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: The Big Sleep

I have finished all but one round of WBR and the biggest warning that I got from the Doctor was that I would enter a state of fatigue that she compared with the hibernation of a bear.

I have no doubt that the timing of my short term disability leave from work is spot on. I am entering this hibernation period for sure. Although I have spikes of energy, those are followed by aggressive fatigue. The kind where you have to lay down RIGHT NOW whether that be on a bed, couch, floor, dicey back alley, bed of hot coals (name any other horizontal surface).

Here is a list of some weirder side-effects that I list here for anyone who may find them handy at some point:

1.  EARS.

My ear canals are so sore and itchy, it is driving me to madness. The radiation seems to have dried them out and they have become a major distraction. I do believe that malevolent forces could use ear-canal radiation for mind control. 

2. Warning – 2 = TMI point. For those male friends and relatives (or for any ladies who just don’t want to know), skip this point. Personal, feminine nastiness that you may not want to equate with me. I include it for the sake of transparency.

Oh, Ladies, it’s like Satan’s evil minions are trampling on the delicate flower of womanhood of this middle-aged cancer chick. They tell you that you may get mouth sores because the mouth is made of sensitive mucosal tissues. Well, my mouth is fine, but the mucosal tissue of my ‘nether region’ has been under attack. Yowza! I know it's not sex-related because, frankly, when chemo has taken the zip out of your ovaries and you've basically become a dried up, a-sexual person, you don't have much sex. Fortunately, my relationship with KB has always been more about a clicking of the minds instead of the booty. I think he's okay with it.

3. Excessive weepiness. Not depression, but tearing up about a lot of stuff, some of it mundane, daily stuff. It’s like my heart is now, not only on my sleeve, but pureed and spread all over my body. It’s a very vulnerable feeling and not one I’m comfortable with.

THANK YOUS

KB. Always KB. Pick ups, drop offs, all the laundry, cooking, cleaning, dog duties, paying bills, on his own while still teaching and grading and doing his academic work and trying to engage me in interesting conversation despite my insistence on talking about me and my cancer – a lot. 

JM. Friend extraordinaire. Covering any transportation to/from appointments when KB has faculty meetings at work. Good company plus the gift of Postum, a chicory beverage from the WWII era for which I have nostalgia.  Thanks, JohnnyCakes!

SM. Co-worker and selfless friend. Shenanigans (not her real name) has given me a ride to work throughout my WBR treatments. She lives in the city, so this means she has to drive west out of the city, pick me up, then drive back into the city (which is now completely under construction) to take me to work. All this and she was happy to be paid in craft beer. Sweet deal. Sweet girl.

CS. My boss. Understanding. Compassionate. I have no worries as far as my job goes. A good person.

Loyola University Chicago. My employer. Genuinely compassionate. So many well-wishes from people when they found out I was going on STD. Providing unbelievably good, reasonably priced health insurance that, because I have it, I have no medical debt at all, despite most of my treatments costing nearly 60K every three weeks.

All the good people out there sending care packages, good vibes and solid prayers on my behalf. I wouldn’t be here without you. May God’s peace and blessings surround you all.

And now, time for that nap.

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.

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.

Musical Theme for Whole Brain Radiation

Today it begins.

Reflections, Reconsiderations, and Eating Crow

Recently, I found out that I have 30 spots of cancer in my brain and that they are growing – slowly – but still growing.

My option?  Whole Brain Radiation. The queen bee of things I’ve been dreading and hoping that I would never be asked to consider. I used to believe that if it ever actually became a thing that I had to do, I would absolutely refuse and accept death.

Life is funny, the way it works to make you feel like a boob.

In the recent past, and in this blog even, I have spoken about people who take horrible treatments and who fight to the bitter end as if their decision was stupid. Well, I can say now that that came from a place that was puffed up, prideful,  terribly short-sighted and not at all compassionate.

The truth is that when my reality involves and “okay, you can go through potentially horrible treatment, OR you can die in fairly short order in a horrible way,” I choose the potentially horrible treatment that terrifies me. Not because I am brave, but because I am afraid. Going through treatment I believe, although billed as the nobler and braver choice, is truly the opposite. Saying no to treatment and facing death – that’s absolute bravery.

I hear this song in my head (totally unrelated to the tumors):

Cowardly, cowardly custard!
Can’t cut the mustard!

 

 

So now I eat my crow. I can’t not do it - the radiation. I’m not ready to die yet. So I understand now. Why people keep seeking treatment. They’re not ready, either.

At what point (if any), I will be ready, I don’t know.

In the meantime, WBR, here I come.