Tuesday, October 6, 2015

Cheeseburger, Cheeseburger

Way, way back when I was first starting to eat again after treatment, my strongest desire was for a cheeseburger.

Not just any cheeseburger, but a cheeseburger from Tasty Burger.

It's a small chain in Boston. I used to eat lunch there when I worked near the original location a few years ago.

In the fall of 2013 when I was craving that cheeseburger I was a long way from eating it. It took months to get back to eating most normal foods.

Plus, ground meat has been one of the most hit-or-miss foods. It must be the fat content or something else that varies with the particular meat: sometimes the texture of ground beef is fine and sometimes it is disgusting. Ground turkey has been really bad each of the few times I've tried it.

Today was my routine surveillance check-up at Dana-Farber, with Dr. Chemo.

All was well, of course.

It's now past two years since the end of treatment. Dr. Chemo said I'm now "on cruise control".

Nine months until my next appointment with her.

It so happened that my appointment ended at lunch time and Wonderful Wife and I were hungry. Tasty Burger is right down the street.

The result?

It was delicious!

How's that for a long range milestone?

Thursday, July 23, 2015

My Turn

Wonderful Wife has had recurrent annoying health issues related to her throat and jaw for a couple of years. She has seen an ENT for these issues several times and they eventually came to the conclusion that removing her tonsils was likely to provide relief.

One issue she has had is tonsil stones, formally called tonsilloliths (if you want to gross yourself out, do an image search for that). They felt constantly irritating to her. She described it as feeling like someone was constantly poking her tonsil with a sharp pencil.

In May she decided to go for it. She scheduled the surgery for July.

Then, as is her way, she started researching.

She discovered that a tonsillectomy is a pretty serious operation for an adult. The post-op nurse told me that they are roughly the size of golf balls in an adult. Those are a couple pretty big hunks of tissues to cut out of one's throat!

She also read about ways to prepare foods she'd be able to eat: lots of frozen fluids like broth, Ensure, Jello, etc.

Most adults do not like to eat a lot of ice cream post-tonsillectomy: the injury already causes increased mucous production and dairy exacerbates that for some people.

Anyway...

Wonderful Wife was going to need some TLC for at least a week. She would be in fairly serious pain.

It was time for me to pay back a tiny portion of all that loving care she gave me two years ago.

The ENT called me immediately after the surgery to tell me everything went fine. He commented that he thought Wonderful Wife's tonsils had more stones than any he could ever remember.

Also, almost under his breath, he mentioned that he was sending the larger one for lymphoma screening. Uhhh. I wasn't sure if his delivery indicated that it was completely routine, or that he was concerned but didn't want to give that away. He happens to be a practice partner of my ENT, Doctor B. So he knows my history.

I arrived at the hospital a short time later, with Progeny the Younger, and found Wonderful Wife in the recovery room. She had a huge smile on her face and seemed very happy. Probably a mixture of residual anesthetic and relief. She was still pretty woozy, but we got her dressed and wheeled out to the car and shortly thereafter I had her resting in bed.

We were told to take the opioids on schedule to stay ahead of the pain. So we set alarms for the middle of the night to keep her dosed up. I tried to help keep her fed and hydrated.

Recovery went pretty much as her research indicated it would. Surgery was two weeks ago tomorrow and she is almost back to normal.

During the middle part of recovery she became a fan of my favorite post-cancer food: Cream of Wheat. I've eaten it almost every morning ever since I resumed eating. Sometimes I have it for dinner, too, if I'm tired and don't feel like working my way through "normal" food.

The past week I've been making enough for two.

I don't feel like it was much, but I liked being to give Wonderful Wife back a little bit of the care she gave me.

Tuesday, June 16, 2015

Oh, Hello Fear. I Didn't See You Standing There!

So, yesterday was an interesting day. Since one purpose of this blog is to document the emotional journey of cancer I'll tell you all about it.

For a little more than a week I've had a persistent "side ache". It feels just like the stitch one gets from running. It comes and goes, sometimes almost disappearing and never getting worse than a 5 on a 1 to 10 pain scale.

The internet told me I had kidney stones.

That would suck. My friend has written that kidney stones produced the worst pain he has ever experienced. So I thought I had that to look forward to.

I gave it a week to resolve. I have arthritis that mostly affects my sacroiliac joints (the base of my spine and pelvis). I've had it since I was 14 years old. Mine is episodic and doesn't impact my life much (I'm lucky!). Arthritis pain can sometimes radiate strangely, so I figured that might be the source. But my normal arthritis treatment didn't alleviate it so I made an appointment with my doctor.

My doctor called in sick. I guess that's a thing? Doctors get sick, too?

They fit me in to see the nurse practitioner. She examined me and asked me lots of questions. We discussed my recent cancer.

Then she took on a look of concern, and what I heard next was, "blah blah blah WITH YOUR HISTORY blah blah blah CAT SCAN blah blah..."

My brain hadn't even gone there.

Well, it had. The internet search that told me kidney stones were a common cause of my symptom also mentioned kidney cancer, but way down the list. I had suppressed that idea.

It became unsuppressed.

I left the doctor's office to drive home to await a CT scan appointment. In the car I immediately started crying.

"I do NOT want to go through that again!"
"I do NOT want to leave Wonderful Wife and The Progeny!"

The fear of cancer's return was suddenly very present. And huge.

I went home and crawled into Wonderful Wife's arms on the sofa. She was reassuring, as always.

The CT scan took place in the early afternoon and I went home again. Shortly thereafter I got a call from my doctor's office.

"Your wet read indicates possible early acute appendicitis. Our advice is that you go to the ER immediately."

Well, that wasn't what I was expecting!

Funny that being told I might need emergency surgery could constitute relief!

The rest of the story is not so germane to cancer so I'll speed through it. I went to the ER, got an IV and a bunch of blood drawn and waited for a consultation with a staff surgeon. After about 45 minutes (an amazingly short ER wait in my experience!) the surgeon appeared. He said I didn't look very much like someone experiencing appendicitis. The CT report was actually ambiguous, with a mention of the appendix but no clear problem there. And I had no fever, no vomiting, a low level of pain and my white blood cell counts were normal. He was pretty sure my appendix was not the problem.

The CT scan also mentioned evidence of inflammation in the terminal ileum - the very end of the small intestine where it transitions to the colon. I had a similar report from my first colonoscopy five years ago.

Remember that arthritis I've had for forty years? Anti-inflammatory drugs, specifically NSAIDs, cause damage to the GI tract. That's the likely source of my recent pain.

So the surgeon recommended "we put the knives away for tonight" and sent me home.

I was exhausted.

I was surprised by how ready my fear of cancer recurrence was to rear its head. For a few hours I was terrified.

Thus wags the long tail of cancer.

I'll finish with some advice: don't do an image search for "terror".

Wednesday, May 6, 2015

Two Years

Two years ago today I went to see my primary care doctor, Doctor W, because I had the sensation of a lump in my throat when I swallowed.

I had given it a month to go away. Then I stalled for another month before I finally made an appointment.

I had no idea that rather than a routine visit it was the start of an adventure.

That feels like a very long time ago.

If you know me, you know I’m a pretty optimistic person. But I think life might be even better now than it was before cancer.

I feel joy even more than I did before; both more often and more intensely.

I tear up regularly when I encounter beauty. And I see a lot more beauty.

I perform more acts of kindness.

I frequently text or tell Wonderful Wife, “I am happy today.”

Last weekend we took the dog to some special woods for a long walk and a picnic. Wonderful Wife and Progeny the Younger backtracked to retrieve a forgotten item, leaving Progeny the Elder and me lying on the picnic blanket in the sun in a huge meadow of brilliant green grass.

I asked her, “Do you want to know what I’m thinking right now?”

“Yes.”

“I’m feeling very grateful that I am still here and that I get to continue being your Dad.”

Here’s to survival. Happy Anniversary to me.

Saturday, April 4, 2015

Life Expectancy

The other day Progeny the Elder asked me, out of the blue, "Dad, how old were your when parents when their parents died?"

"Well, my dad was about 35 and 43 when his parents died and my mom was about 45 and 49 when her parents died."

Silence for a minute.

"How old will I be when you die?"

"I'm not sure. A lot older than you are now."

"Will the cancer you had affect when you die?"

"Hmm. I'm not sure but I don't think so."

---------------

When looking for an image to go with this post I came across this life expectancy calculator. It said I'm going to live to the age of 87.23 years. That means I'll die at exactly 8:48pm on August 16, 2047.

Progeny the Elder will be 43.

Thursday, March 12, 2015

PBS: The Emperor of All Maladies

Back in July, 2013 when I was in the middle of treatment, I wrote about "The Emperor of All Maladies" by Siddhartha Mukherjee, MD. I read the book before I was diagnosed, on the advice of a friend, and loved it. Go back and read what I wrote about it previously.

Wonderful Wife informed me today that the book has been made into a PBS documentary series produced by Ken Burns. It is a 6-hour program that will apparently air on PBS over three nights beginning March 30. Check your local listings (or just watch it online).

I'm excited to see how the book translates to documentary film format.

Saturday, March 7, 2015

#RememberLisa

At the same time I was starting this blog, I was also learning that "cancer blog" is a thing. Many, many cancer patients write publicly about their experiences.

While I read a few entries on many cancer blogs in the beginning, there were four that I ended up following regularly.

The first was a Norwegian man named Martin who started commenting on my blog. He had a cancer similar to mine, but his recurred 18 months after treatment and his prognosis was poor. He was already starting to lose quality of life when we came in contact. He was a husband and father of teenagers and he tried hard to have as much quality time with his family as possible. His blog was called "Livskvalitet - eller tid? Obs! Ingen rosa cupcakes og lite retusjering.", which apparently translates as "Quality of Life - or time? Note! No pink cupcakes and little retouching." Martin passed away on January 30, 2014.

Next was Lindsey Miller, a young woman in Southern California with a rare liver cancer. Her blog was titled "I am a Liver". Lindsey had a three year battle with a cancer that seemed to be "chronic", i.e. one that she could live with for a long time. But she passed away on May 21, 2014 (my birthday).

Third was a young high school basketball coach and father of very young children from Idaho named Zack Ingersoll. He and his wife Nicole had a newborn when he was diagnosed with advanced esophageal cancer. Nicolle started a blog titled "Cancer: Game On" and relayed many inspiring stories of the incredible support Zack's family received from hundreds of people in and around their Idaho community. I found my way to Nicole's blog by way of a Facebook post by Wonderful Wife's best friend. Zack passed away on January 24, 2015.

The fourth blogger was Lisa Boncheck Adams, who is pictured above. Lisa was probably the world's most famous cancer blogger. She had more than 15,000 Twitter followers and posted more than 176,000 tweets and hundreds of blog posts during her eight year journey with metastatic breast cancer. She gained additional fame when two well-known journalists questioned whether it was appropriate for her to write with such frequency and honesty about her experience. One of them essentially asked, "why can't she die more quietly?"

It was during that kerfuffle that I started following Lisa.

While all of these people affected me and I felt a loss upon each of their deaths, Lisa was the writer I felt most connected to. She was insightful and intimate and poetic and real. (Well, they all were very real!) She frequently reminded us of her mantra:

“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”

She tried everything she could to have as much time as possible with her children and husband. She was very prolific until the last few weeks of her life. In the past few weeks I could tell by the decreased pace and the increased brevity that the end was near.

Lisa Boncheck Adams died last night.

I am writing this post while watching a movie with Wonderful Wife and The Progeny. I wanted to enjoy the movie with them but I've been thinking about Lisa since I learned of her death late this morning. While I was researching the links I had the last post from "I am a Liver"on my screen and Progeny the Elder, who was snuggled beside me, saw the photo of Lindsey and asked "Who's that?"

I couldn't speak to answer her question.

The Progeny had another opportunity to see Dad cry.

Fortunately, Wonderful Wife and I have managed to do very well being emotionally honest and open with The Progeny. We try to do that in all of life but we've tried especially hard when it comes to my cancer. Once I could speak again I explained what I was sad about. They gave me sympathetic looks and went on watching their movie.

Perfect.

I told Wonderful Wife each time one of my cancer bloggers passed away. She was following "Cancer: Game On" along with me. Wonderful Wife and I, at each passing, have thanked our lucky stars that my story appears to have a different, happier, ending. Although Lisa hated to be other peoples' "negative reference point" I'm afraid she was one for me and will continue to be.

My cancer bloggers are all gone now. May Martin, Lindsey, Zack and Lisa all rest in peace.

Coincidentally, I had my most recent checkup at the Dana-Farber on Tuesday.

All clear.