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....

Weekend

This is my last weekend before my last chemo. I survived the week of side-effects and school vacation (thanks to friends who took Max places) and now that I am semi-functional we even had friends over to celebrate one of them getting American citizenship.

And to nurture the soul, I even went to Evgeny Kissin's piano concert at Symphony Hall. It was obsoletely wonderful!

6th day, 3rd chemo

Instead of my regular 4 day recovery, I have spent 6 days pretty much in bed, eating only cucumbers and melons.  At some point I couldn't even talk on the phone with my parents, who called to check in.

By Wednesday I crawled out of bed to go to my acupuncture appointment, and as soon as she saw me, she said that the whites of my eyes were the wrong tint and I should be barely functioning. She said I have to eat proteins, meat or beans, otherwise I will not survive.

After my now regular three and a half hour session, I got home smelling of tiger balm and forced myself to eat eggs and a can of beans....

Not sure if it was just getting out of bed, or the long acupuncture session, or the fateful can of beans that evening, but I had, for the first time during this AC chemo, an almost regular night and woke up functioning normally the next day, Again, the first in this cycle.

So, not sure what did the trick, but I'll take it.

3rd AC chemo

This chemo was hard. I was sick the night before so could barely muster the strength to get to the hospital. And, of course, this was the day when everything had to go wrong...

First, we ended up waiting extra time to every appointment: labs, doctor, infusion and time was as slow as molasses.

Second, there is a very distracted, overwhelmed nurse. We had got her during my very first infusion when told us she didn't know what to do, and even this time she was as disorganized as ever and everything took too long. But the icing on the cake was when we finally left the hospital and she called back in half an hour to let us know that she forgot to attach the Neulasta patch and we have to go back.

Thirdly, when we finally got back to the hospital, she hurriedly attached the shot capsule in a small hidden room to the side of my arm in a way that for the next day I couldn't use the arm much as the capsule stuck out at odd angle.

After living through, now, 15 chemo sessions I can say --- I hate chemo with a vengeance. And I have been dealt the "easy hand" --- I managed to avoid a lot of side effects that others  suffer though.... and it is still really tough. The cumulative effect just slowly swallows you whole like a whale. The overwhelming fatigue, that no sleep can cure, the coughing, sensitivity to smells, lack of sleep, getting tired of walking for more than 20 minutes....

I have one more chemo left, the last one and it is like the tantalizing new horizon of my normal, regular life back, just dangling there almost at a hand reach. 

 

Food for thought

Some people go to retreats or some exotic beach on Bali for self-discovery and appreciation. I took an easier and faster discovery route -- cancer. 

You discover that your body is an amazing marvel with superhuman abilities to withstand a blood-curling and frightening list of poisonous treatments that in trying to kill cancer are also predictably killing you in the process. You also learn to look differently at limitations, accepting them as part of life and adjusting accordingly. When the steroids kick in, most of Friday, I am like an energizer bunny running around doing everything at once, before deflating in the evening. While on some weekends, Netflix or some foreign movies are my only friends when I can barely get out of bed. And in between these ups and downs -- I continue to enjoy life.

Another discovery are people. I feel incredibly blessed, surrounded by people who check in with me daily or weekly from all corners of the world -- sending me funny audio books to shorten my time while I am in chemo, or a flood of messages on the day before chemo to check-in, or my friends just casually dropping food every Friday, or my neighbor bringing brisket to my door. And if I don't post updates here within a day or two of the treatment, my phone is burning up: "Are you ok?" "How is everything?" Some of my friends flew across the country or even half-the way around the globe not only to come and celebrate my birthday, but to cook, cook and clean and organize and prepare just to make it so special for me - and it was wonderful! Due to all of this I can appreciate today, and not worry about tomorrow, and gently drown in all this love and care.

People I enjoyed playing volleyball with, or reading books with in a book club, or who are just too far away to meet, are reaching out and sending me unexpected food delivery gift cards or fresh flowers to my doorstep. It is incredibly touching, very real, that in their day-to-day busy lives they not only can spare a thought about how sick I might be feeling, but also find the precious time to reach out in so many different ways. To say that it makes a HUGE difference, is to say nothing. There are no words to describe how it is -- it gives me the strength to deal with this cancer beast.

I also discovered that some people that I spent half my life celebrating holidays and kids' milestones with, that were the first few to know about my cancer when we didn't even know how to deal with the diagnosis or how to tell people, just disappeared from my life completely with a dismissive "in this day and age they know how to treat cancer well; if you need something, call." And that is it, only one or two text exchanges in the several months since the diagnosis with lengthy explanations how busy they are with their lives to even text. And it leaves a hole within me, not because I expected them to bring food, or constant visits or driving with me to pick up a wig.... it just that I expected to matter to them, the same way they mattered to me all these years sitting at my kitchen table when life was easy. I expected that knowing me all these years, they would reach out without asking, and support without scheduling conflicts as I often don't have the energy to think, let alone to ask and schedule. Cancer makes relationships so much more raw and real, like a litmus test.

And then I wake up in the morning, look at my handmade dolls (the protector) that were such a precious gift, get a morning "how are you" call from a friend, or a "I know you couldn't eat much beyond honeydew melon yesterday, so I will swing by and bring you light soup to make it easy for you..." and again, I feel enveloped in those guardian angel hugs and think that I only have another two chemos and that with this support it will be a breeze.

I discovered how eternally grateful I am for all these unsolicited thoughts, texts, calls, food, gifts, care, encouragement and how incredibly lucky (if often undeserving) I am.

Off week Thursdays

Thursdays are my marked days. 

The AC chemotherapy to me feels more draining (I have one every other Thursday, then have the next two weeks off, while the previous one I had two difficult days and then life went back to normal), toxic and weak.

In the latest cycle of AC chemotherapy, every Thursday, I either have the exhaustive chemo infusion or not. But on the "not days" it seems my body can't easily accept that it is an easy day. My body, like an unruly teenager, rebels!!!

So off week Thursdays are the worst. So far, every Wednesday night to Thursday on the off weeks with no treatment I am the sickest: sometimes fever, insomnia, overwhelming nausea, and throwing up half the night, or a debilitating cough; and all day in bed barely able to move.

But by the end of the day Thursday, after overwhelming sickness and weakness, I feel like life is back to normal ---- how can I not believe in psychosomatic symptoms after this? 

4th day, 2nd chemo

Four days later my cough persists, though now I have a steroid inhaler; as well as the overwhelming fatigue. However, now the pattern emerges --- the next day after chemo, probably due to steroids, I tend to have a super normal day, run around like crazy and accomplish a lot. The next three days are tired, fatigued and I try to schedule activities around two-three hours in bed.

And the overall level of body weakness is much more pronounced with AC chemo. For example, a walk to the library which normally takes 20 minutes --- took more than an hour, followed by two hours in bed to recover. 

I have had a busy week: birthday celebrations, friends visiting and a second chemo treatment.