One year cancer-free

Well, it’s officially been one year since I got the all-clear. That’s right—365 days of not having cancer. I’m not popping champagne just yet (apparently, I have to wait until the five-year mark for that), but hey, it’s a start. And let me tell you, I’ve been making up for the down times.

First off, I picked up the accordion. Yes, the accordion! I’ve always loved the instrument, but I thought it was too complex and difficult to learn, and who has the time for that? Then I figured, if I survived cancer, I might as well try playing it—what’s the worst that could happen? I fail within the first week, and will be out of $300 for the used accordion and with lots of storied to tell. Eight months later, I’ve got at least nine songs under my belt. Sure, they’re all played at the speed of a sloth on sedatives, but hey, progress is progress. It’s been… an experience. My neighbors now refer to me as “the accordion lady". I’ve decided to take it as a compliment.

Secondly, volleyball. I’m back on the court, baby. Sure, I’m slower than I used to be, and my knees sound like a bowl of Rice Krispies every time I move, but I’m out there. And by “out there,” I mean I’m mostly keeping score, sending my serves over the net (when I’m not serving directly into it), and ducking when the ball comes at me to fast Progress, not perfection. 

Then there’s the travel. Oh, the travel—the recovery of the soul. After being cooped up with treatments, weakness, and hair loss (shoutout to my lovely turbans), it was so wonderful to break with our long-standing tradition for Thanksgiving and fly to Italy instead. Orvieto was perfect this time of year—quiet, charming, and full of pasta. I’ve eaten my weight in carbs, gotten lost in more medieval towns than I can count, and narrowly avoided scraping the rental car on narrow cobblestone streets. Pro tip: If you ever drive in Italy, just assume your side mirrors are sacrificial.

And now, I’m off to a wedding in Romania… with my hair almost one inch long. That’s right, folks, I’m practically Rapunzel now.

So, what have I learned in this first year of being cancer-free? Life is short, even if you don’t fill it with random hobbies (though I highly recommend the accordion). I’ve continued to embrace the chaos, getting involved in every activity I can think of, and never, ever take myself too seriously. Also, accordions are much heavier than they look. 

Here’s to year two—may it be filled with even more adventures, questionable life choices, and maybe even a decent rendition of “Libertango” on the accordion. Cheers!

the D day

Today was the day I finally had my first post-radiation doctor's appointment, and let me tell you, it felt like the grand finale of a dramatic medical drama. Cue the suspenseful music! After all, I'm a bona fide cancer survivor now, and who doesn't love a good survivor-turned-superstar story?

"Congratulations," the doctor says with a grin that could rival a Cheshire cat's. "You're officially a cancer survivor now!" I half expected confetti to rain down from the ceiling and a marching band to burst through the door, but alas, it was just me and the doc.

According to the all-knowing Dr. Google a bit of cancer survivor statistics: 

Apparently, as of January 2022, there are a whopping 18.1 million cancer survivors in the United States, which is approximately 5.4% of the population

So officially I am in remission and if all signs and symptoms of cancer vanish into thin air, doctors might start throwing around words like "cured" after you've been symptom-free for five years.  So starting the count down...

So there you have it — today's appointment was the grand finale of my cancer saga,  and an much expected happy ending. 

Signatera test

I finally got back the results of the Signatera test. 

Official definition: the Signatera test is a blood test that can detect molecular residual disease (MRD) or recurrent cancer. The test looks for circulating tumor DNA (ctDNA), which are small fragments of DNA released by cancer cells. The test is custom-designed for each patient based on their unique set of tumor mutations.

And my results are negative, no tumor DNA was found so far circulating in my blood.

Radiation recovery

As usual, I keep fooling myself into believing I'll dodge those grievous side-effects that I was warned about, just like I lucked out with my two rounds of chemo. But nope, radiation decided to break the rules.

For the first 15 sessions, I was practically breezing through – barely any changes. However, after crossing that checkpoint, it's like the side effects started to accelerate in a geometric progression. 

And now, even a whole 10 days after ringing the final treatment bell, my left side is casually shedding skin layers like an aging python. Pass the daily compresses, please!

Symbolism

Symbolism is everywhere... 

On my last day of radiation, George and I decided to get lunch as a celebration and finally try the Japanese restaurant on the final day of Boston restaurant week. We drove to Kenmore Square and ended up smack in the middle of a cancer walk with crowds of people dressed in pink going past the restaurant. The restaurant was full and we couldn't get in without the prior reservation weeks in advance (a sign to switch to healthy eating maybe).

All these people in pink made me think that it was some sort of fan club for the movie "Barbie" 😂 that I hear is quite popular, before I read the signs for breast cancer.

I thought it would be great and quite symbolic to get a picture of a breast cancer patient with the pink crowd. A few pictures and several hugs from random strangers -- I take it as a great sign from the universe that hopefully this experience is over and I can move on to better things...

Last day!

Today is my last day of radiation -- out of 30 in total! After the 15th day, the burns started to come out and I couldn't walk around without a cream soothing compress and ibuprofen... but I went on with life and made do and went back to the radiation rack daily.

Not sure if I am special (most cancer patients get about 15 radiations on average, I am told), but on my last day the hospital staff gave me a soap bubble shower spewing out of a hippo with musical accompaniment. I was even allowed to take a picture of the "torture chamber"! :)

So it is a huge relief on many levels: 

• First that it is over, in terms of cancer treatment regiment that was prescribed so far; 
• Secondly, now that the radiation is over and I can start to heal the burns (they should recover in two weeks they say) 
• Thirdly, I feel "born again" and can now plan my life beyond just the next week. I am thinking of picking up accordion playing if I manage to get one for less than $400, and organizing that fateful trip to Iceland that I was planning for my last birthday in the middle of chemo...

Radiation update

Well, I had my planned conversation with the doctors about when to stop my radiation treatment, and we finally agreed that I would stop at 24 treatments vs prescribed 30. And I was so planning to have my last treatment August 10th (coincidently my son's birthday) -- to have one big celebration party.

However, once I got home, my daughter went crazy, called the hospital and insisted that I finish up the entire length of the radiation treatment. She kept chanting "only six more", but then she would feel that I did EVERYTHING possible to deal with cancer. 

And resisting your child is so, so much harder than doctors --- so I am back in the hospital this week again, for my daily dose of radiation.

Medical fatigue

Couldn't find medical fatigue as a term, but after seven and a half months of treatments I can easily say that I am now at a state of medical fatigue. It is not the cancer per se or even the difficult treatments, it is the burn out of these never-ending hospitals, pills, appointments, fatigue, blood work, daily radiation, etc.

I am getting tired of being constantly exhausted.... though I think, I actually have it easier than most. I still manage to go to parties, birthdays, occasional concerts or even Cape Cod. I even managed to play a few volleyball games a week ago -- so I am more than half-way back to normal life, and it is still exhausting. 

People who have it harder than me, with harsher side-effects, or less of a support network -- I keep thinking, how do they do it? How do they stick it out and not flip the switch to stop all treatments and just do a life reset, at least for a while?

20 radiations

So, I finally have 20 radiations under my belt... and now my skin is burned, my muscles start to hurt, and my fatigue is back to the level of my chemo days. 

I was given numerous creams, pads, ibuprofen --- and the question is always there -- is it worth it? Why do I have to have 30 radiations, even though I had a complete response (no cancer cells were found after chemo and operation)? 

I ask: If I didn't get a complete response, how many sessions would be required? Still 30.

Per Dr. Google: By what percentage does radiation reduce recurrence of breast cancer?

"Radiation does not appear to prolong survival. Even though it does significantly decrease the chance of the tumor coming back, after 10 years it was only a 10 percent recurrence rate without radiation. With radiation, it would reduce the recurrence rate to about 2 percent."

Finally, I met with my doctor and managed to get more specifics -- 24 sessions are treating my clavicle area (as they can't operate here) and the breast, and the last 6 are just the breast.  So I am thinking of doing another 4 and then being done with this, stopping at 24 total instead of 30.

Half-way point

I am at the half-way point in my radiation treatment --- the 15th session out of the required 30! 

Most people in my radiation wait room get to celebrate and leave around this mark (average treatments are 12 to 15 sessions), so now I am starting to see new faces and I am becoming the "old-timer" in the group.

I have tried to figure out why I am getting double the average sessions considering that I had a "complete response" to the chemotherapy, but the only answer I got was -- this is the protocol based on the studies for triple negative breast cancer. And, yes, there is currently an ongoing study to figure out if patients with complete response actually need less radiation instead of a lot more -- but as it is ongoing, we are still following known protocols.

Touching care

You see the same faces in the radiation waiting room, swapping diagnoses and life stories and cheering for the ones that had their last treatment in a very American comradery and support.

There are a few chairs, a table with the monitor for treatment delays and a coffee table in the corner that has a small wire stand.  

On that wire stand there are origami birds or crocheted pink bells, and today one of the women, who had her last treatment brought handmade bracelets. These are for anyone to take to give you some encouragement, or hope ... you can take any one you like or pick the number of how many treatments you had today. I got my #8 (most of them go up to 15, which is the standard number of treatments).

How very American that it is on such an individual level to reach out to strangers that share a similar burden and help and encourage them with these simple tokens.

I am thinking that even though I am not crafty, I also want to make a few somethings for that wire stand. Probably numbering up to 30 at least, as this will be my final number of treatments.

Daily radiation

It has been now 5 days of daily radiation treatments for me, each taking about 20-25 minutes.
The late morning drive to the hospital in the middle of Longwood Ave in Boston is unhurried, and I feel like a city girl now, in the know (even if only from the window).

And now getting through the complicated building maze is a breeze -- go from P1 to 1Star to P2, then down the Yawkey corridor through the closed doors to the purple card scanner and off to the changing room. 

So far, everything seems relatively easy, and about an hour or two after I get home my body gives in and I sleep for an hour or two... but that is about it. 

It feels that the door to the end of the corridor is halfway opened, and light is coming through, and there is just another month to go in this predictable pattern.

Radiation day 1

For my first official radiation treatment I arrived on time (!) as now I have the maze all mapped out. Believe it or not, I have written down the step-by-step instructions of how to get to and from the den of the "purple machine" and there are at least 11 points.

I waved my purple admission card and within 20 minutes was on the gurney. The procedure itself takes about twenty minutes of timed "breathe in - hold - breathe out" instructions by the nurse and buzzing sounds. All that holding your breath is crucial so that the protons don't burn through my heart valves or seriously damage my lungs. 

I am working on trying to treat this as a guided meditation... Covering my eyes to avoid the red beams helps.

NY trip

After going through the trial run for my radiation setup but before diving into the daunting task of 30 daily sessions with the beast, I was granted a sweet one-week reprieve. So, we decided to visit  New York City over the 4th of July holiday. 

Now, experiencing NYC in July was a whole new level of sensory overload for us. Despite the sweltering heat, a lingering scent in the air, and getting stuck in a subway car, we managed to make the most of our time and enjoy the city. The museums, as always, were soul resting place. MoMa was superb, as always.

Now, here are a few valuable lessons I learned as a cancer patient navigating through the concrete jungle:

Central Park survival tip: Treat the park like your personal oasis of benches. Taking a mandatory 10-minute rest on each one is crucial to avoid complete exhaustion. Trust me, it's a game-changer. 

Ladies and gentlemen, introducing the must-have fashion accessory for the barely-there hair club: the wide-brimmed hat. Not only does it shield your delicate scalp from the sun's relentless rays, but it also adds a touch of glamorous mystery to your overall look. 

Here's a little secret: Approximately one-third of the New York population looks just like you. That's right, you're practically a local! So, as long as you wear some flashy, oversized earrings, you'll effortlessly blend into the vibrant tapestry of New York. Consider it your secret identity amidst the bustling crowds.

Radiation final run

Turns out, before the radiation treatment begins, there's this "final run" stage. So here I am at Dana Farber in Boston, ready to take on the real deal with the mighty "purple" machine.

First things first, they don't make it a walk in the park to find this place. There are countless radiation oncology departments scattered across Boston buildings, and some are even hidden within a maze of interconnected structures. I felt like a character straight out of the Maze Runner series, starting off in the basement of L2 for oncology radiation, diligently arriving on time, only to be told that I'm in the wrong building. Now, the mission is to ascend to the main floor, hop on another L or M elevator, navigate two internal bridges, undergo Covid screening (because, naturally, one of the buildings in this monstrous complex still requires it), descend yet another bridge/corridor, ride down the P2 elevator, cross the Yakey building connector, and finally reach the promised land. And all they had to say was, "Just ask for the 'purple machine' if you need directions."

Well, as you can imagine, no one had a clue about the purple machine. It took every ounce of my agility and problem-solving skills to conquer the challenge within a mere 15 minutes. I triumphed over the maze!

Now, the actual radiation trial wasn't too different from the measuring day, except for the fact that I had to shield my eyes from the never-ending flashes with a towel. That's right, I became a master at fending off those blinding bursts of light.