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.

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.  

Update, week later

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?

4th day

It seems that even with this new AC chemotherapy, my side-effects follow a similar pattern as before: really sick and fatigued the day of chemo Thursday evening, fine next day Friday, and completely out of it during the weekend. 

I had a few hours out of bed during the weekend: a half hour walk on Saturday, and a back yard bbq with friends on Sunday; but mostly super fatigued, nauseated.

Interesting discovery: crackers, watermelon and salmon soup seemed to do the trick for me, who would have thought of this combination ? 

Friday after

Love Fridays, the day after chemo!

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!

One down, another to go

My recovery after the last 12th chemo was relatively easy and familiar to the bone now, so, of course as soon as the fatigue subsided, I was off enjoying Boston with friends and family. 

Love, Love Boston... the weather cooperated and this week happened to be restaurant week --- even better.

As my white and red cells counts are too low for the next week's new chemotherapy, and the insurance failed to deliver a Granix shot on time -- the best prescription that I know to get these cells up is fun, friends, sun, meat and cod liver sandwiches (the last one beats raw beet juice any time)!

Sunday

Today was the first Sunday that was surprisingly almost normal. Granted, I had to take a few naps here and there, but who doesn't, right? By noon, I was up and ready to conquer the world.

First, a friend of mine came over to visit from afar and we walked around the neighborhood for almost an hour and a half (the weather this February is very mild). For me it was basically like a Boston Marathon.

Secondly, to top it all off, I went to a friend's birthday party at a restaurant. Talk about living life on the edge!

Dress up time --- it was a risk, wearing a turban out in public for the first time -- but you know what they say, "go big or go home."  After tying the "formal" (as I have three, each has a designation) turban with George's expert help, we drove to a restaurant. The turban outing was a success, if I do say so myself!

Lessons learned, watch for the low car ceiling --- unexpectedly, need to account for additional height :).

Chemo follow-up

I am thinking that now I should consolidate my after chemo side-effects follow up post, as it no longer looks like that most of the side effects kick in on the 4th day for me. 

Right now it appears that chemo 8! was the turning/breaking point when the cumulative effect finally kicked in and threw a wrench into my orderly life... After all, until this Thursday my side effects from chemotherapy would pretty consistently fully arrive on the fourth day, and I even started to plan around these days. However, after the 8th chemo I dragged myself home, crawled into bed, and pretty much stayed there for the next three days until Saturday evening. 

Despite my best efforts to shake off the fatigue and get some much-needed rest, it seemed like no amount of sleep was enough. I felt like I was dragging myself through molasses, unable to shake the ever-present feeling of exhaustion that had taken hold of me. And then, to add insult to injury, I lost my appetite on Friday – the first time after chemo that I had actually lost my desire to eat. Sure, I was grateful that I wasn't experiencing any nausea, but losing my appetite was a new and not-so-pleasant sensation.  

But, friends to the rescue -- on Saturday evening a friend of mine came over to make poppy seed cakes and pancakes for my son. And despite the fact that I could barely move, I found the energy to crawl out of bed and join in on the fun. It was a welcome distraction from my current state, and before I knew it, we were trying to learn how to make successful turbans. 

As we laughed and tried different options, I couldn't help but feel grateful for the moment of joy and distraction. Despite the physical challenges, moments like these remind me to embrace the lighter side of life.

After watching countless YouTube videos, we came to the realization that most of them were probably deep fakes and that the only way to actually get a turban to stay on my head was through a coordinated effort between two people. My husband tied one end while I held the other, and with a little teamwork, we finally achieved turban success.

And who would have thought that I would be learning the art of turban tying? Life is full of surprises, and I never know what's going to happen next. Who knows, maybe I'll become a turban expert by the end of it all.

The Care and Feeding of a Cancer Patient: How Love and Food are Keeping Me Alive

Feeling like a well-cared-for plant, with daily check-ins from everyone through text, WhatsApp, and calls.

And a never-ending supply of delicious food, from borscht to baklava to japchae to blini to pierogi and sauerkraut, just to name a few.

One of these days, when cancer is all behind me, I'll have to give a shout-out to EVERYONE who thought about me, called me, checked in on me, and brought me food. That would be a long list...

I mean, I'm not even that great of a plant, I forget to water myself sometimes, but the love and support from everyone is like a little protective circle and it makes a huge difference. Even though I am not depressed or struggling mentally or feeling desperate, like a lot of people with cancer that I know, this circle of support is invaluable.

I keep thinking that I don't deserve it as much, as my hair is still intact, my side effects are all manageable (normally just one day off) and I even get to go to New Year celebrations, being it the new one, the old one or Chinese one...

All I keep thinking that I am just lucky in so many ways and I am grateful for it!!!

Cleaning

Today was a very busy last weekend before the troops are brought onto the field of cancer battle (chemotherapy).

After Max's friend's birthday party at XtremeCraze and fencing tournament (Max got 1st place!!!!), we started cleaning up our bedroom in preparation for chemotherapy patient with the help of my friend Alya. 

So out went all the plants, numerous jewelry boxes, cards/photos and all the other useful stuff that is impossible to live without --- to clear all the surfaces for easy cleaning for the next 6 months. Everything, but the basics are off into a box. Oh how I miss all of it already....

Though who knows, in 6 months I might just throw most of it away.

Friends embrace

I am so lucky to have friends (and I have yet to share my diagnosis with the majority) that just embraced and supported me from the get go with little fuss. 

Soups and salads, sacred food from a temple, boxes of persimmons and pomelos and pomegranates, rides to/from hospitals or dropping Max off here or there... 

And I am still fully functioning, for now just spending endless hours in and out of the hospital with numerous tests and on the phone with insurance.

No outward visible signs of any trouble in paradise, but the circle of embrace really invaluable.

Mammogram 10/28

Thank God for friends! 

Alya drove me to the Lahey Clinic in Burlington and sat with me in the waiting room to get my mammogram. 

I mentioned the lump to the technician and she wanted to do a diagnostic mammogram, but couldn't do the same day, nor would it be covered by insurance, and again clinic required another doctor's order. So we proceeded with the regular one. 

It was uncomfortable, but manageable, and then they said that results would be soon and I would need to come in for a follow up ultrasound one anyway.

To lift the mood, Alya and I went to the nearby Fogo De Chao bar, which is this beautiful restaurant and a cozy bar to drink to a better outcome.