Two weeks post WBR: Rockin' it Like Junior Soprano!

The other day, KB was watching The Sopranos and so I sat down to watch with him. A scene started that featured the Tony Soprano's uncle, Junior Soprano. I got up and went into the bathroom to look in the mirror and realized (with some dismay) that I look a lot like Junior Soprano (see photographic evidence below). If my eyebrows were bushier and my glasses a little darker, I'd be a dead ringer.

Junior Soprano

Me

WBR has not been kind to my physical self.

I am now bald, my skin is thin, dry and pasty. My leg muscles have been wasting due to lack of use and steroids (that are used to inhibit brain swelling). My face is puffy also because of the steroids.

Double vision is my biggest challenge. In an attempt to correct this, I have a special prism on the left lens of my glasses which at times, makes me look walleyed (see photo left) - not an attractive look for anyone, really, but it does make for some good character acting.

It is a mighty cancer treatment that can make a 48 year old, relatively fit woman look like 60-something Italian mobster.

I know that I am looking like I'm diminished. People are doing a lot of staring and talking to me like they do some elderly folks - using loud, clear speech, talking down to me a little bit. At this point, I don't have the energy to confront it, so I let it roll off.

Luckily, I don't see my value as a woman in my looks. I've always thought I was a little funny-looking, so I tried to develop a good intellect and sense of humor, with a bit of silly self-deprecation. It works for me.

And so I press on through the effects of WBR, interested, aghast, and ever so fatigued. But all of the effects are not bad. This treatment has forced me to slow down - really see things and really listen to people - to be aware of things as and when they happen. It's  nice to be able to do that instead of thinking about the next project or thing that I need to do. Life is good.



P.S. Please don't see this post as me looking for validation of my "beauty". I need no such thing. Just passing on my experiences with WBR to those interested.

WBR: Almost Half Way There

Like Dorothy, I've gathered my friends and am well on my way!

I have completed nine of twenty rounds of WBR so thought I would provide a (as it turns out) not-very-interesting update from the WBR front (love that battle metaphor!).

So far, I’ve experienced some weird headaches and nausea which have been successfully controlled through regular use of 6 daily mg or dexamethasone (also something of a mood elevator, which combats the woe-is-me-wowzy-wowzy-woo-woo mood you can get in going through tough treatments), and periodic use of dissolvable Zofran, an anti-nausea medication. Monday and Tuesday were pretty normal days, with fatigue gaining momentum on Wednesday through Friday.

Today is Saturday, and I’m fairly useless, but not entirely. The fatigue is both physical and mental, but I was still able to get up and get dressed. I have created a short to-do list for easy tasks (write thank-you notes, fold laundry, organize health-related receipts. – all things that can be done without much physical exertion. I do a task, then relax on the couch until I get a rise in energy. Do another task, then relax on the couch until the next energy wave…yadda, yadda, yadda.

I’ve had some dry mouth and dry eye issues easily taken care of with chewing gum and Biotene mouth rinse, and liquid tears eye drops.

The double-vision is another issue that the doctor thinks is unrelated to the WBR. I have a couple of appointments with other doctors to see if I have an inner-ear issue, as the double-vision started a few days before the radiation and, I guess, there are no tumors in the right area of the brain to account for it.

That’s sort of a weird thing. You deal so much with the cancer treatment that when something non-cancer related shows up, it’s a little surprising. Sinus troubles, ear infections, in-grown toenails, all continue and have to be dealt with whether you have cancer or not.

All in all, things are going fairly normally day-to-day. I have been told to anticipate increased fatigue so am trying to put things in order at work so that others can cover for me in my anticipated absence.

I am feeling good – peaceful - and extremely thankful for all of the people in my life who have stepped up to drive me to work, pick me up from treatments, send me cool and beautiful things to cover my pointy head, or just to offer words of encouragement.

Thanks an awful lot.

WBR: Pixilated blue and other weirdness

Last Tuesday, I started my 20-round regiment of whole brain radiation. It is, thus far, one of the weirdest treatments I've undergone.The side effect so far include:

Instability - a.k.a. walking around like a drunk person. Seriously, I feel like I've had a few beers followed by rowdy tequila shots. All the wooziness with none of the fun.

Weird headaches - These headaches are not constant headaches, but the sort you get when you have the flu or a sinus infection. Sometimes when I go from sitting to standing, or from lying on my back to my front, a wave of pain travels into my head, increasing in intensity, and then slowly subsides. One of these was so bad that I threw up afterwards and the radiation oncology intern made me go to the ER (brief stay, for CYA purposes, I'm almost sure).

Fatigue - a little in the evening when I get home from my treatments. Not too bad, yet.

The process itself is weird, too. You do see a blue light when you're being irradiated, in a circle, not solid color, but pixilated. And you do smell a sort of bleach-y smell (it could also be a burning smell, but don't like to think about that - ew.

The closest representation I could find
the for pixilated blue.

I am still "myself". I'm still able to handle problems at work and KB swears that having brain radiation has increased my sense of humor, which is nice because making him laugh is one of the joys I have in life.

I still have my hair, but will be shaving that off tomorrow to save on the messy natural fall-out (Get the radiation reference? Yuck, yuck).

I have a lot of support here and am thankful to all the friends, family and strangers who help to hold me up during those times when I just want to curl up into a fetal ball and let go. It has truly been a turn around for me. I used to think that  people were such jerky things, but you have all restored my faith in human goodness. Thank you, thank you, thank you.