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.

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....

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. 

 

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.  

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.

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

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.

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.

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.

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!

4th day after 6th chemo

Now that I have reached the half-way mark of the first chemotherapy cycle, it seems that I got used to handling the side-effects better. 

I sleep when I need to, eat what I crave and in between have fun with whatever turns out to be an activity for the evening...

I have had an ongoing craving for congee with all the bits added in, but, alas, around Boston, there is none to be found. :( So going for any other Asian soups -- Tom Kha, for example. 

This week, beyond the regular fatigue and noticeably losing my hair, I was able to easily handle a day trip to the Berkshires to visit the MassMoCA and Clark museums with George and have a leisurely day on Sunday with a few naps here and there.

4th day after 5th chemo

This time around for chemotherapy side-effects I got my regular fatigue, a bit of arthritic pain and something new --- constant headaches for several days. Dull, throbbing headaches. Again, all of these are easily managed. 

Also, after talking with my oncologist, I started taking Magnesium (which eases arthritis) and Calcium with vitamin D supplements daily. So maybe these made everything a bit better or maybe it's just that by now I already sort of know how to deal with most of these side-effects.

I even managed to pre-celebrate Chinese New Year with friends on Friday, and then again at our place on Sunday!!

On the other hand, it turns out that I did get a bit of a brain fog (chemo related, as I try to reassure myself) .

Turns out I miscalculated the total chemotherapy treatments for the first cycle -- there are 12 vs 8 as I originally counted and I still have another 7 to go.

So it turns out my next one, this Thursday, will be the coveted half-way point.... But I did get lots of positive vibes last week, thinking that I already reached it 😀 which in itself is a plus.