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.  

2nd AC chemo

The second AC chemotherapy is done! ✅ 

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.

Birthday

I am a big birthday person --- I always celebrate and always over the top , if possible. My motto: we only live once and should savor any excuse for celebration.

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. 

Acupuncture

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.

Our standard one hour sessions turned into 3 hour ones, including long chats while I look like a porcupine.  I got the Japanese acupuncture (micro currents), Chines needles, moxa treatments, cupping and a horn rub with funny smelling (like eucalyptus) cream. 

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.

New side effect

I have had this really dry bronchial cough every evening for several days. I must admit, at first I thought I was just picking up some run-of-the-mill virus because of my low white cell count. But as the cough got worse and worse, I started to realize something was up. Losing my voice to the irritation for a day was just the cherry on top.  A friend of mine, visiting me this week, has an asthma inhaler and that is the only thing that managed to alleviate it. 

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! 

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!

AC chemotherapy cycle

So the faithful day has come and I started the next cycle of chemotherapy, what I call the dinosaur of treatment that has been used since the 1960s if not earlier, vs my first chemotherapy cycle that became standard protocol for triple negative breast cancer only in 2020. 

The second chemo cycle is biweekly AC: Adriamycin (Doxorbicin) and Cytoxan (Cyclophosphamide), a total of 4 times and Keytruda (Pembrolizumab) every three weeks

The horror of the description of the actual infusion was not encouraging --- a burning sensation as it is administered, an awful metal taste, nausea and that is just to name a few....

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.

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)!

12th chemo

Today was my LAST chemo, the 12th, in my first cycle of chemotherapy✅ Done!

Overall, I did pretty well, considering the long, long list of the side effects --- through out my 12 chemo sessions I had the ever present fatigue, some arthritis pain after the first few treatments, headaches and lack of sleep. But that is about it. 

I do have to spend a few days in bed on a regular basis, but, again that is not as bad as it could have been. Netflix to the rescue!

Granted, I did struggle with the 8th chemo and after the 10th chemo session started to understand when people what to just out from the 12th floor window. But two our of twelve sessions is not too bad and overall this chemotherapy cycle was much better than I anticipated. Even the hair loss, started to happen around 6th chemo and not earlier and even now I still have a bit left (so not totally bold)

Ahead is my one week break, and a new and different cycle of chemo -- the dinosaur of all chemotherapies that has been administered since the 1950s -- AC will begin

Insurance hell

 

A separate note about the joys of our health insurance.

We have what is supposed to be one of the best company health insurances, Microsoft’s Blue Cross Blue Shield. And it does pay for most of my treatment, except for the times that it doesn’t.

One of the preferred treatments for my chemotherapy is a hormone that increases white blood cell count. My doctor wanted me to have it, as a preventative measure for my first chemotherapy cycle. My insurance denied it outright and then again on appeal because "it wasn’t medically necessary".

So during my 11th chemo session, my white blood cell count dropped to the point that half my chemotherapy had to be left out. There wasn't enough time to get the shorts... and  I mean, who wouldn't want to spend their time battling bureaucracy and filing complicated appeals when it already been denied? And don't you just love it when the insurance company decides that a treatment that's literally standard protocol for cancer is "not medically necessary"? I mean, what do those pesky doctors and medical researchers know anyway?

In a week, I am starting my second round of a different type of chemotherapy, when this growth hormone is part of the standard procedure; my insurance can’t deny it. But what they can do is deny the brand name version, which gets administered once a week. Instead, they approved the generic version that needs to be injected five times over the week, each time with a nurse who has to come over to perform the injection.

It is hard for me to imagine that it would cost more for the total of 4 shots for the brand drug vs the 20 shots plus 20 nurse visits, but it is what it is and the bureaucrats are adamant! Not to mention that it definitely more painful and more complicated for me. And, in addition to that, I’m the one that has to arrange with the nurse, while I’m weak from my current chemotherapy. Joy!

All in all, it's just wonderful to have health insurance that puts bureaucratic nonsense and penny-pinching ahead of actual patient care and expects you to have the stamina to deal with them during cancer treatments!

Adult Echo TTE for Examination prior to chemotherapy

In preparation to my second chemotherapy cycle with the scaries list of side effect, for example, heart problems or lymph cancer after a year or so -- I was sent to get Echo TTE

Echo TTE ---Transthoracic means on the chest wall. An echocardiogram is an ultrasound test of the heart,  using sound waves to create computerized outlines of the heart and its attached blood vessels.

Takes about 40 minutes and by the end of the day I got a clean bill of health. I wonder if they do it again after the chemo cycle is over to check for the damage...

11th chemo

11th chemo ✅ 

Well, there's good news and bad news. 

The good news is that I survived my 11th chemo session quite easily. I mean, I'm practically back to my normal "chemo days"!  

The bad news is that my pre-chemo test results came back with a very low white cell count, which meant we had to negotiate whether or not to do chemotherapy today at all.

Honestly, I had no idea about the tests and was feeling absolutely fine, but the doctor and I had to make a tough decision. In the end, we decided to go for half chemo - only Taxol, without the Carboplatin. Apparently, the Carboplatin kills white cells, which is why my count was so low.

By skipping it today, hopefully, I would also skip the aftereffects as well. I admit, I was terrified of having a repeat of last week's high fever and emergency room visit hanging over me.

And so far, I am back to my regular "after chemo days" as well -- I was starving, and as I need the high protein diet it seems, George and I went to Flaming Grill afterwards!  Having an appetite tends to indicate that everything is even better than it seems. 

I started to crash in a few hours after we got home, but fatigue is now a familiar friend.

Hell broke loose

Well, when I thought 10th chemo was hard, I didn't know what that really meant. 

I got home on Thursday and even managed to cook something for Max, before feeling fatigued and crawling into bed. And in a few hours all hell broke loose -- first I got chills, then high fever (103 F / 39.5 C), delusions... George started calling my oncologist around 10 pm, when it became apparent that it was not going to go away on its own.

She said there were two possibilities: 

1. I started to get an allergic reaction to Carboplatin. Yes, I know it has been already 9 chemotherapy sessions, but it turns out it is pretty common to get it later in the treatments cycle due to overall accumulation.

2. I have some sort of serious infection, and God forbid, we don't want any organ failures and I should go to the nearest ER.

Just imagining a 30 minute drive, then a long wait at the ER full of sneezing and coughing people, which doubtfully could do much regarding any organ failure -- we decided on easier remedies of lukewarm showers and Ibuprofen. Several hours later, my temperature dropped to 37 C and the crisis was averted.

Friday, in the early hours of the morning, my oncologist called to check-up on me, and explained that this was most likely an allergic reaction and that next Thursday she will be adding back the steroids as premeds to try to deal with this.

It took almost till Sunday for me and here I am, still standing, well, sitting actually, but back to normal now.

It's scary to think that something like this could happen even after the 9th chemotherapy sessions, as I thought that by now I had a pretty good idea of what to expect. But I guess cancer treatment likes to keep us on our toes.

10th chemo

10th chemotherapy done ✅

This is probably what chemo really feels like, and I have been lucky and able to avoid that feeling for at least 8 sessions (one of my chemo's was rough, though not as much as today). 

My usual routine of watching movies or listening to audiobooks for the 4 or so hours didn't save me today... But it is done, and only 2 more to go with this chemo cycle.

4th day after 9th chemo

Well, let me tell you, I was feeling like a superhero after this round of chemo! I mean, don't get me wrong, I was fully prepared to be bedridden for days on end, but to my surprise, the after-effects were not as bad as I thought they would be.

I remember after my 8th chemo session, I was stuck in bed for what felt like an eternity. But this time around, I was up and about in no time! And that is considering that my blood work showed some abnormalities for the first time, with my white and red blood cells dropping. I was starting to think that the cumulative effect of chemo had finally caught up with me. Chicken liver, pomegranate juice and protein to the rescue...

But lo and behold, I bounced back like a champ! Sure, I had some intermittent fatigue during starting Thursday, but that's to be expected. And Sunday was my designated nap and recovery day as usual.

The best part was that I managed to fit in some fun stuff in between my naps! I got a new wig (which, let's be real, made me feel like a whole new person), clown around at DeCordova and even went to a party! I mean, who says you can't party on chemo?

All in all, I'd say this round of chemo was a total win-win. I'm feeling "chemo normal"  and in step with my previous chemo pattern of recovery. If the last three chemotherapies that left revert to this recovery I will be happy.

Wig 2.0

Today I finally got my long haired wig at a fancy Newbury salon. And it feels so much better than the other ones I got back in December, that even though it looked good the "plastic" feel of it was off.

It took several calls to the insurance, two consultations at the salon -- selection and decisions, and an actual hair cut to fit, but now I have it.  

Tests start to drop

Every time I have chemotherapy, they first draw the basic blood panel to see where I am at, so that the doctor could adjust the dosage depending on the results. 

Until my 8th chemo, most of my test results, except for glucose. were within the normal rage. Sometimes at the lower end of the range, but still within it nevertheless. 

However, today, before my 9th chemo blood tests showed that quite a few results are now dropping outside the range..... well at least fatigue could be now medically explained. 

Liver, nuts, kale and bone broth now will be my daily staples, I am afraid.
 

Component	Your Value	Standard Range
WBC	2.23 K/uL	4.00 - 10.00 K/uL
RBC	3.50 M/uL	3.90 - 6.00 M/uL
HGB	10.9 g/dL	11.5 - 16.4 g/dL
HCT	32.1 %	36.0 - 48.0 %
PLT	142 K/uL	150 - 450 K/uL

9th chemo

9th chemo is done ✅. 

My favorite acupuncturist was back,  so it might be the placebo effect, but it was much easier for me his time.

Now, about the cancer-hat. It sounds like you're 

Now I am officially part of the "cancer patient club", where you can spot each other from miles away by wearing the cancer-beanie for the first time.

I'm no fashionista, but wearing a turban to chemo would have been like showing up to a wedding in a clown suit. You just don't do it. So, I opted for a cute little beanie that a friend gave me.

As I walked through the cancer ward, I couldn't help but feel like I was in some sort of twisted club. Everyone was wearing hats or scarves, and there was a sort of unspoken understanding between us all and a sort of camaraderie. It was like we were all part of this secret society that no one wants to be a part of and for a while I pretended that I wasn't. Alas, today I officially joined in by wearing my beanie for the first 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.

8th chemo

Today was my 8th chemotherapy, and, boy, did I feel it.

As I settled into my corner spot for the 5 hour chemotherapy session, my usual acupuncturist was nowhere to be found, the nurse kept running back to stop the IV beeping.... and I felt like a spent battery on a  smartphone as my body ached, and my brain fogged. As if I was dragging my feet through mud and every step was like a battle. I kept thinking, now I have a name for  myself in this state, the "Fatigue Queen". 

At the same time acknowledging that I have only 4 more sessions to go with this chemo cycle. Something to celebrate.

My book club surprised me with a very generous Grubhub gift card, so by the time we crawled home from chemo we had food awaiting us, and that felt like a godsend.

4th day after 7th chemo

Let me tell you how I like Mondays -- most of the side effects wear off and I have the energy to have a normal life and to tackle mundane everyday tasks! 

This time around the side-effects were the familiar fatigue, it seems to linger a little longer each time. There's nothing like a good movie marathon to help with that. Can you imagine life before Netflix? Reading is too tiring and considering that now I have to wear glasses, headache inducing. 

However, not all was just lying in bed all day. In between the bouts of fatigue I even managed to finally organize the medical bills and that is not a small feat. It requires a skill set that most of us do not possess on a good day, let alone during chemo treatments, yet must navigate nonetheless -- those endless bills, deductions, co-payments, refunds.....

Also, now that the reality of oncoming baldness is here, I tried to learn how to tie turbans, and OMG, they make it look so easy in all those YouTube videos! One, two, three and the perfect turban... after 10 minutes, mine, on the other hand, looked crooked, constantly sliding off or to the side, and looked like something straight out of a zombie apocalypse movie.

So, at some point I gave up, got the wig out of the box and gave it a hair cut, as it seems that wearing it at least sometimes will be inevitable. Trying to embrace the chaos and have a little fun with it...

And, those mouthwatering dishes sent by Anya 💓, the cooking angel, were enough to make any foodie drool. It's like a warm hug from the inside out, nourishing not just the body, but the soul.

All together I think, my side-effected weekend was pretty great!

7th chemo

Good morning sunshine! Rise and shine, it's time for my 7th round of chemo-licious adventure. I stumbled out of bed, slathered the lidocaine cream over the port and went back to bed.  I have to apply the cream an hour and a half before the blood draw, and considering that today's appointment was at 7:30.... you get the idea. So, at 6:50 am I threw on my favorite superhero cape (a.k.a my comfy front zipped sweatshirt for easy access to a port, but need to get another one of these) and headed off to conquer cancer.

At the infusion center, I was greeted by my trusty chemo team who were ready to pump me full of goodness. As they hooked me via port, I noticed I was feeling a bit more tired than usual and dizzy, which is new for me, but I refused to let it dampen my spirits. I closed my eyes, took a deep breath and started humming my own theme song. And then I realized what was missing -- yummy food to fuel my body and keep my strength up. George got me a huge salad from Sweetgreens and life started to look much better. Salad is not congee (my super crazy craving lately) but it is much better than the days of bland chips and breakfast bars offered at the Dana Farber center. I'm a salad connoisseur now!

Before I knew it, the infusion was over and I made it home by 2 pm and spent the rest of the day indulging in some well-deserved rest.

I snuggled up in bed with a good book, "The Forty Rules of Love" by Elif Shafak, and allowed my mind to wander into a world of love and adventure, or at least trying to get sucked in.