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.

WBR: The Balding of Ruth

Since I will be losing my hair in about a week, I thought that, to save on messiness and appearing as if I had the mange, I would to some pre-emptive hair removal. Below are a series of pictures taken by my photo-savvy brother-in-law, to document the event.

P.S. It was a completely liberating experience. :)



Step 1: After chopping off a few inches

Self-shave

Sister Cathie helps - payback for years of sibling rivalry?

 

Mom supervising Cathie's handiwork. Her remark when I was done?
"That is oddly attractive."

 

Balding is complete.

 

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.

Musical Theme for Whole Brain Radiation

Today it begins.