Author Archives: Brian

Hairloss Part IV

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I am beginning to think that I may not be pulling this look off anymore. It may be time for it all to go.

We went to a show this weekend, and at intermission Christine left our seats and went to grab some more popcorn. When she came back she was scanning the crowd looking for our me and our seats and she couldn’t find me. I was leaning forward in the seat hunched over and looking at my phone and she thought that a bald guy was sitting in what she thought were our seats. Turns out she was right, a bald guy was sitting our seats. Me =(

I figured I should take out the camera then and get a good look at myself… I was shocked at what I saw. Or rather what I didn’t see. The angles I can see in the mirror give me an illusion that I still have hair. These pictures do not. Using the flash doesn’t help anything either. Not what I thought I looked like at all.

I shouldn’t be so surprised. I knew it was going to happen, I just think that after it stopped falling out in clumps I kind of thought that maybe I was going to be spared. But it looks like that might not be the case. Oh well, it’s just hair. I should be glad for the extra time that I had with it. Most others on different treatment courses of chemotherapy aren’t as lucky.

We’ll see. I think we may try cutting the sides way back again but still leaving it a bit longer on top. Though I don’t how much longer we can keep this up.

I think the reason I AM suddenly having such a hard time with this is that I got used to the idea that I would still have hair. When I was initially diagnosed I figured I would lose my hair and that was that. I was okay it with it. It was part of being a cancer patient. I was even secretly excited to cut my hair when it started falling out. I looked at it as a right of passage for cancer patients. A “red pale bald badge of courage” as it were. BUT, then when it when it stopped, when it looked for a while like I wasn’t going to have to completely shave my head, I sort of got used to that idea.

These pictures though… sheesh. I’ve been operating under the assumption for the past few months that if you passed me on the street you wouldn’t look at me and think that I might be sick. But if you already knew that I had cancer, then yeah, you can see that my hair is pretty thin. Not anymore though. I don’t think I’m foolin’ anyone with this current look. We’re gonna need to do something about this.

Chemo today.
For the record: Do. Not. Want.

Also, in case you’ve been wondering: we did not win the Mega Millions.
Didn’t even get a single a number.

I may be winning the war against cancer…

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… but I’m starting to lose the battle against chemotherapy.

Every time I go in for chemo I am asked the following questions:

Are you having any pain?
Experiencing increased fatigue?
Any shortness of breath?
Coughing?
Numbness or tingling in your extremities?

I always get the feeling that they are looking for something, almost waiting expectantly for me to answer to yes to one of those of those questions. Expecting complications.

I finally had to answer “yes” when we last met with the oncologist on Wednesday. I actually reached out to my doctor regarding shortness of breath about 2 weeks ago. What I first started noticing was that my body was acting like it wasn’t getting enough air. Even if I was just sitting on the couch I’d find an increasing need to to yawn, or take a deep breath from time to time. I also noticed several instances where I would wake myself up in the middle of the night with the need to take a deep breath. My doctor didn’t seem concerned about it at the time, but told me to keep an eye on it.

Over the New Year weekend I started to notice an increase in the “shortness of breath” that I’m asked about every two weeks. I would notice it particularly when getting up and moving around after sitting for a long period of time. I started getting winded pretty easily and then when I would take a deep breath, the last bit of it felt as if I was smoking a cigarette. That’s kind of the only way I know how to describe it. I’ve never been a “smoker”, but I’ve smoked cigarettes in my life, at parties in college or whatnot. That feeling of breathing in smoke when you’re body is expecting air is a very distinct and odd feeling for a non-smoker and over the next couple of days I started to notice it more and more. The slight burning sensation in my lungs, and the feeling that no matter how big a breath I was taking, it didn’t seem to benefit me more than a regular or shallow breath. They felt the same. It’s as if that extra bit of lung capacity isn’t there.

Lung damage, though not common, is not totally unexpected with the treatment course of ABVD chemotherapy that I’m on. It’s the “B” that does it. Bleomycin can attack the lungs and in some cases cause permanent lung damage. It’s too early to speculate that any possible damage done my lungs (if that’s what is happening) at this point is permanent, but it does exist within the realm of possibilities. Again, we are dealing with some seriously potent drugs here.

I don’t think I ever mentioned it here, but before starting this treatment course I was given a lung function test both as a measure of health before starting chemo (to ensure my lungs were healthy enough given these known risk factors) and as a baseline for any possible complications. Later this week I’ll be going in to repeat this test now that I am beginning to show symptoms of possible lung damage. It’s a simple sit here, hold your breath, blow into the tube kind of test. The last time I took it, it was actually pretty tough since I still had a large tumor pressing back on my lungs, but after a few failed attempts to make it through the steps without coughing, I got through it.

As a precaution, I was taken off of the bleomycin for this cycle of treatment. Meaning that they only gave me 3 of 4 drugs that I normally receive every two weeks. After the results of this week’s test they’ll take a look at my lung function and decide if and when to put me back on it. In the mean time I’m just trying to breath normally =) Fortunately I haven’t felt the shortness of breath as acutely when just walking around like I did toward the beginning of last week, but I do still feel it when exert myself. On the plus side, if my lungs are being effected by the drugs I feel that we definitely caught it in the early stages.

I’ve talked about it again and again, but I still have problems wrapping my mind around just how sick the “treatment” for cancer can make one. So once again, if I haven’t made my official position on the subject known, then let me say: if you are ever given the choice between getting cancer and NOT getting cancer, I would advocate for “NOT getting cancer.” If it’s one thing you take away from being a reader of my blog, I hope it’s that!

Pictures

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I was lucky enough to get to go the football game with my father-in-law on Saturday. I hadn’t been to a Seahawks game in probably 20 years, and as it turned out I picked a good game to return on. Or rather, Don picked a good game to invite me to. Or rather, my brother-in-law Eric chose a good weekend to be out of town =)

It was an incredible game. Everyone knows the story by now, so I’ll just show you some of pictures that Don took while we were there:

I look at that last picture, and I’m struck by how puffy I look in my face. I’m not quite at my biggest anymore, but I’m still in the range of about 30 lbs up from my lowest point back before I started chemo in early October. The photos below were taken (by Tiffany) at our 10 year high school reunion. I was at around 130 lbs. I started chemo 4 days after these picture were taken.

I’d pretty much wasted away to nothing by the time those pictures were taken. They certainly stand in stark contrast the pics above.

I made a photobook for Christine for Christmas entitled “2010: Our best and worst year ever” When we go back and look at some of the pictures from this summer, it just seems so obvious in some of those pictures that I’m sick. It’s amazing that we didn’t see it at the time, but hindsight is 20-20.

That Familiar Feeling

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I’m sitting in the waiting room waiting to go in for my lung function test. It’s a pretty easy and benign test (I’ve done it before) but unfortunately my body seems to think that it’s here for chemo. And there is nothing that I can do to convince it otherwise.

I have the familiar taste in my mouth and the incessant knot in my stomach. I drove myself to this test so fortunately this feeling didn’t really start until I pulled into the garage. Otherwise had Christine come with me I probably would have started feeling sick as soon we got into the car and started to drive to Capitol Hill on a weekday afternoon. It’s happened to me before when we headed into downtown once. It was a weekend actually but there was something about the lighting, the time of day, and the traffic volume that told my body we were going in for chemo when in reality we weren’t.

The body’s response to these things is so interesting. Clearly it’s figured out the connection and that these treatments aren’t really “good” for me. And what’s fascinating is that it starts to react and protest at the slightest hint that we are going in. Normally if I was coming here for chemo I’d have taken some anti-anxiety medication to help combat it.

The medication is called lorazepam and it’s pretty powerful stuff. When I’m on it I’m lucid, and totally with it at any given point, but as we’ve discovered there is a good chance that I’m not going to remember much if anything afterward. It’s come up a few times for Christine and I when we’ve had to rehash a conversation that we’ve already had because we had it on a Wednesday night after I had chemo. Last night for example we were talking and I mentioned that we hadn’t started watching the new episodes of “The Biggest Loser” off the of DVR. Christine just stopped and stared at me. Apparently we watched it last week. On Wednesday. She tried to jog my memory for anything about the 2 hour program which I had apparently watched with great interest. I had nothing. After a few minutes I realized that I had vague memories, images really, of having watched it, but for the most part I can’t remember anything that happened on Wednesday from about 2pm on. Apparently I’m quite pleasant on the medication though. Engaged, talkative, and this week I even ate all of my vegetables with dinner.

It is a good drug, and I’m glad I have it to take as it makes going the hospital for chemo that much more bearable. But not today. This kind of took me by surprise, and there is nothing I can really do about it, but sit there and wait. On the plus side, like I said, it didn’t start until I pulled into the parking garage of the hospital. And then it intensified as soon as I got off the elevator and was hit by that hospital smell. It’s not that its a bad smell,  its just a distinct one that my body recognizes and has certain associations with.

Maybe it’s a good thing that I don’t always remember how it feels.

The Test

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The lung function test is pretty much everything you’d expect. If you’d expect breathing exercises into a tube.

You sit in the little box with the thing in your mouth and follow the instructions from the technician sitting at the adjacent computer.

Put this in your mouth

You start by taking a couple of normal breaths (which is one of those things that pretty much impossible to do if you are consciously thinking about your breath, like you do once you start a breathing test…). After a few moments the technician instructs you to take a big deep breath in, hold it for a second, and then “Blow, blow, blow!! Keep blowing! Keep blowing. Empty your lungs! I know it feels like there’s nothing left.. but keep going! Keep pushing! Keep going! Almost there!… AND BIG BREATH IN and HOLD IT! HOLD IT! … and let it go!” Then you can come off the machine and recover.

In my case recovery meant coughing, eyes watering, and a general burning sensation in my lungs.

I instantly recalled the last time I had taken the test (before starting treatment).  I remembered that was almost impossible for me to get through the sequence with out bailing out due to involuntary coughing. You see, I used to have a tumor the size of a large egg pressing back into my lungs! We kept having to do it over and over again because my body just wouldn’t let me get through test. I would take that BIG breath in and I’d try to suppress the tickle in my chest, but ultimately the cough would come out involuntarily. We needed three complete sequences and I’m not exaggerating, I think it took us something like 10 tries. And that whole part about “keep going, empty the lungs” is hard work. (If you want to try it home breath out quickly and then keep breathing out an pushing for about 10 seconds, it’s not a pleasant feeling) This week though, we got through it every time!

The results will be reviewed sometime this week by a pulmonologist who will share the result with oncologist who should theoretically reach out to me at some point and let me know. Then at some point the decision will be made whether or not to put the bleomycin back in the treatment course. Unofficially though, the technician looked at the results and comparing them to my previous baseline test indicated that there is a marked decline, but that doesn’t necessarily mean anything.

One thing is for sure, I don’t miss the bleomycin ONE BIT. This latest round of chemo has felt like a cakewalk compared to some of the recent treatments. I was back on my feet with minimal physical side effect by Monday, whereas the last couple of treatments it’s taken me until Wednesday (so a full week) before I felt capable again. The lack of bleo may not be why, but I’m certainly in no hurry to throw it back into the mix.