… but chemo sucks

I couldn't get up on Sunday.  The overwhelming "chemo" feeling made me roll over and go back to sleep.  A few times.  Just hoping that I could "sleep it off."

As the imagery shows, chemotherapy for my Hodgkins lymphoma works…

        ...but chemo sucks.

I can say that, I am in the middle of treatment.  This is not "negative," just dealing with the reality.  And working through it all.

The reality is I can count on feeling really bad at least 10 days a month, and feeling pretty good only about 4 to 6 days a month.  The rest of the time is a crapshoot. I'm often surprised when I think I'm feeling better, but then I unexpectedly have to just go lay down and check out…  (Or go surfing, catch one wave, and wash up on the beach with almost-disabling vertigo!)

It's the up and downs that make it tough. It's a mental game as much as anything.  Since I'm on a 2 week regimen, I'm actually feeling pretty darn good by day 12 and 13.  Weak as hell, but feeling good.  Just in time to go back in and start all over again. "Do I really have to, Doc?"

What does this feel like?

For me, initially after treatment, I feel like someone drugged me and kicked me really hard in the stomach.  Dizzy, nauseous, spacey… blah.  And knowing that my gut flora (those friendly bacteria that make digestion possible) is being nuked once again, and it will take at least a week to work through the constipation, gas and bloating.

I am figuring it out, but it seems every time is a bit different.

What helps?

• Acupuncture
• Colonics
• Cannabis
• Diet & supplements
• Rest and time outside

That last one is important.  Outside, fresh air, freedom...

But every other Thursday it's right back to the beginning again.

Sometimes I feel like I just have to pay my dues.  Complete my sentence. As if I'm playing a game and I landed on

              "Get Bit by a Tick: Do to 6 months of Chemo."

But this is real, and there is no "Get Out of Jail Free" card.  And there is no "Just Sleep it Off."

Even so, I am grateful to be living in a time when we have access to something that works.  Otherwise I would not be here to write this.  There is such a bright light at the end of this tunnel, and it's getting closer every day.  Ready for July!

Chemo works

The Dr said that Hodgkins responds well to the standard therapy.

Stage IV-B is pretty advanced, but true to his word, the "B" symptoms resolved themselves almost overnight. No more chronic coughing, night sweats, pelvic pains, extreme fatigue, and general flu-like misery.  Gone!

After 2 "cycles" (4 treatments over approx 2 months) I was feeling almost 'normal' during those fleeting few "good days" at the end of the cycle.  I actually became interested in doing things, and started catching up on yard work, auto maintenance, and some of the other things that have fallen thru the cracks...

They say a picture is worth a thousand words.  And modern medical imagining is an amazing technology.  Yes the patient is subjected to oral and injected dyes, radioactive tracers, and positron emissions, but the pictures tell the story…

Hodgkins lymphoma Stage IVB - Mar 23, 2015
Imaging following 2 treatment cycles 

Hodgkins lymphoma Stage IVB - Jan 14, 2015

Pre-treatment imaging

According to the medical report, "Hypermetabolic activity" is "resolved."  So the treatment is effectively halting the cancer that was slowly sucking the life out of me.

ABVD is a standard treatment for Hodgkins disease, first introduced in 1974.  One cycle of ABVD chemotherapy is typically given over 4 weeks, with two doses in each cycle (on day 1 and day 15). http://en.wikipedia.org/wiki/ABVD

April 9 was the sixth treatment, the halfway point in the prescribed 6 full cycles.





….

how I got here...

 I was standing in line at the DMV when the Dr called.

"You have classical Hodgkins disease.  I can make you feel better"

A shocking diagnosis, but it explained why I was not getting better.  In fact, with every week that passed I was getting worse.  "Unexplained weight loss" of over 30 pounds, months spent chasing symptoms, diligently researching, taking so many supplements it made me sick, and the endless fatigue.

Since many of my symptoms were typical for Lyme patients, it seemed I just needed to work out how to rid myself of this pesky bacteria.  I had endured 9 months of antibiotics, with much of that time spent laying in bed during the day, missing work, friends, family, and everything we take for granted.

The beginning of my story is posted here:

tick bite and rash

At the time I was sure the rigorous antibiotic treatment would take care of the infection and all would be ok.  I wrote:

"I will be ok, but it will take many months to recover.  Although my initial diagnosis and treatment was inadequate, I am now under the care of  a LLMD (Lyme Literate MD.)   But this was only because I knew exactly what happened and received good referrals.  Those less fortunate endure years of misdiagnosis and an endless misery that I would wish on nobody."

But the treatment was almost worse than the disease, and I was so sick, and getting sicker.

I had taken the standard 2 weeks of a single antibiotic immediately after the bite.  In hindsight I suffered severe "Herxheimer reaction" to that initial antibiotic, which should have been a warning to the doctor that I had been infected.  But I was so relieved when that was over, writing it off to a bad reaction to the drug and went back to daily life.

One of the first clues that Lyme had really got me was about 3 months after the tick bite - a swollen lymph node under my arm.  I also didn't realize it, but my declining mental function, blurry vision, and random joint pains were also a clue.  I had written it off to my advanced age (50 was just months away.)

They say stress can trigger Lyme (or cancer).  In September 2013 my wife, Alisa, had a terrible accident, falling off the roof and shattering her heel.  The stress of the accident and my new role as full-time caregiver pushed me over the edge.  My mental state deteriorated to the point that even washing the dishes was a major mental challenge.  This is typical with Lyme: http://www.igenex.com/psychological_effects.htm

Fortunately (or unfortunately) I know others who had dealt with Lyme disease.  So when my doctor said the standard lyme test was negative and there was nothing he could do for me I took a recommendation on a Lyme doctor.  This meant traveling 3 hours for an appointment and a series of long distance challenges ahead.  When the industry standard IgenX Lyme test came back positive, it confirmed my fears and defined what (I thought) was a path forward.

By March 2014, the lymph nodes in my neck were swelling up.  The lyme doctor seemed concerned, but I had no clue that cancer was even a possibility…

It wasn't until I found a new Lyme doctor in September 2014 and underwent a series of tests that things seemed atypical.  She told me, "I don't want to scare you, but this could be cancer."

She saved my life.