Home from Transplant, What Now?

I got out of the transplant unit Monday afternoon and returned to my parent's in NJ where I'll remain until I am cleared to go back to Alaska which will at least be until March 13th, 100 days from transplant.  From the day of transplant, it took my white blood cells 13 days to recover to the point that I could leave.  I was shooting for the record of 10 days but went over, mostly because the radiation burns were peaking right as my counts went to 0. The weight is still dropping (not sure why) and at this point I'm down about 20 lbs from when I went in. The last time I saw 163 was probably early in college.

In all, I think I fared pretty well as far as side effects experienced vs expected.  There was nausea but no vomiting, no explosive diarrhea, not a hint of a mouth sore or pain. Just a lot of fatigue. The most discomfort came from the lack of sleep due to people constantly checking on me and the constant itching/burning of my radiation burns when they were at their peak.

Now that I'm out, everyone has all sorts of "what now?" questions. I'll see if I can address them here:

Q: Are you cured?
A: Can't say at this point. They do another PET scan 100 days after the transplant (3/13) to make sure there is no evidence of cancer. If there isn't, I think I can go home. If there is...there won't be. Even if there isn't any cancer, they don't consider you "cured" until you've gone 5 years without a relapse, which is still a concern for me given the nature of the cancer I had.

Q: Are you allowed out?
A: At this point, no. I'm restricted from public places so I'm pretty much on lock-down at my parent's until my blood counts get up to a certain level which I need to find out from my doctor. The estimates for when these levels will be reached vary greatly depending on the person but we're thinking at least 30 days of "house arrest". Could be longer but hopefully not.

Q: Can you have visitors?
A: Yes, as long as no one in the household is sick and no young children. They may not be sick but they tend to be "carriers" from school/day care. E-mail, call, or text me if you're thinking about stopping by and we'll see what the schedule looks like. I'll be here for awhile though so no need to rush, especially since I'm not real "dynamic" right now.

Q: How do you feel?
A: Totally run down but making the best of it. I'm not sure if it's all the chemo I got, the low blood counts, or some combination therein but it's going to take me awhile to get back to my normal physical self. How long...again it varies greatly but I'm going to push to get back in shape as hard as allowable. I'm already making a point of walking at least a mile a day but after that, nap is required. I'm eating fine and sleeping a lot to make up for all the sleep deprivation while in the transplant unit.

Transplant Day +12: Third HLE of the Year

What's a "HLE" you ask? That would be a Hair Loss Event and today marks the third one of the year. Much like the last one, it pretty much all came out at once in a single day. It grew back pretty quickly the other two times and hopefully I haven't pushed my luck and it will come back one more time.

In all probability, I will get out of the hospital tomorrow. At that point it will have been 20 days in, so I'm really looking forward to escaping. REALLY.

Transplant Day +11: Hard Times and the Light at the End of the Tunnel

It's been 9 miserable days since the last update but things are starting to look up.

• Day +4: I officially went neutropenic which means my white blood cell count (WBC) was low enough that I did not have an immune system. This was expected and had to happen before things go start going back up. First neutropenic fever (not bad, 100.5) in the evening which meant I would be on IV antibiotics until I was no longer neutropenic.
• Day +5: WBC went to 0. Again, expected and was expected to remain there for several days. Got my first infusion of platelets which are needed for your blood to clot.
• Day +7: White blood cells made a token reappearance but still way neutropenic. Got my first infusion of hemoglobin so my blood could carry oxygen to my body. (Kinda important)
• Day +11 (Today): WBC count went up to 1.9 which is over the 1.5 neutropenic level. The doctor says I can go home Monday morning as long as my counts don't drop (not expected) , I don't get any more fevers (so far, so good), and I can drink and eat enough. Of those things, drinking enough will be the biggest challenge. I have been on continuous IV fluids for the past 2 weeks and haven't needed to drink much. Now drinking just makes me feel sick and bloated but I've got to power through it if I want to get out of here.

While the delivery of the chemo (6 months worth in 6 days) and the transplant procedure were actually not that bad, the past 10 days or so have been ROUGH. I've actually been very lucky as far as the rougher chemo side effects go. Nausea but no puking, no mouth sores, and no diarrhea which is apparently is nearly unheard of with this procedure. I did stop eating on days 4 through 6 and haven't eaten that much on the other days. Early on, I was in the most discomfort from the radiation burns and chemo rash which really started developing on my armpits and back. I was either itchy or burning at all times for several days and there was nothing that really could be done but wait for my WBC to come back up so it could start healing. That did start healing up this week but the chemo and lack of sleep have caught up with me despite my counts coming back up. I feel completely run down and miserable and unfortunately this expected to continue well after I get out of here. Recovery is going to be a challenge.

Once out, the goal is to stay out which means no diarrhea/puking, no fevers over 100.5, and no infections. I will have a weekly follow up where they will check my counts and other levels to make sure I'm recovering. From here, the next big milestone is 100 days post-transplant (3/13) where I will get a scan to make sure there is no cancer. So we'll be here through mid-March at the very least.

Thanks for all the well wishes and prayers. Go Eagles!

Update: I freakin' knew it! 15 minutes after posting this, I puked for the first time.

Transplant Day +2

IT is coming and it is going to be brutal. Rough stretch ahead....

Transplant Day 0: Completed at last

As I mentioned in yesterday's post, the transplant itself was pretty anti-climatic, taking about 30 minutes to complete. After a bunch of pre-meds, the doctor just injected my stem cells back into my port using very large syringes. Worst part was that the preservative used in the stem cells tastes like creamed corn and apparently the whole room reeks of it while I breath/sweat it out of my system. I can't smell it but Julie is wearing a mask to shelter herself instead of me.

Some pics from the procedure today:

Pre-transplant CrossFit

Getting into character

The cooler of life, stem cells within

Performing the transplant on el Luchador

Julie passed out from the creamed corn smell

A cupcake to celebrate my "new" birthday

Today's soundtrack...a bit lighter and a lot more celebratory.

The ultimate party band: Gogol Bordello. They're playing New York New Year's Eve but alas, I won't be able to go.

One of my favorite songs from a band you've most likely never heard of...Kyuss.

And High Hopes from Pink Floyd...for whatever reason, this one always gets me.

Transplant Day -1: Trapped!

Last day of chemo today and woke up PISSED! All morning people are in my room, just get OUT! A little more tired today but counts are still decent and feeling ok. Just need some damn privacy...and to get the F out. I know they're just trying to help but sometimes I just need to be left the hell alone. Without a doubt a cliche but this song just nails today's prevailing the mood:

Today's chemo was 2 sessions but both in the morning separated by an hour so. Done by lunch. This is the one that supposedly is going to "knock me down" a few days after the transplant. The call it the "melphalan blues" and supposedly it will include all the fun stuff: vomiting, diarrhea, mouth sores, and extreme fatigue. Not that I'm looking forward to it but at least that will feel like it's doing something. So far it's almost seemed like they've been giving me chemo placebo. Had another jailbreak in the afternoon when my mom came to visit and they are still none the wiser. Getting it while I can.

Tomorrow is the transplant which should happen around noon. The process is advertised as a lot more anticlimactic than it sounds. They basically just inject the stem cells back into my bloodstream via my port and supposedly they know what to do from their.  Then we're just waiting 10-14 days until they start regenerating on their own and my counts come up so I can get the hell out of here.

...and here's some more positive hardcore brought to you by Hatebreed. A little over-the-top jock-core I know, but it still has its time and place....like last month when I executed a perfect stage dive during a show in Reading in between chemo treatments. Can't stop the Monkee.

Transplant Day -2: Jailbreak!

Are you not entertained? Let me hear your voices in the comments. I'm going a bit crazy in here and it helps to know that people are following.

Yesterday (Sunday) was the last day of the comb-chemo (morning and night) and still not feeling to much in the why of physical effects. Mainly the psychological effects of being stuck in here like a trapped tiger (yes, that's worse than a monkee). Luckily it was a pretty nice day and "security" is lax around here so when Julie and I heard our friend Sean from AK was passing through on his way to Philly, we executed a jailbreak maneuver and hung out with him outside for a little bit before he continued on. Definitely against protocol but the weather was beautiful and my counts are still up.

Incognito/Ninja Monkee... and Sean

Today's soundtrack is brought to you by a band I've been following since 1995 and have seen countless times live, Clutch. Their early stuff still gets me pumped up which maybe isn't what I need right now but I feel like I need to maintain the aggressively positive attitude towards beating this at the expense of making myself a bit nuts.

Transplant Day -3: Monkee in a Cage

Almost done and not much different from yesterday. Still feeling pretty good except that I'm pacing the halls of the unit like a Monkee in a cage. I know the feeling-bad times are around right around the corner somewhere but right now...I just need to move and there's nowhere to go. I think this little diddy captures the mood pretty well.

Fellow residents of the unit, consider yourself warned. There's a Monkee in your midst and he's not happy about it. "I WANT OUT!"

Jailbreak tomorrow?

Transplant: Days -5 and -4

Not too much to report here. On days -5 thru -2 of the conditioning chemotherapy regimen, I get the same 2 drugs at the same time each day. Etoposide and Cytarabine for an hour each starting at around 9 and then another hour of Cytarabine again at 10PM.  Etoposide was part of the ICE regimen I was getting leading up to the transplant but this time I'm at 4x the dose. This is the drug that was making me puke in the hospital before but so far I've tolerated it much better this time. Weird.  Still came down with the chemo hiccups on the second day of treatment but we've found a drug that seems to help settle that down pretty well. Drugs on top of drugs...that's the story of my life now.

The goal of the conditioning regimen is to a) kill any remaining cancer that may be lurking and b) suppress my bone marrow, ie kill my immune system. This second "goal" is monitored by daily counts of my white blood cells, hemoglobin, and platelets. Left alone with this chemotherapy, they would go to 0 which would mean I'd be dead because, at the very least, if there's no hemoglobin, there's no oxygen in your bloodstream. That means that at a certain point, close to 0 (?) they have to start giving me transfusions of blood while I'm still getting the chemo. This ensures that I remain "viable" while waiting for the conditioning regimen to finish up and the transplant to be performed. Am I worried about this process...oddly no. I continue to feel disconnected from the potential risks associated with it. Maybe as the chemo continues and my condition starts to deteriorate as an expected part of the process, it will start to sink in a bit more.  Right now though, not nearly as scary or adrenaline pumping as getting charged by a brown bear.

One of the things they tell you will help you deal better and get out faster is to try to remain as active as possible. I've made it a point to walk at least a mile each day while in here (26 laps = 1 mile) and I've even snuck out of the unit a few times to walk the stairs because walking in circles is BORING. It's only been 3 days and I can't wait to get the F out. I asked the doctor today what the record was for getting out of here post transplant. Provided there are no complications from my radiation burn, my goal is to at least equal that record.

Oh, also, I had another PET scan right before I came in for the transplant, and although they were telling me the effects of the radiation treatment would not be visible for a couple more weeks, they actually were. The nodes in my armpits are gone, ANNIHILATED by the radiation. That means that I can say I went into transplant cancer free, in remission, which means a lot to me because it offers a significantly better long term prognosis. Less chance of another relapse.

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.

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.

(Mostly) Good News!

Wow, has it really been a month since the last update?  Sorry about that.  Long story short, chemo has been taking a tougher toll on me and I haven't really felt like talking about it too much. Fatigue lasts longer and is more extreme and this heart arrhythmia has really been bothering me.  That's the bad news.

The great news is that I had my 2-month PET scan yesterday and the results are outstanding. The lymphoma is almost completely gone except for one little bit in a node in my neck which will probably be gone next week. That means only two more months of chemo instead of four. I am extremely thankful for this because even though this is considered a "mild" form of chemo, it still SUCKS.

It's still going to be a long two months but it's no four months. Looking forward to getting back in shape for the summer.

Hair has slowly been coming out the past couple of weeks but still hanging in there. No bald monkee pics to share yet.

Second ABVD Cycle

Not much fanfare here. Second chemo session went off without a hitch.  A tiny bit of nausea this time around, similar to that feeling that sticks with you a few hours after a serious spinning ride at an amusement park.  The fatigue has been less this time, probably because chemo was not immediately preceded by a flu shot this time around.  Sunday evening through Tuesday after chemo is still the worst time though.  Wednesday truly is hump day but I'm going to try to get back on the ice tonight. I didn't have any issues with hockey last week but that was almost 2 full weeks after the first chemo session.

I'll take the next chemo cycle over at Providence because they have a much nicer infusion center. I can get my own little cubby instead of sitting there staring at everyone else and comparing IV stand size.

No hair loss yet but this the week it's supposed to happen. Can't wait!

$15,000 Shot

That is not a typo. I got my first treatment-related insurance statement last night and...WOW! A single shot that took 30-seconds to administer: $15,000.  My annual deductible and nearly all of my out-of-pocket max taken out by a single shot....how is that even possible? Seriously, it must be made with bits of real panther. Let's just hope it works more than 60% of the time.

Even better, it's not even related to the main chemo treatment. It's the day-after shot that's designed to boost my immune system and help keep me from getting sick while I'm on chemo. I can't wait to see what a chemo session gets billed at. I can't imagine going through this without insurance. Can you say total financial ruin? Thankfully, I have a very "reasonable" annual out-of-pocket max which will kick in after just a single treatment session.  Funny how I used to stress over deductibles...cancer don't care 'bout no deductibles!

I Pooped 3X Today!

That's right...that which I have always taken for granted has become cause for a minor celebration. I think I have turned the corner on the chemo-coma that I slipped into on Sunday night.  Aside from the incessant hiccups, the day after chemo wasn't bad but I crashed pretty hard Sunday.  Work on Monday was a haze of lethargy and apathy and Tuesday wasn't much better as the energy went up slightly but "chemo cramps" were introduced.

Things seem much better today which is good as we leave for Arizona in the AM to do a bit of mountain biking. I really have no idea how that is going to work out but we've had it scheduled for a long time and I guess we'll see what I can make out of it.

On the Lighter Side

First night after of chemo was fairly uneventful. The only side effect so far has been some general fatigue which is to be expected, especially since I got a flu shot an hour before I started chemo, and a bit of a fever scare last night. I was having trouble sleeping and sweating in bed even though I ditched all the covers. I was getting a little nervous (fevers while on chemo are trouble) but it turned out the heat was just left turned up when we went to bed. False alarm.

Hey, I said "lighter side"...what gives?

Ok so the lighter side...an amusing anecdote from my Conoco on-boarding process. Post offer acceptance, there were a number of forms and procedures that needed to be completed and verified prior to becoming an official employee of Conoco Phillips. One of these checklist items was the drug-screening. No problem, pretty standard for any new job. Almost.

I showed up at the testing facility just before they closed because they're only open until 5 on weeknights, I was still working, and I only had to pee in a cup and be on my way, right?  WRONG! Turns out I was slated for the hair test which heretofore I had suspected was only an urban legend. Not so, my friend! As anyone who has seen me since I graduated from college knows, I keep my hair fairly short but for this particular test, they needed to get a 90-day history which requires hairs at least an inch long or a large volume shorter hairs.  The options I was given were to shave: most(?) of my head, one leg, or both armpits. I could only assume the tester was joking because what guy has hair that long these days?  Not many, surely there must be another solution here. Nope. So I had to go back into the testing room and this poor woman had to shave my armpits with electric clippers onto a sheet of paper from the printer and then "collect it" and jam it into foil collection packets. Those things are kid of spring/wiry and they ended up everywhere. Absurd! She kept apologizing (I'd find out why not too much later) but I felt like I was the one who should be apologizing. It seemed like she sure got the short end of the stick on that gig. 

Then I got home and for the next several days "enjoyed" that prickly, itching sensation as your hair oh-so-slowly grows back in and the extreme irritation that you experience when that is occurring in a high chafing zone. I gained a new respect for the effort that women who shave must maintain to avoid that uncomfortableness. You can't stop once you start...it stings!

ABVD Treatment 1 - Not so bad

....has been delayed from 9 until Noon today because apparently my oncologist's office is either unfamiliar with the concept of linear scheduling or it never occurred to them that "Chemo training" should occur prior to the application of chemo, not in the middle of it.  Stay tuned...
 So that's all you got?  That wasn't so baZZZzzzzzzzzz...........

Wuh-wha...Hey you kids! Get off my lawn!  Now where was I...oh yeah. Aside from the fact that I was the youngest person in the chemo treatement room (room of about 10 recliners, full house), it really wasn't that unpleasant.

Prior to beginning the treament session, I received my "chemo teaching" (odd verb masquerading as a noun) and got most of my questions answered. The training session was with the Weapons of Mass Cellular Destruction (WMCD) doctor and he confirmed the my oncologist was indeed being overly positive about the side effects I will be experiencing, as I suspected. These WMCDs will cause my hair to fall out, without a doubt, sometime between treatment 2 and 3.  The other side effects I am guaranteed to experience are fatigue which will peak 2 to 3 days after my treatment sessions (Sun-Tues) and a severly suppressed immune system, particularly 7-10 days after a treatment session.  For the coming week, that window falls right on our AZ mountain biking trip.  Outstanding!

Another unexpected nugget is that every Sat after a treatment session, I have to to the hospital to get another injection of neugypeugygeugy that will stimulate my bone marrow to produce more blood cells to reduce the immunosuppresive side effects of the chemo. Drugs to treat drugs to treat drugs. This puts a bit of a whole (that one's for you, Tim/Cindy) in my plan to get treatments on Fridays and have the rest of the weekend Scot(ch)-free.

Seriously Pissed

The worst part of this so far has been by far, dealing with all the insurance bullshit. It amazes me how these people will confirm a "fact" or tell you're they're going to do something, give you a reference number and then be either completely wrong or never do anything. Over and over and over yet again. And I haven't even started chemo yet. Awesome.

I think I've moved on from denial to the angry monkee stage. I can deal with the 4-6 months of minor to significant discomfort (depending on who you talk to). It's the possible complications down the road from all these toxic chemo drugs that has me pissed. I'm a pretty health guy: get a lot of exercise to stay in shape, cognizant of the perils of high fructose corn syrup and MSG (shut up Sean), no drug use and now....now, I have no choice but to have massive amounts of poison injected into me.  That pisses me off. I've got my doctor over here telling me "It won't be that bad. You won't be that tired, probably won't lose your hair"...  How do you know?  You want some chemo, my friend?  No on both counts. It affects everyone differently and the majority of the people DO lose there hair and DO feel completely wiped out.

I can't wait until tomorrow when I get to sit in a chair for 4 hours while they subject my cellular population to WMD. Until then, I guess I'll just have to get a hug from Julie and go play some hockey tonight. Maybe have a beer. /rant


...Oh and get a flu shot because when I asked about that, they told me "Absolutely!"  THEN WHY THE HELL DIDN'T YOU MENTION THAT WITHOUT ME SUGGESTING IT????????????
/rant2

Diagnosis and Treatment Plan

Finally, after nearly 2 months since starting the investigative process, we have a (nearly) final diagnosis as well as a treatment plan and schedule.

In reviewing the PET scan, it was determined that the lymphoma has not spread to any lymph nodes outside of the ones we'd already observed (neck and chest) or any organs.  This firmly cements me in Stage II and without any consistent "B" symptoms (large tumors, night sweats, nodal pain, weight loss) leads to a very positive prognosis. The only outlier is the bone marrow test results, which should come in later this week. Given that it has not spread anywhere else, we do not expect anything to turn up in the marrow.

Obviously we are much relieved and as happy as can be expected with the diagnosis: Total CRAP but at least not a baby diaper filled with indian food.

I will be starting chemo treatment on Friday which will consist of 4 to 6 cycles of ABVD chemo. Each chemo cycle treatment will consist two long 2-4 hour chemo sessions which have been conveniently scheduled to coincide with my off-Fridays at Conoco. It appears that Thursday night hockey has been spared. {yay!}

Side effects: This has been updated since the "chemo teaching". I will be losing my hair and I can be expected to experience significant fatigue, especially 2-3 days after the application of each chemo. Additionally, my immune system will be severely compromised, primarily during days 7-10 after application of each chemo.  There are host of additional side effects that may present themselves but we won't know those until the show up.
Beers on me this week because after Friday, drinking not so much. Doctor said I can still have a couple of beers a week but not really more than one a sitting. Certainly no Beer and Barleywine Festival for me this year.

Human Pincushion

You hear people use the term "human pincushion" all the time to the point that it seems overused but sorry, that's what I'm starting to feel like right now. The best part is, it's only just beginning.  Fun new year for me so far:

Weds: Got my chemo port surgically implanted. The port is so they can inject the chemo drugs directly into my jugular rather than tapping the veins in my are each time.  That's right...jugular.  The rational behind this is that the chemo drugs are very hard on the veins and if they go into the jugular, they get distributed much faster.  Or so I'm told.  Anyway, this port, about the size of 5 dimes stacked, was implanted in my chest, just below my collarbone. It has a flexible rubber tube running out the top (but still under the skin) that is somehow spliced into the jugular in my neck. So I've got this weird bump on my chest and the line is plainly visible under the skin. Franken-monkee. Julie wants to know what happens if the line somehow comes unanchored from the vein. I have no answer for this.

The procedure was quick and painless, I spent more time in pre/post op then in the operating room. In addition to the incision in my chest, they told me there'd be a "puncture" in my neck but the end result is a knot of skin bound up in a stitch or two.  Looks like a hack job, definitely bigger than advertised. The whole region itches like crazy and I can't take a shower for 3 days...awesome.

Thurs: A little pain, a little itching, full day of work.

Fri: Bone marrow biopsy! The last test they need to perform before treatment. This one involves sticking a large gauge "horse" needle in my ass and into the hip bone to withdraw some bone marrow and a bit of bone. Outstanding! This one was not as painful as advertised but was pretty humiliating. Due to new/visiting personnel, there was a lot of misscommunication in the prep for the coring of my butt that resulted in at least half of the oncologist's office walking in on my bare ass waving in the breeze. I was seriously concerned that they were going to have to stick me a couple of times and almost walked out. I think my favorite moment was when the nurse described the procedure and said "you'll pull your pants down a little and the doctor will just get in there and get after it". I lost it when she said that but she somehow failed to see the humor. They said I'd be pretty sore for a few days but I've had much worse from falling on my butt playing hockey...so far.