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.
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.
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.
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.
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.
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?
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.
The morning blood work was nothing out of the ordinary, and my white cells were back to normal and the red cells a bit on a lower side, but chemo was still a go. However, the doctor said that because they still suspect that I might have pneumonitis because of Keytruda, I should go and get a CT scan to completely rule it out. So before the infusion I had to get this scan.
Maybe because of this additional scan stress, this chemo was much harder going in, as well as the actual infusion: a metal taste, a burning sensation and all I was able to do is try to sleep, no watching any movie.
Two down, two more to go. Becoming like a mantra now...
On the plus side, before chemo we walked around the building with a friend of ours Artem who is an architect and currently building another cancer hospital in F L and to hear what he actual looks for was quite interesting.
Of course, I had these grand plans to spend my birthday in Iceland this year to see the aurora borealis, or more commonly known as Northern Lights, which is best viewed end of March as the weather tends to cooperate. Well, I guess this will now be my next year plan, so this year we had to do what we had.
I must say, I'm feeling pretty lucky and grateful to have such amazing friends. They really know how to make a birthday girl feel special, even if I had to put my Iceland dreams on hold.
I had two friends fly in for the celebration -- one all the way from Tbilisi, the other from San Francisco. And they cooked up a feast out of this world for more than 20 people! And the decorations! My other friends really went all out with those strings of balloons, cakes and the birthday crown. I felt like a queen for the day. It was just the kind of over-the-top celebration I love.
I got a lovely and unexpected slide show down the memory lane and serval musical numbers about Baba Yaga (funny witches) performed by my friends!!! I mean, who needs to see Northern Lights when you have a group of friends singing songs about witches, right?
Sure, the morning started with an x-ray, but once I got home it was a blast. I feel so lucky to have such wonderful people in my life. Overall, it was an incredible day and I feel so grateful for the people in my life.
I went weekly to an acupuncturist in November and December -- first because of knee pain and later as a back up support for cancer. Doctor Wu, once she learned that I had cancer, explained that, of course, acupuncture can't treat cancer, it can help with over all immunity and elevation of some of the side effects.
Once my first chemotherapy cycle finished, I decided to renew my acupuncture visits to prep for the vicious AC chemo. However, my doctor switched practices and now is in Sudbury (30 min drive) and, of course fully booked. So I called to schedule, and again here was my luck with people. Once she hear is was me, she squeezed me in the day before my second chemo.
So, I though if I get a hour, I will be lucky.
I got my regular porcupine treatment of three hours. When I left, it felt as if I grown wing, not only from the treatments, but from all the genuine care way beyond what was expected.
I called my doctor to get that inhaler by prescription so that I could actually sleep at night. But nothing is easy.
It turns out that bronchial cough is a known side effect of the immune treatment Keytruda, and even though I already had 6+ treatments, like all chemo it has a cumulative effect and it seems that now it finally kicked in.
"Immune checkpoint inhibitors may cause pneumonitis, which is inflammation of the lungs that can cause a cough or trouble breathing. Pneumonitis is uncommon but may be serious." per doctor Google.
Leave it to me to get the uncommon side effect. Just my luck, right?
My doctor requested that I go the hospital for an emergency lung scan to see if I had gotten any inflammation before prescribing the regular steroid inhaler.
Nothing like a little medical drama to spice up my birthday week!
Well, what can I say... this AC chemotherapy is different from the previous cycle in a few ways.
Mainly, the ongoing fatigue, overall weakness doesn't really last just a few days, but is an ongoing struggle for a week now. If before, by Monday I was back to normal and was able to function well for at least three days before the next treatment, now every day I have to lie down for a few hours, and for several days that is ALL I did.
Surprisingly, the hardest day was exactly a week later. AC chemo requires two weeks of recovery time, so all of a sudden, Thursday rolls in and it was the first time in three and a half months that I didn't need to go to Dana Farber for an infusion. Maybe it is psychosomatic, but from Wednesday to Thursday the night was hell on wheels -- nausea, sweats, insomnia and incredible weakness --- lasted all night long into all day Thursday.
As Friday rolled in, I expected more of the same, but I woke up as if nothing happened and it was an easy day. Granted I had two friends flying into Boston to visit me and I suspect that also made a difference.
I mean, who knew that all it takes to beat chemo-induced fatigue is a couple of good friends and some quality time together?
You wake up a bit discombobulated, but there is a full day ahead and often the morning is not as bad as one anticipates.
Today, I decided not to eat anything to relieve the new ongoing feeling of nausea that now follows me around with this new AC chemo cycle.
However, a friend brought me salmon soup at noon, and it made all the difference in the world. It single handedly put away any nausea and as if I got a new lease on life and was not only able to function normally, I even managed to go to a housewarming party and a birthday party Friday evening!
The second chemo cycle is biweekly AC: Adriamycin (Doxorbicin) and Cytoxan (Cyclophosphamide), a total of 4 times and Keytruda (Pembrolizumab) every three weeks
But, as a happy contrarian, I am glad to report that not only I survived it, I avoided most of the above.
The 1st chemo in new cycle ✅
I got home and in addition to my regular fatigue I was nauseated and sleepy, so no movies to save me ☹, but unable to sleep. And that is exhausting.
Love, Love Boston... the weather cooperated and this week happened to be restaurant week --- even better.
