Chemo Karma

It's been a couple of weeks since my last blog entry.  The main reason for the absence has been due to my health.  The secondary reason is that I dislike posting anything negative.

I made it through 5 and a half weeks intensive chemotherapy with few side effects other than nausea and cramps, and considered myself very lucky.   The radiation also caused a lot of pain that accumulated over that time, but all these things were manageable with my prescriptions.  

Then, about 2 weeks ago, just after my last chemo treatment the side-effects hit me like a truck.  I can see now why they scheduled so much time between chemo and surgery.  I can only hope the radiation and chemo have done as much harm to the cancer as I feel they've done to me.  I find it odd how well I made it through the all of the chemotherapy with so few reactions, then KABAM it all hits me afterwards.

The last week has been pretty bad.  I slept a lot.  I was unable to eat anything without becoming violently ill.  And my brain has been too fuzzy to focus much on anything.  Driving has been out of the question, and if not for the help of a couple of friends I might have just faded away.

The last few days have been a little better.  I managed to eat a little yesterday and today: a total of three bananas and a sandwich.  It's the first food in almost a week other than fruit juice and pudding I've been able to keep down.  The nausea seems to be fading a little as well as the pain in my throat.  Fingers crossed it keeps getting better.

Ouch

I take back everything I said about wanting this to hurt.  The accumulated effects of the radiation really hit this last week. 

Post Chemo

Chemo has caught up.

I may be officially done with chemo and radiation, but it appears they are not done with me.  It's been a rough week.  Suffice it to say the magic words nausea, cramps, vomiting, pain, more pain, and side effects, and you get the idea.   The oddest side effect is what I call the "Burnt mouth effect".  My mouth hurts as if I've burned my tongue.  My taste buds act as if they, too, have been scorched.   Eating and drinking anything has become a real battle against nausea.   Swallowing is a battle against pain.  It sucks.  Keeping my pain meds down is a problem.  Ironically the only thing that makes my throat feel better is a clove cigarette.  Can that count as medical usage?

Three weeks ago something happened that I should have included in my blog but didn't.  I was hoping the situation would resolve itself and it did, sort of.  My immediate support network of help collapsed.  The two people who had been helping with rides, medical paperwork, etc, completely and without warning stopped helping.  Furthermore, one of them had my entire file of medical documents in their backpack and became impossible to contact.  The reason for their sudden and inexplicable betrayal seems to spring from the mistaken allegation by one that I had become romantically involved with the other.   I can't express the ridiculousness of such an allegation nor can I explain where it came from, but it destroyed a friendship and lost me an invaluable support network when I needed it most.

My brother to the rescue

About the same time my support network went down, my brother arranged to come visit to come in from Denver and see me through the last week of chemo and a week beyond.  Like the cavalry arriving in the nick of time he was on the scene to go with me to my last chemo and week of radiation.  His presence has not only been crucial in helping keep me functional, but the psychological joy of seeing him again can't be properly measured.  Thank you Troy, and thank you to his wife Tara for making this visit possible.  I know this has to be insane-crazy back home in Denver for his family right now with all three sons to juggle. 

Meanwhile I'm working with my ex-wife to arrange having my son out to visit before my surgery.  Fingers crossed: I want so very much to see him while I'm still relatively healthy before the main hospital adventure begins. 

Chemo Savvy

Medications and Chemo: such stuff as dreams are made of.

I've always had vivid nightmares.  The medications and chemotherapy have made them all the more unbearable.  I just awoke from one that promises to keep me awake for several hours.

At first I was staying in a hotel, some pay-by-the-week run down dive of a place,  I was alone but it was obvious in the dream I'd just had some break-up with someone I cared about.  In the dream it was night and I'd just returned to the hotel after going out for dinner.  Almost immediately I was "attacked" by a ghostly girl in a sheet trying to strangle me.  I fought her off and tried to speak to her, and she revealed she was a ghost trapped there from a suicide and wanted someone else to die in the room to keep her company.  I was talking to her when the door opened, and it was a woman I'd never seen before but apparently married to in the dream.  She said she had heard me talking through the door and knew I had someone hidden in the room, then shot me through the throat. 

The dream transitioned so I was a child in an old turn-of-the-century sanitarium.  I was sick and vomiting on the wide, Spartan stairs in the night.   A doctor was watching, he was my father, helplessly as a nurse held me.  I was vomiting up pins and needles and tiny brass keys and cogs, and the nurse was saying that my illness was a psychic curse for which there was no cure.

Then I woke up in my room into reality this time, choking on the pain in my throat.

Such are the things my dreams are made of.

I'll be very, very happy when I'm off these medications.

Last week of Chemo and Radiation

Here it is Sunday evening and my last Chemotherapy is this Tuesday and final Radiation treatment is Thursday.  Time has certainly passed with amazing speed.  As clichéd as it sounds, it feels like last week I first reported in for treatment.  The constant medication may have something to do with my sense of time dilation, but I really have little sense of passing time.

In all honesty this last week has been difficult.  The effects of chemo have been catching up with me and it's been pretty rough.  Even so, I'd not have it any other way.  The rougher it is, the more I know the treatment is hurting the cancer.  That's my motto.

The hardest part of the chemo effects is actually the least painful.  I'm having extreme difficulty keeping my attention focused and am prone to sudden expected periods of complete mental exhaustion, but my brain is functional enough to be completely aware that it's not working properly.  If I were in a happily drugged state of semi-consciousness it might be better, but I'm fully conscious of the fact my brain isn't working as fast or as nimbly as it should.  It's a very scary experience, like being in a car going at high speed but realizing the steering wheel isn't working.  

On the plus side, however, my brother has arrived to help out!  He couldn't have come at a better time because I'm seriously not up to driving currently.  But his help and support goes far beyond that.  In the last day since his arrival he's fast becoming my pillar, my foundation, to keep me propped up as I head into the 5th week of my treatments. 

 I seriously doubt I could do this without him.

One week of treatment to go... Counting Down!

It is now May 2nd and my chemo ends may 8th and radiation ends May 10th.  I am extremely excited to get the subsequent test results to see how the cancer has responded to the process.  My primary fear is that I seem to have an unexpected super hero power: an immunity to radiation.  The Radiologist has expressed profound surprise that the skin on my chest has shown absolutely zero reaction to the radiation.  No burns, no rashes, no effect on my skin whatsoever around the targeting areas.  This is apparently unheard of.  So, my plan to be radiated into a Marvel super hero has been set back by my epidermal resistance.  I can only hope the cancer cells are not so resistant.

I am planning a Big Party for the weekend of the 10th / 11th to celebrate getting through chemo / radiation.  I expect I will still have some sparkle from the radiation and am planning on giving out little radiation  badges as party favors. 

Radiation this week has gone well other than their sign-in computer constantly "forgetting" that I've signed in.  But if that's the worst of it, then I'm doing very well indeed.

Chemotherapy Tuesday knocked me off my feet for a while (literally and metaphorically), but that which does not kill me, hurts my cancer.  I hope Nietzsche forgives me that misapplied quote.

There has been a problem getting my daughter out for a visit due mostly with her work schedule.  I'm hoping that can be resolved before my surgery later this month.

On the plus side, my brother Troy is coming out to see me through my last week of chemo and recovery before the surgery.  I cannot express how happy this makes me.  My uncle Dickie has arranged to pick him up at the airport this Saturday!  This is joy unbridled.

I am also working with my ex-wife Julie to have my son Alex and she come out to visit before surgery.  The snafu in that process is paying for their air-fare, which is an extreme hardship for me but I'm optimistic we can work something out with the help of my family.

That's all the news that's news from here at Lake Woebegone where are the results are above average.  Stay tuned for further developments!

8 days to go

It is now only 8 days until my last Chemo session and 9 till my last radiation.   

I'm planning a party to celebrate on the weekend following the end of the treatment.  While it may be a self-serving excuse for a party, I think getting through the treatments deserves some special celebration.

Within two weeks after the end of treatment I shall be scheduled for a battery of follow-up  scans, and then onwards into surgery!  Excelsior!

The last week has been a little rough as the combined effects of treatment take their toll.  It occurred to me that my current pharmacology assortment is actually designed to treat me for the effects of chemo as opposed to actually being anti-cancer.  It's a sobering reflection on the toxicity and efficacy of the treatment itself. 

Chemo is essentially applied poison directed at the cancer: the trick is to do more damage to the cancer than to healthy cells, i.e. me.  

I once wrote I was eager to feel the "damage" being done to the cancer.  I can now say I'm achieving success in that regard.  The moral of that is to be careful what you wish for.

With all that said, however, I will add that I'm doing very well so long as I remember to keep on top of my meds.  

I'll type more tomorrow after I return from chemo.  

Here's a photo of my current drugs.  

 

The Most Astounding Fact: a video by Dr. Neil deGrasse Tyson

Misadventure, video, and unexpected grace.

Today was a day of misadventure, covert video, and unexpected grace.

I decided to get some video of my radiation treatment and smuggled my camera into the therapy session. As I reported earlier this week, the staff often plays music during the procedure and I wanted to show my blog readers what it was like when a certain song started playing. The loud "buzz" sounds you hear are the actual radiation emitters, and as I also said earlier in my blog, there's a static electric charge that plays ticklish over my chest hair as it zaps me. The radiation itself is starting to really do its job, and I'm glad there's at last some pain to feel that I'm doing some damage back at the cancer.

Here's my video.

 But my adventure today didn't end with my video. I was hustling to reach my appointment in time and had thought my jeep would have enough gas to skip refueling until afterwards. I was wrong. Jenny (that's my jeep's name) got me to the appointment in time, but alas she must have been running on fumes because I returned to discover her gas tank as empty as I felt. So there was in inevitable calling of friends, then approaching strangers to borrow a gas can, and then a walk to a gas station, return with a gallon, drive to gas station, drive to return the gas can, and then home to rest.

But something happened this morning that transformed everything.

When I arrived at my appointment I discovered the same volunteer playing piano who had been playing last week. It turns out he does this every Thursday. I decided to catch a bit of his performance on video, and accidentally got an exchange between a little girl present for her treatment along with her brother. Both looked to be around 8 or 9 years old.

 If you listen you can hear the brother talking about his sister. This little girl has an amazing brother, and although you can't see them in the video (just listen for their voices), he had shaved his head to help show support for his sister. That children should have to endure this ... it tests every foundation of faith from every perspective. At least it does mine. Those kids are the real heroes in this battle, and I found myself praying for them. The agnostic in me had no choice.

I got the volunteer to talk a bit during a break. He is doing something amazing just by being there and playing his music. There is grace and transcendence in music. I wish I could express it better.

A Very Special Piano Man

Phantom Tastes and Surreal Moments in Radiation

My apologies for the delay in updating. Last week was extremely hectic due to A: preparing for two mysteries performed over the weekend, and B: the mid-way point in Chemo and Radiation have begun to really kick in. My blood work from today indicates a drop in protein so I'm focusing on that. I'm including a scan of this week's lab work compared to last week's, and while most of the numbers are holding good, there is room for a little improvement.

Regarding chemotherapy, my doctors assure me these next two weeks will be the hardest, to which I say, "bring it on!"  No matter how bad it feels for me, I know it's worse for the cancer, and the one thing I dearly love is the idea of hurting it back.  Does this make me a masochist or a sadist?

Keeping a healthy diet is getting difficult.  I have no appetite.  I have no sense of taste or smell due to chemo, or when I do, it's distorted.   Throughout my life I've enjoyed a very keen sense of taste and smell.  These senses have often been more valuable to me than sight and hearing for picking up subliminal cues and details.  Now everything tastes and smells weird, or not at all.  Everything is blandly neutral or repulsive, or worst, a mixture of metallic flavors mixed with chemical smells.  So I am now treating food and drink as medicine, setting aside specific amounts to be consumed on a time-table like prescriptions. I can taste extreme spices like cayenne peppers, but I avoid these due to a possible reoccurrence of the acid reflux potential which caused the cancer in the first place.  I'm normally a very taste / scent oriented person but this is like I'm hallucinating with my mouth and nose.  Phantom odors and chemical tastes are a surreal experience I can't quite describe adequately. 

Swallowing in general has become painful and difficult.  The radiation is burning away at the cancer inside my esophagus, which is most excellent, but it is also doing collateral damage to the surrounding tissue.  This has made my voice raspy and induces great pain whenever I take a deep breath or attempt to swallow.  Even swallowing a sip of liquid  is becoming a painful act of will.  I find myself increasingly reliant on pain medication.  My brain hates this reliance.  When using the pain meds I feel mentally dulled, slowed down, distracted.   So I find myself avoiding the pain meds until absolutely necessary.  It's a trade-off I'm willing to make.  For now.

Today's radiation therapy provided a very surreal moment all on its own.  The attending staff generally play music over the speakers as the giant mechanical donut machine zaps away at the cancer.  This can be relaxing and helpful while laying motionless as the machine rotates around you.

Today it took such a surreal turn that I almost fell laughing off the table.

To give you a better visual idea of the machine and process, see attached image below.  

The process is simple: I am placed shirtless on a narrow table with bars, and my head is fitted against a molded-depression as my arms are raised above my head to grip a steel bar above me.

The lights go down, laser guide-lines are projected against the crosses and ex.'s on my torso, and the Giant Mechanical Donut dances around me zapping radiation into my chest.

Well, if that isn't surreal enough, today's musical choice was a Johnny Cash Medley, including "Burning Ring of Fire."

I was deeply amused.

Please note these are stock images  used in this image, but this is the EXACT model series of the machine used in my treatments and are identical to what I experience every weekday.  They don't allow cameras in the actual radiation room so I pulled these images from the machine manufacturer's web page and other image sources.   The last two reflects more reflect my twisted imagination as to what they may actually be doing in the control booth and the unbridled affects of any unforseen radiation mutations.  :)

Wednesday Update

Third week of chemo and radiation and so far so good!  There have been some minor problems with pain but the new meds are doing wonders.  

I obtained a copy of my new blood tests Tuesday to compare with my test results from when I started chemo and am including a scan of them below.  Overall I am maintaining excellent levels and keeping my weight steady.  Go Todd Squad!

I've been working hard on my nutrition and lifestyle, and most importantly on me.  I've come to see  this is an opportunity for rebirth.  The first half of my life was been filled with so many mistakes, regrets, self-destructive and childish things.  This cancer represents change inexorable and inevitable.  I may not be able to control the inevitable.  The end comes for us all eventually,  But I am able to define me, and this I can do.

 I am determined to use this as a rebirth, a phoenix metaphor if I may.  Getting through the surgery is only the beginning.  There will be monthly tests at first, then sporadic as I begin the 5-year process to reach a quantified "cured".   

The changes I've been making are only the beginning of an entirely new lifestyle.  Better choices, a different perspective.  This is the start of the second half of my life, however long that may be, and it is a chance for me to try to be a better person in every way I can control.  This cancer is trying to kill the old me.  Let it.  That me was messed up in so many ways, a life of mistakes and bad decisions and good intentions failed..... Whatever "me" that emerges from this, however successful I am in fighting the cancer, the "me" that is to come is going to be a different me, and I'm embracing that in so many positive ways.  I may not be able to atone for my past mistakes, but I'm determined not to repeat them.  I may make all new mistakes, but they will be made from a better place, a different perspective.

 I'm visualizing this as a sort of birthing process, to become a better person.  This is my goal and the way of life I'm trying to live.  As I just told a very dear friend of mine, I intend to take the best part of me and distill it into a better future me, and the future is now.

Musical mood today