Chi-Chi Ran, But The Bird Was Faster

I've known that I'd have to write this posting for some time, and I fear that I won't be faithful enough to the spirit of the writing.  That being said, here goes...

My wife, Ruth Anne Ashton, died on Friday, June 27.  She was 48 years-old.

I would like to add two things to this sad news.

Never underestimate the value of black humor.  Ruth and I enjoyed watching the television series Northern Exposure together because we found it intellectually stimulating.  The heading to this post is taken from one episode, "Blood Ties."  In it, a recurring character, The Jedster, visits the town of Cicely, accompanied by his hunting falcon, Taylor.  Taylor ends up hunting down a white poodle named Chi-chi.  After telling the town doctor, Joel Fleischman, about the dog's tragic death, Marilyn Whirlwind adds, "Chi-chi ran, but the bird was faster."  Ruth considered having this put on her grave marker.  Since she decided on something different ("Love is a Verb"), I thought it would be a fitting epitaph for the blog, as it reveals something about her intellect and sense of humor.

Life is fleeting.  Love is fixed.  The second season of Northern Exposure included an episode entitled, "All is Vanity."  Most will recognize the reference to the first chapter of Ecclesiastes.  (We had a passage from this book read when we were married in the Church a little over a year ago.  More black humor.)  During the episode's closing scene (see the link below) Maggie O'Connell reads Sonnet 116.  I include the link and the poem as Ruth loved this scene and I believe ours is "a marriage of true minds."

Let me not to the marriage of true minds
Admit impediments.  Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no; it is an ever-fixed mark,
That looks on tempests, and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rose lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
  If this be error and upon me proved,
  I never writ, nor no man ever loved.

I miss you deeply, Beloved.

Results: The Disappointment that Waits from Being Overly Optimistic

Last week, I had my post-radiation, post-scan doctor’s appointment to find out if radiation worked. I had also been experiencing some new symptoms in my spine and sacrum, so these were also being examined.

I was feeling, at least in regards to the brain radiation, pretty optimistic. I figured that the radiation would work with little trouble, as that has been the pattern for radiation and me.

Instead, we found that as fast as the radiation was working (killing tumors) it was also growing more (tumors) so much so, that the brain scan pretty much looked the same.

In addition, there is more tumor activity in the lungs (accompanied by a dry, loud, persistent cough which everyone kept tell me was “allergies”.  Apparently not. There are more, active tumors in my spine and sacrum, which have become excruciatingly painful. It has become very difficult to walk and sit in particular positions. If you’ve ever had bone pain, you know how ugly it is.

I was told the next step was chemotherapy (again) to which I said, “no”. I’m done with chemotherapy, which will hold off the inevitable for a mere three to four months while making me feel subhuman.

So, I signed up for home hospice yesterday. I met with a very nice Austrian lady named Esther who got me some very lovely meds that made my pain disappear and made me into a much more pleasant person.

It took me a day or two to come to terms with it – I was sad and confused and afraid and angry, and wondering how in the world this happened, and how did it happen so fast? I’m coming around, though, and hope to be able to spend good time with family and friends.

Until “D-day” I hope to keep up my blog. I’d like to document my dying days to help people (all of whom will die some day) have and idea of what goes through someone’s mind and body as it slows down and dies.

At this point, I’m happy and at peace with having made this decision. There’s something of a relief to it, not having to make any more big treatment decisions that could change my life in horrible ways.

I hope you that if any of you have this choice to make, that yours is made with such peace.

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.

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.

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.

Mood for the Day

A Picture is Worth 1000 Words

God and Coincidences…or are they?

In the past, I have been a doubter. Although I have deep faith in God and that he has infinite love for every person whether they believe in him or not, when something coincidental happens, I am more and more likely to take a second look at God’s hand in the matter. Some coincidences are TOO coincidental.

For example, last Monday morning before my scan, I was telling KB that I was feeling low (actually, he told ME I was feeling low after hearing me sighing over and over and seeing me sit on the (closed) toilet seat with my head in my hands for an unusually long period of time.). I told him that I was feeling very isolated and alone, and having a bit of a hard time coping at the moment. We both know that it comes with the cancer territory.

So I’m going through my morning in this pre-scan, depressed fog. I go to my appointment, go to the changing room and change out of my clothes and into my two dressing gowns (one open to the back the other open to the front). I grab my barium smoothies and head out into the waiting room area and I almost bypassed the one with three women talking animatedly, but decided to sit with them.

They were all talking about cancer. All three of them had cancer (or had had cancer). One had recurrent breast cancer and was now stage IV, one had a sort of muscle sarcoma that had recurred and was not stage IV, and one had had bone cancer but was there to support her friend who had the muscle sarcoma. Once I heard what their topic of conversation was I piped right in and started asking questions and contributing my experiences.

It was so spontaneous. Genuine. Raw and real.

I’m not sure if you tried, you could repeat the experience.

Anyway, we all had our scans and parted with kind words. When I left, I left my dark clouds behind, too. I felt deeply peaceful.

Now the doubter in me says, this was just a happy coincidence. My faith tells me that, just as we lose no hair without God being aware of it, God meant for me to be there, to feel the support, to know that I am neither alone nor isolated.

God’s keeping tabs on me.

And he’s keeping tabs on you, too.

God’s peace.

Blessings

I can say it no better. 

Shhhhhh....

listen.

The Gaping Maw of Death

My blog posts do not just to burst forth in a moment of thought or creativity. I start thinking about them, the topic, the content, the accompanying artwork, days or even weeks before I put pen to paper (so to speak).

A few days ago, I had just gone onto my blog to check for spelling, grammar, or other errors. As I re-read the post (which was about actual deaths) I started to think about my usual topics - death and cancer and having the knowledge that you’re going to die in relatively short order. 

Now everyone knows that they’re going to die eventually, but knowing that instead of those forty to fifty years you thought you had left to play with and in, you only have a few years, tops. And you don’t feel much like playing. So you are left, and I thought this was clever, staring into the “gaping maw of death.”

Now, I’ve been running around the Internet long enough to know that truly original ideas are very, VERY rare. As much as we all like to think that we are unique and special, people come up with the same thoughts and ideas all of the time. And sure enough, if you google, “gaping maw of death” and you will get 6300 results, which to me means that it is fairly common.

Many people with cancer and other progressive diseases are stood upright in front of death and made to truly stare into that gaping maw and consider the implications. What does it mean to be dead? Is it total annihilation of the self where we only ‘live on’ in the memories of others and the odd photo (or blog ;) left behind, or is there an actual piece of us, some energy (a soul) that leaves and goes elsewhere (heaven, hell, the eternal cosmos, absorbed into some great energy of the universe). Who has it right? Catholics? Protestants? Pentecostals? Jews? Muslims? Atheists? Mormons? Resuscitologists (see book by Sam Parnia), Scientologists (please no)?

That’s the hardest and most frightening part of death. We just don’t know and can’t know until we leap into that open, dark, slimy maw. And so we’re left with a choice. Which idea of death do we want to hang on to? Which one is the easiest for us to live with? I was raised a Christian and so that is the idea that is the most comfortable fit, although not the usual heaven as angels and harps and everyone dressed in white, yada, yada, yada. The idea of the afterlife as going home is very appealing to me.

We’ve all been away from home for periods of time long enough to feel a sort of relief upon returning to our own abode.

Letting go. Finally. Peace.

This is what I choose. This is what I hope for.

Though he slay me, yet will I trust in him: but I will maintain mine own ways before him. ~ Job 13:15