted it pretty quickly. Today I'm getting an hour of Etoposode and Cytarabine each and I will get the same combo for each of the next 3 days. I haven't had Cytarabine before but I had Etoposide with the more recent ICE chemo regimens. It's the one that had me throwing up in the hospital despite all the anti-nausea meds and this time it's quadruple the dose. LOOK OUT!

Done With Radiation

Today I completed my 18th and final radiation session. Compared to chemo, radiation has been a cake-walk, the toughest part being the drive to-and-from treatment each day. The typical side effects of radiation are fatigue and burns at the treatment sites. I didn't suffer from any (more) fatigue and have minimal burns, although they will continue to develop over the next week or so. Oddly the burns are primarily on my left side even though I was treated on both sides with the same dosages.

It typically takes a couple of weeks after the end of radiation treatment for the full effects on the tumors to be realized.Unfortunately we'll never get to tell how "well" the radiation worked because a few weeks from now I'll be in the middle of the stem cell transplant process.

We're now finally ready to go to transplant and I'll be starting that on Weds, right before Thanksgiving. Not the ideal time to start but it gives me the best chance of getting out be Christmas. We'll be celebrating Thanksgiving this weekend instead.

The transplant will be 6 days of high-dose chemotherapy followed by the re-introduction of my stem cells that were harvested last month. Then it's just a matter of dealing with chemo side-effects (said to include diarrhea and substantial mouth/throat sores this time) and recovering.  There's no set time-frame for getting out of the hospital, but they estimate 2-3 weeks after the transplant is completed.  Hopefully that's before Christmas but it all depends on when my stem cells start reproducing on their own. Even once out, I'll be extremely limited until my blood counts (ie immune functions) get back up to an acceptable level.

The radiation machine. The patient lies on the table while the head of the machine rotates around to treat the appropriate areas.

...and the Other Shoe Drops

This is quite the emotional roller-coaster. We got the result of the PET scan Friday and while the tumors that had responded to the chemo are gone and the tumor(s) that were resistant is still there, there is yet another new spot of cancer that seems to be starting up, this time under the left armpit. This is getting to feel like f'in whack-a-mole. They say this doesn't affect the treatment plan/duration, just another spot to include in the radiation, but it sure as shit is frustrating.

In addition to getting the PET scan results, we also met with the radiation oncologist to discuss radiation treatment "options". Basically there aren't options, just one course of treatment and it's not the short one. 18 freaking days of radiation which consists of 2 hours of driving for 10 minutes of treatment. For 3.5 weeks. Awesome.  This pushes my transplant back until the week of Thanksgiving (more awesomeness) with the possibility that I'd be in there for Christmas too (nacho supreme awesome).

On a positive note, no more chemo for the next month and the radiation is touted as "relatively" side-effect free. Maybe I'll actually be able to get some visiting in.

Finally, Some Positive News

This week they harvested my stem cells. They set a target for number of cells they need to collect and then you go in for harvesting until they hit that target.  This can take anywhere from one (unusual) to four days so they schedule for four and hope that you're done sooner. The collection is done through my new catheter with a machine/process very similar to dialysis.

My Fancy New, Surgically-Implanted Flare

My target was 4 million and I hit 5.1 on day one so only one day of harvesting for me. It seems that my blood counts (along with my cancer..boo) recover fairly quickly from chemo.

Thursday is my next PET scan which will tell us how the cancer has responded to this final dose of ICE chemo and will help dictate the course of radiation treatment which we'll discuss on Friday. Hopefully we can move right into radiation on Monday but we still don't know what the recommended treatment is going to be or for how long.  The radiation treatment will be overseen by yet another doctor at yet another location, Doylestown, which is convenient to...nothing.  Hopefully it will only be a few days of highly focused treatment but we'll have to wait to see what they say.

After radiation, it's on to the dreaded transplant portion of the show. Still looking like either the 4th or 11th of November to kick that off.

Also, I got some sweet new shoes...

Update...Long Overdue

Sorry for not updating sooner, it's been a very busy/hectic couple of months. Rather than inundate you with the all the lovely details, I'll just bullet point it:

• For a host of reasons that I may go into in another post, in-patient chemotherapy was an absolute disaster at Penn and I've now transitioned to a new doctor and treatment facility at Temple. Penn = great reputation, poor execution. They're just too big.
• I completed the 2nd and 3rd cycles of ICE chemo therapy (one at Penn, one at Temple) with no major incidents
• We're now prepping for the stem-cell harvest which should take place next week
• The cancer has only partially responded to this latest chemotherapy so now we're going to have to integrate radiation into the treatment before the transplant
• Radiation should start the 28th and is out-patient with "minimal" (we'll see) side effects. We won't know what kind of radiation or for how long until next week's PET scan.
• Transplant will start either 11/4 or 11/11, depending on the radiation schedule
• The transplant will be done at Temple's Fox Chase Cancer Center location near Jenkintown and will take about a month to complete.

To my east coast friends, I'm sorry that I haven't gotten to see very many of you even though I've been back almost 2 months. Between all the pre-transplant testing and visits, transitioning between doctors/treatment centers in mid-stream, and concerns about my lowered immune system (especially around kids), it just hasn't been feasible. I'd like to say it will happen soon but I can't promise it. There might be some time in about 2 weeks when I'm recovered from this last chemo and starting radiation but the schedule is still so fluid. Once I complete transplant, I'm not supposed to leave the house for at least 2 months so it's not looking great for getting out to visit over the holidays either. It's been extremely frustrating being back here with such great weather and not being able to enjoy it or hang out with friends. That was supposed to be the silver lining to all this but that's been taken away too.

There have been questions about coming to visit me while I'm in the hospital for the transplant. While I appreciate the thought, at this time, I don't think I want to have any visitors while I'm going through that. I'm pretty miserable with just the "regular" chemo while I'm in there, never mind the high dose stuff I'll be getting during the transplant. That may change after a few weeks in there but for now, check with Julie if you're thinking about visiting. I figure I'll be more up for visitors when I'm at home recovering but stuck in lockdown for 2 months.

I probably won't have another update until we do the next PET scan and decide on the course of radiation treatment at the end of next week.

1st Cycle ICE chemo

Ugh, that wasn't much fun.  This new chemo is 3-days in a row of treatment and it's clear that it's going to be a bit rougher than last chemo. First day wasn't bad, 3 hours of just the "E" and then I got to go home.

The next 2 days though, not so much fun. Went into the hospital and 9AM on Tues and started chemo around 11AM which continued until 10PM on Weds. Tuesday wasn't too bad as it really wasn't hitting me yet, just the expected boredom of being confined to the hospital room all day. I was even able to get quite a bit of work done.

Weds was a different story. Had my first official chemo puke at about 4 in the morning and I was feeling like I usually felt 2 days after getting the ABVD chemo...DONE.  I didn't throw up anymore but felt sick all day and not very hungry. Mostly just slept.

Originally I had big plans of working Thurs and Fri but no way that was happening. I did a little work remotely today but still feel awful. Need to get in for at least a little bit tomorrow though.

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.