Friday, June 15, 2018

Climbing out of the abyss

I started my second cycle of chemo last Friday.  Regretfully, this round hit me harder than the first time through, and it's been a tough week.  Part of the problem was that I had concert tickets for this past Monday night, and on a night where I should have been resting, I was at SPAC in Saratoga, NY seeing Dead and Company.

Ever since then, I've been playing catch-up on my sleep, and struggling to get by at work.  But, day by day, things have been getting better.  Today is the first day I've even considered going to the gym in the past week, although I'm guessing I'm going to opt for rest instead.

I was due for another infusion today - the less toxic drug only.  But, somehow the hospital screwed up and didn't get the drug in stock, so they had to delay things until Monday.  That means I don't get the weekend to rest and recover right after the chemo.  But, because it's the less toxic drug, I'm hoping I'll feel pretty decent next week, even with the infusion on Monday rather than Friday.

I did talk to the hospital a few times this week.  I've honestly felt so bad that I barely made it to work a few days this week.  I was hoping there was something that could be done to alleviate the fatigue and nausea.  They couldn't really help for this round, but they have some ideas going forward.

Today, the hospital finally got back to me on those issues, and they want me to really focus on taking more of a steroid next round, plus more medical marijuana.  I've been nauseated, unable to eat, and not sleeping well despite being tired.  My doctor is convinced that the medical MJ will make a big difference if I can just get that down the next time around.  So, we have a plan for the next round.  This is the first time ever that my doctor has actively advised using marijuana.  She never flinches when it's time to sign for my medical MJ card, but she's never really advocated for its use either.  This time, she is actively suggesting that I use it more.  So, I will.

Hopefully, by not having chemo today, I'll feel better this weekend.  It's supposed to be a beautiful weekend, and I'm hoping my wife and I will get out and do some fishing.  Plus, we have our normal weekend trip to the farmers' market and some lawn work to do.

Other than that, life moves on.  I'm just trying to have as much fun as possible, take care of my body, and make sure I can handle the demands of work.  It's been a tough week, but I made it through.  Hopefully the next two weeks will be much better.

Here's a link to an interesting article that I read this week.  While the author has a completely different illness than I have, I really identified with the article.

Thursday, June 7, 2018

First chemo cycle done

Each of my four scheduled chemo cycles lasts 21 days.  Today is day number 21 of the first cycle, which means that I start the next cycle tomorrow.

Just as with all the other chemo I've done in the past, it seems that just as you start to feel almost human again, it's time to start all over again.

On Monday and Tuesday of this week, I had the best workouts I've had since the chemo started.  For the most part, my strength, while reduced, hasn't been too bad.  It's been my aerobic capacity that's taken a big hit.  I'm not anemic, but I just seem to have no aerobic capacity.  On Monday and Tuesday, I finally felt like I could push a bit.

On Monday night, I ate what I would consider my first truly normal dinner since the chemo started.  My appetite is finally returning.  Yesterday was my wife's birthday (last year, we had dinner at db Bistro Moderne in NYC on her birthday, so this year's local restaurant was a bit of a letdown), and I felt good enough to take her out for dinner to celebrate.  I even had a martini - my first alcoholic beverage since the chemo started.  But, again, I didn't eat very much and I was in bed by 9:15.  Not my best effort for my wife's birthday, but in her infinite patience for my medical situation, she said she was just happy to have the whole family together for dinner.

So, tonight I'll get in one more CrossFit workout before the next round begins.

And then tomorrow morning, it all starts again.  I am hopeful that everything goes better at the hospital this time.  Last time around, they seemed a bit confused by all of the drugs, any potential drug-drug interactions, my sensitivity to dexamethasone (I need to have it infused over an hour instead of the normal 10-15 minutes), etc.  I think that my cancer is so rare that the nurses had never even given one of the meds before.  It is a fairly new drug, only given to liposarcoma patients at a particular stage in the disease, and usually in conjunction with another particular drug.  They were very concerned about the possibility of allergic reactions with that drug, hence the need for the dexamethasone and also Benadryl.  All in all, I didn't get out of the infusion clinic until after 7:00 p.m. last time around.

Tomorrow, we are starting earlier and hoping to finish much earlier.  I'm sure that none of the nurses wanted to be in the clinic with me that late on a Friday last time around.  I'm sure they had better things to be doing on a Friday evening.

This weekend, I'm scheduled to fish in a fly fishing tournament.  I'm a bit skeptical that I'll feel up to it, but as long as I'm taking dexamethasone, which helps with my energy levels in the days after the infusion, I have a chance that I'll make it out.

I have to admit that I've been sleeping in most weekends, and if I'm going to fish the tournament, I would want to be on water close to 5:00 a.m. on Saturday morning.  So, we will see if I can do it or not.  I can always start (if I can get out of bed) and then bail if necessary.

I'm going to load up on Ensure and ice cream this weekend.  In the first chemo round, my weight dropped almost 10 pounds in the first week after the infusion, although it has stabilized in the last two weeks.  I always seem be carrying some extra pounds, but I really want to limit how much weight I lose.  I certainly don't want to be losing muscle mass, which I think is important for me to remain active through the treatments.

So, no exciting updates.  The first round was tough - tougher than I expected, to be honest.  Last time I had doxorubicin, each round got worse than the one before it.  I'm hoping that doesn't happen this time around.  I've been able to work every scheduled work day since treatment started.  I had one day where I was really exhausted, but I managed to make it to work.  I've already lost my hair, so that won't change this next time around.

One round down, and three to go.

Thanks to all of you who read this blog and send me words of encouragement.  It's very much appreciated.  When I started this blog about a decade ago, it was all about ultra-running and skiing.  i certainly never imagined that it would end up being a cancer blog.  But, I imagine that most cancer patients never really expected their diagnosis right up until the moment it happened.  None of us are immune.  Eventually, whether through a friend or a family member or even yourself, cancer will touch your life.  Let's all hope that science eventually finds a cure for the plethora of diseases that we collectively call cancer.  Nobody should have to go through the process of being poisoned right up to the limits of what the body can handle, or radiated so extensively that secondary cancers are spawned.

I sometimes think of the movie Star Trek IV: The Voyage Home.  The crew of the Enterprise finds itself in a Bay are hospital in the 1980s.  Dr. McCoy encounters a patient on dialysis.  His response is "What is this, the Dark Ages?"  He gives the woman a pill, and if I recall correctly, her body generates a new kidney.  The interns are shocked at what they find.

Yes, we are a long way from those kind of medical solutions.  But, in many ways, we are living in the Dark Ages, and I'd rather be a patient in an era where medicine guesses less and actually knows how to solve problems.  Who knows how many years/decades/centuries might pass before we reach that point?