Two Shots and No Beer

Today I had the second of four methotrexate injections I'm getting as part of the next piece of the maintenance chemotherapy regimen I'm on.  Along with the methotrexate I will have four asparaginase injections, which apparently involves a pretty painful shot in the old gluteus maximillion.  These two injections are supposed to go in tandem, one day after the other, over four weeks.  But after I got the first week's dose I had to take the next week off.  The side effects are pretty intense for maintenance level chemo.  Not as bad as the week in the hospital side effects, but pretty rough when I'm trying to focus on work and function in general.

Despite that I'm going to try to finish these shots up over the next three weeks.  After the first ones a couple of weeks ago I not only felt physically bad I was in a terrible mood.  I've noticed that chemo has a toxic affect on my personality as well as my body.  I get really grumpy and negative and sort of depressed.  I'd like to think there is a correlation between my mood and the toxicity of the drugs in my body.  And there probably is.  But there's probably also a component of just feeling down due to feeling physically bad, and not being able to do all the things I want to do, or would normally do.  It's a constant source of frustration.  All that adds up to me being salty.  I just needed a week off last week, so I talked to my doctor and he was willing to be flexible with me.

I have been avoiding alcohol while I get these higher doses of chemo, and I have to say the timing on that is terrible.  The one thing I want to do is relax, to relieve some of the stress of feeling bad.  Self-medication in moderation is an underrated thing in my opinion.  But my liver is simply too taxed to deal with booze right now.  When I was in the hospital I received some reduced doses of chemo due to lower than normal liver function (which of course is due to all of the chemo I've been getting this whole time).  And I've noticed that when I have a drink I really don't feel well the next day.  So I'm drinks-free, which I have to say always makes me feel like a less fun person.  Not to come across as a lush - I'm nothing of the sort - but the social aspect of having a beer with my friends is something I enjoy, and dearly miss at the moment.

We all have whatever challenges we're dealing with.  Some issue we can complain about or identify as being less than ideal.  And we also have the opportunity to look at things the other way.  To see the positive side of our situation, whatever that may be.  For me it's much more difficult to be in a positive frame of mind when I'm getting chemotherapy.  But when I have some time away from it, even if it's just a week off, like I had last week, I typically shift back to a more positive place.  I remember that there are much worse situations I could be in.  And I remember that I'm blessed to be in any type of situation at all.

It's tough to gear up for these bouts of treatment, so I do my best not to think about it most of the time.  I don't mind talking about it, but moment to moment I find I'm less stressed out if it's not hovering around in my mind.  Because when I get these shots and I feel like total crap for several days, it's hard to remember that things are going well, and that I'm really lucky to be here and to be making such good progress.  Everything takes on a darker hue and I get that old familiar feeling of helplessness and isolation.  It's a difficult thing to express to others.  It's easy to relate to the idea of it, but not as much to the reality of it.  My brain gets really fuzzy and I have a hard time thinking about anything in the clear way I'm used to.  And that brings on anxiety and depression.  Like I said, we all have our challenges, and that one stands pretty tall in front of me during those times.

It helps to write about it.  It's less of a burden on others, and on our interactions.  You can read what I'm going through, and understand it perhaps better than if I tried to explain it in person.  I can get it off my chest.  Sometimes it's pretty scary, or maybe just overwhelming.  It seems like a long road ahead.  It seems like such an awful thing to be doing.  And when I go to the clinic everyone there acts like it's the most normal thing in the world to pump chemicals into your body.  For them it is; they do it every day.  But it sure is weird to have this stuff injected into me and then to just say, 'See ya later', and go home.  And it's disconcerting at best that the whole thing is a guessing game based on research studies that have been done.  Knowing that everyone is different, every cancer is different, it is a pretty bizarre thing to consider.

Every day I think about other people who are going through this.  People I know, and friends and family of people I know.  I wish I could take it away for them.  I wish I could give them good health and let them live without this burden.  I want someone to do that for me too.  But it doesn't work that way.  We just have to face whatever comes our way.  Without necessarily understanding anything about why it happens.  We face it head on and we keep going, because anything else is a denial of the opportunity we have to live our lives as fully as possible.

All of this might sound a bit dark.  It is important for me to express that side of things.  It's definitely a part of my reality right now.  But it's also not the whole picture.  Things are going well.  I'm able to work, to spend time with my friends and family, to play outside.  I'm really fortunate.  And I'm well aware of that.  It's always amazing to hear from people who have followed along with this whole thing.  It really helps me to know that I'm in your thoughts.  I guess that's just one of the things we need in life, to know we're loved.  I wish sometimes that I was better at expressing it to others.  I do my best anyway, with that, and with all the rest too.  I know you do as well.

Love,
Chris

Another Round Down

I was pretty worried going into the latest round of chemo that I would have a rough time.  My previous experience was quite difficult and I was afraid I would go through something similar this time.  Well, I made it through the week in the hospital without too much trouble.  I felt really tired and a little bit nauseous, but nothing like what I had experienced before.  And the following week recovering at home went by really slowly but I didn't end up getting sick and having to return to the hospital.  I think the smoother ride this time around can be attributed to me being healthier overall going into it.  I had blood tests on the Monday, Thursday, and the next Monday after finishing the round of chemo.  And while my white blood counts got pretty low, they never hit zero, at least as far as I'm aware.  That's a big change from before, when my counts would be zero for an entire week.  So this time I escaped with no fever, and no return trip to the hospital.

The most significant side effect I experienced was the 'chemo brain'.  General fatigue can have a similar, but less significant effect on your brain functioning.  At least in terms of how it feels.  If I'm really tired I'll be less mentally sharp; we all know what that's like.  With chemotherapy it can feel like there's this fog that has descended on your ability to think.  I have a hard time remembering things or focusing.  I've gotten in the habit of doing crossword puzzles every day, and during the week following treatment I could hardly look at a puzzle.  But as time goes by my head is clearing up.  I still have headaches a lot, but at least I can focus again.

Towards the end of this past week my hair started falling out.  I awoke each morning to progressively more hair on my pillow, until Saturday morning when I decided it was time to buzz my head again.  So Denise cut all my hair off and I shaved off my beard, which had started falling out too.  And now I'm more or less bald again.  I have no idea how long it will take to come back, but I can take comfort in knowing that it eventually will.  I'd say the worst thing about losing my hair is that my head is cold. And the second worst thing is that I don't like how it looks as much as when I have hair.  So many things fall into that category when you have cancer:  It sucks, but it's a hell of a lot better than not being alive.

It was kind of cool to be back at the hospital this time, feeling relatively good.  It was getting to the point before that I dreaded being there because I felt so bad, and I was in less control of my comfort level there than I was at home.  But this time was much easier.  And it was really nice to see some of the people who had taken care of me previously.  I don't know the outcome of this whole thing, but it certainly looks good at this point, and so it was fun to be a cancer patient who seems to be getting better.  Certainly not all of them do.

I've thought a lot about the line between positive thinking and being realistic about my situation.  On the one hand I don't want to pretend that things are somehow different or better than they are.  But on the other hand I don't want to doubt my ability to get better; I want to believe in it, and I want that belief to come true.  It's one of the many psychological challenges of getting cancer.  We have enough fear and doubt about ourselves and our lives in general anyway without being worried about dying all the time!  But I really don't feel like I'm dying, or like I'm going to die any time soon; I really feel pretty good, except for the chemo side effects.  So I just have to go with that and let it provide some comfort.

I have some more chemotherapy coming up during this next month.  I'm going to receive weekly injections for four weeks starting May 14th.  This is the next part of the maintenance regimen I'm on.  I'm not really sure exactly how it will affect me, since I've never had this dosing before.  It won't be nearly as intense as what I've just gone through, supposedly, but it also lasts four weeks, so I'm not sure what the cumulative effect will be.  My doctor seems to think it will be just fine, but who knows what that means.  Each new thing is a complete unknown, which is another of the psychological challenges of dealing with cancer and cancer treatment.  I can't wait until all of this is over, but I've got a ways to go with the maintenance stuff.

For me the best coping mechanism has been to just go out and have fun.  To play outside and see my friends and do things that I enjoy so I'm not thinking about any of this stuff.  It's good to reflect on it from time to time.  But most of the time I don't want it on my mind at all.  It's just a lot easier to deal with that way.  The time will pass and the treatment will be over and I'll get to move on.  And that's what I'm the most excited for now.  Love to all of you
-cd