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.

Radiation prep

Today was my first encounter with radiation. 

Now, before DF could unleash their proton firing squad, the lab has to meticulously measure and calculate all the angles. I had the pleasure of experiencing this preliminary measurement extravaganza today in the basement of the DF Boston building. I completely forgot how freezing it is in middle earth..

Imagine this scene: you're lying there half-naked on a rolling pulley, while the lab assistant diligently marks your body with sticky notes and markers using a regular high school ruler. And just when you thought it couldn't get any weirder, you glide in and out of a doughnut-like contraption. As if the ruler-wielding assistant and the donut machine weren't enough, they throw in a breath-holding challenge. For a solid 15 seconds, I had to strike the perfect pose, with my ribs held upright and my breath on standby. 

As I went through these peculiar motions, a thought struck me: with 30 sessions under my belt, I might just have what it takes to become the next "naked sushi" sensation. Picture me, effortlessly lying still and holding my breath, all while people enjoy a fine dining experience on my body. 

The beginning 0f a grand adventure in the radiation lab, where freezing temperatures, ruler-wielding assistants, and contortionist-level breath-holding skills are all part of the package. 

I radiation treatments start July 10th

Cancer statistics

Breast cancer is one of the top three cancers in the US, after lung and prostate.

Approximately 13% of women (1 in 8) will be diagnosed with invasive breast cancer, and 3% (1 in 39) will die from the disease in their lifetime.

Breast Cancer Statistics, 2022 - Giaquinto - Wiley Online Library

During out last's week book club, it turned out that out of 8 women around the table, 4 had some form of breast cancer --- mine was the most severe out of the group...but still it is telling how widespread it is. Granted, we are all probably in the right age group to start getting it, but still most of us are under 50 years old.

Post operation

Continuing about my extended Monday at the hospital. 

After the blood draw fiasco at 12 pm, I met with the post operation nurse, who was able to look at my lymph nodes. Both the port and the breast incisions healed well, but the lymph area started to go numb and a seroma formed that was hindering normal movement. This is a lump under the armpit cavity, numb and full of lymphatic fluid.

It turns out that 50 % of the time after surgery, a lymph pool forms at the armpit cavity. The nurse removed it by aspiration, which means inserting a syringe and drawing it out. I didn't look as she was doing it, and she kept asking whether it hurt, and I said it didn't, but I lied!

George held my hand, which was very nice. He says it took 6 large syringes full of red fluid, 90 ml, more than she expected. Another, how to I get this off later, bandages... and I was told that for another week or so there is a 50 % chance that I would get another seroma.

Than, there was half and hour with the radiology specialist to sign my life away, so that they could schedule the preliminary measuring tests and, finally, we headed home

Not that unexpected

Monday was the day I had several appointments scheduled in the hospital:

9 am blood draw

10 am meeting with oncologist

11 am Keytruda infusion

12:30 pm post operation checkup

2 pm preliminary meeting regarding radiology

But everything sort of went side-ways starting with the labs. My port had been removed during the operation (thank God), because I believed it was infected as it never really stopped hurting. It was implanted back on January 5th and after several weeks you are not supposed to feel it. Five months later, even wearing a t-shirt over it was sensitive. 

So now, the labs and the infusion would have to be done via regular IV. For almost two hours several nurses, including the specialist, were unable to find a vein for me, and we finally gave up. My veins are tricky, but this day probably some planet was in retrograde, and even with all the fancy equipment they were not able to draw blood.

And, consequently,  my schedule was in disarray, and at 10:50 am we met with my oncologist. She brought a study graph and explained that even though during chemo Keytruda is key, once the chemo is over, according to protocol there are 5 more infusions, but the efficacy of those is not that obvious. The difference of recurrence without these treatments is less that 2%, but the side-effects are still there.... so, considering that getting an IV for me seems to be in the realm of the impossible, we decided to forgo the left over treatments for now. So we crossed the Keytruda infusion from my schedule.

Grand Slam

Sunday at 7:30 pm I got a happy call from my surgeon -- she got the results from the pathologist, and I have what is called "a complete response": disappearance of any signs of cancer. That in itself doesn't mean that the cancer is cured, only that the chemotherapy killed off whatever cancer cells we knew about.

The cancer cells might still be in the body and might start growing again.... but we don't worry about it now. I still have several Keytruda infusions (4) and over 30 radiology treatments to make sure the cancer stays away, but at least there is a light at the end of the tunnel.

Operation day

Thursday June 1st, on the day of the surgery, Gwen dropped us off at 6 am at Faulkner Hospital. My surgery was scheduled at 7 am.

 After registration they whisked me away to prep for surgery: to hear about all the risks, to sign all the paperwork, to meet the surgery team, and --- most importantly--- to get the IV in. I always have trouble with the last one...

I am fair skinned with lovely blue veins, which are oh so deceptive, but no one was interested in listening to me. The nurse tried to get the IV into my wrist twice, but both times the veins popped leaving me black and blue. Now, I have been down that road so many times and I requested the professional IV people (turns out in MA you can always request one after two unsuccessful tries). The IV nurse was able to finally get the IV in, though painfully searching inside my vein for a while -- I was just grateful it was done at least in only one try.

I devote so much time to describing getting the IV, as it was the most dramatic event of that day. 

Once the IV was in, I was cruising down the corridor counting ceiling lamps... and then I woke up in the post-op station after the operation because George was squeezing my bruised hands. 

13 lymph nodes were removed, a breast lumpectomy, and, finally, the port was removed as well. The tissues were sent to the pathologist to figure out whether I actually still have cancer or not (diagnostically the only almost sure way to know).

We grabbed an Uber and by 12:30 pm we were already home. After wolfing down some leftovers, I crashed and slept for several hours.

So, of course I was super bruised and covered in bandages, but not much more pain beyond that, to the extent that I didn't even eat the painkiller tablets. I thought I would wait till the evening and eat one before going to sleep to hold me over through the night, but it never even got to that point.

Operation

Operation was done this morning at 7:30 am. Alive and back home recovering. 💓 to the millions of messages -- will get back to each and everyone of you once I sleep it all off.

Pre-operation prep

The day before my operation, I had to go through a series of delightful events. First up was the blood work and then pre-operation RSL. According to Google, RSL involves sticking a radioactive substance right smack in the center of my target area. In layman's terms, it's like having a needle play pinball inside me with a radioactive ball.

So I checked my schedule and realized that the blood work was scheduled at Dana Farber in Newton, while the RSL was at Dana Farber Faulkner hospital in Jamaica Plain, with a measly half-hour gap between them. Now, I may have survived all the chemo like a superhuman, but teleportation isn't one of my superpowers. Sadly, I couldn't magically be in two places at once, especially not in half an hour.

After a hour on the phone (by this time it was evening and I was bounced between several schedulers) I was told that the blood work in Newton was cancelled and that I should just "drop by" Faulkner lab and that the hospital has my order and everything was now all set.

Fast forward to the next day -- Faulkner lab spent a hour trying to figure out first who I was, then if there was an order, and then trying to "unlock" that order. After an hour I walked away with no blood work, hoping that it would not be a crucial requirement for the next day's operation.

The second act of the play for the day was the radioactive insert. I found myself in a freezing room, half naked, feeling like a contestant in some survival reality show. I had to sit with a straight back in an uncomfortable chair in front of the ever fun mammogram machine that always feels like something out of a medieval torture chamber, but the real star of the show was the array of endless needles on a table. They could give any horror movie prop a run for its money, the only thing missing was the drill... I kept having flashbacks to all the mafia tortures in the basement from a few movies I watched while fatigued and in chemo brain fog.

The procedure itself wasn't a walk in the park, but not as scary as the buildup in my head waiting in that freezing room.

Update

It has been a busy several weeks...

First, I had this image in my head, that once the chemo is over, I would be running around like a mountain goat, finally feeling the oh so missed energy of the everyday life. Not so fast. It took another week, till about May 15th, to fully recover, so that I could easily be up and about half the day and get to crawl into bed around 5-6 pm. And surprisingly,  though the chemotherapy supposedly left my body by then, I got several side effects unexpectedly popping up: dry, brown lines on my nails, persistent cough, and sweat.

Secondly, my oldest got back from college and did a week worth of training for her internship -- so there was quite a lot of driving while we were fixing a car she could use. And I was that designated driver most of the time as our household was stuck with just one car.

Thirdly, May is the month for all the end of the year concerts, plays, etc. that I was able to be part of.

We even managed to hold a handmade "vareniki" -- Russian dumplings with cherries or potatoes -- party at our house...yummy!

In one word -- busy, busy life, even if I am still not on a full capacity, more like 70% battery.

And now I have about a week before the operation, and I have to prep for after the surgery (they said at least two weeks, if not more of rehab) and organize the house/food/bills to be able to get away with not moving my arm much for those two weeks.

Operation scheduled

 

After all the testing  we met with the doctor to discuss the next steps, specifically surgery. 

It has been decided that June 1 is the date to go under the knife -- will remove the near biopsy cells and quite a few lymph nodes on the left arm.  It is a 2 hour operation, so by mid day I should already be home, and then there is 2-3 weeks recovery time.

Test day

Now that the chemo is over the doctors have to figure out several things: did it work, how well it worked and when the operation should be scheduled.

As I see it from the inside, at this point, there are very few precise diagnostical tests available to actually pinpoint the cancer cells. Most of it is a bit of approximation and protocol: this larger, darker mess might be cancer, so let do these MRI, CT scans, or ultrasound to narrow the guessing just a bit..., but the only way to be sure seems to actually remove the cells via biopsy or actual operation and grow them.

So, in this imperfect world, I spent the entire day today, Thursday, being prodded, tested, and imaged to such an extent that could barely talk by the time it was over. From 8 am in the morning till 4:30 in the afternoon, Dana Farber was my "experimental rabbit" trial.

I had:

• numerous vials of blood drawn in preparation for the operation
• Keytruda treatment (I still have at least 4 more to go, every three weeks, I believe)
• an MRI
• a mammogram
• an ultrasound

Last chemo side effects

I was so thrilled that the chemotherapy was finally over and started to make all these plans -- where, what and how. I was completely convinced that by the fifth day, Monday I would be back to life as I remember it.

Not so fast, it turned out. My blood cell count dropped dramatically, so did the appetite and the fatigue just .... covered me. By Tuesday I was still in bed, barely moving and now frantically searching what else to watch on Netflix. Due to overwhelming headaches, I was unable to do anything else. The new series "The Diplomat" took the edge off. I did manage a few hours at a friend's birthday party, but the next day I had to recover from that.

Now my mantra: the chemo is over and I just have to be patient for another week or so. But, to quote "The Princess Bride" -- I hate waiting!

Last chemo !

Today was my LAST chemo!! I AM DONE WITH CHEMO!✅

I survived the total of 16 infusions -- first were 12 TC, and then an additional 4 AC chemotherapies. This probably calls for some sort of celebration, but for now I still have to recover from the side-effects of this last one (so maybe in a week). But it is done! Now life can probably start to slowly get back to normal.

Of course, there is still all the testing to see if the cancer cells were killed off or if there are still some left, the surgery and radiation, but at least I am hoping to recover from the overwhelming fatigue to my regular daily energy levels, which is what I miss the most.

And, of course, the hair!! My head never went completely bald, but the dandelion hair is already starting to get thicker and sturdier....