WBR: On the downhill

WBR mask - yes, that's me in there.

I have officially completed 14 of 20 rounds of whole brain radiation, and I thought another update was in order to inform folks who may need this treatment someday and want information, or for those who are generally interested.

Note: Many people undergoing WBR are given 10 or 15 rounds. I chose 20 in the hopes that it would minimize my side effects. It's been a bit of a slog, but so far, it has been worth it.

I felt pretty good as the week started. Monday and Tuesday went much as Monday and Tuesday of the previous week. I really didn’t feel the fatigue until I got home after a treatment around 5:00 pm.  I did decide to put my physical therapy on hiatus, thinking that I could do without the extra drain on my energy resources.

Wednesday, I started feeling the fatigue earlier in the day and by Thursday, it was quite difficult to function. I operated one-foot-in-front-of-the-other, especially when I was physically moving. Wednesday was also the day that I officially started losing my hair. While in the shower, I was washing my head and when I brought my hands down, they were covered with my ¼” hair stubble. Weirdly, although I expected this, it was still somewhat unsettling.

It was the fatigue on Thursday that helped me decide to apply for short -term disability starting with my last WBR treatment, April 28^th. I applied for the full amount to cover anything ‘unexpected’ with the cautiously optimistic hope that I may be able to come back sooner.

On the other hand, my oldest daughter has suggested to me that perhaps I should think about retiring. This idea intrigues me. As she put it, it’s not like I’m going to be actually retiring, so why not do it while I can. It would be nice to do some things the “I’ve always wanted to do”. Maybe travel to see family. I will be giving this some serious thought.
Thankfully, I had Friday off for the Good Friday holiday (thank you, Catholic institution where I work) and was able to mostly relax and take it easy.

I am a little concerned about being able to make it to work the entire week next week, but my boss is very compassionate and I think I’ll be able to work from home, should the need arise.

Some side effects that I’ve had from the WBR: dry mouth, painful & itchy scalp, but gladly, no burns, and an occasional dull headache. I have also pretty much lost my sense of taste. I now eat on a schedule to keep up my energy and to keep from losing a lot of weight. I really get no enjoyment from eating itself (MAJOR bummer), but I understand that this will pass after treatment. I didn’t realize how much I really enjoy food. Not being able to taste makes life pretty boring.
Other side effects, I think these come from the steroids that I’m taking to help against brain swelling, a little bit of sleeplessness, but not too much, I’ve been a little emotional. Not depressed, but a little weepy without being able to find a reason to be. Happily, steroids have given me a “sense of well-being”, which is actually quite helpful.

I have been able to keep my wits and sense of humor about me so I’m not a complete bore to those around me. I am requiring more help, mostly in the form of transportation at this point. It’s difficult to admit that you need help, and to rely on others to provide it. Although people are very kind and gracious and really want to help, I think we all like to think of ourselves as people who can provide help to others but not as a person who needs to receive help from others. It’s a strange switch in roles and one that I’m not really comfortable with.

In an effort to feel better about this, I try to think about the opportunities that my illness gives to others to do good things – to help, to offer themselves to service, to, in Jesuit lingo, to be “people for others”. Oddly, thinking about this helps and makes it easier to accept people’s kindnesses for which I am truly grateful.