Radiation recovery

As usual, I keep fooling myself into believing I'll dodge those grievous side-effects that I was warned about, just like I lucked out with my two rounds of chemo. But nope, radiation decided to break the rules.

For the first 15 sessions, I was practically breezing through – barely any changes. However, after crossing that checkpoint, it's like the side effects started to accelerate in a geometric progression. 

And now, even a whole 10 days after ringing the final treatment bell, my left side is casually shedding skin layers like an aging python. Pass the daily compresses, please!

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.

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.

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.

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.

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.

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.

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.

6th chemo

 Another Thursday, another chemo.  Arrive at 7:50 am at, oh, so familiar Dana Farber center ( the third floor check in, the blood work station, the south infusion pods) and out by 12. There is no Ketruda immune treatment today, so it is a much shorter infusion.

Now that 6th chemotherapy is done ✅, I am officially half way through my first type of chemotherapy.

(There will be 12 sessions all together for this one.)

I am slowly starting to feel the cumulative effects of the chemo, but it is still manageable.

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.

5th chemo

5th chemotherapy done ✅

This time, no steroid drugs or allergy meds needed (Benadryl), just a little Zofran and Pepcid to get the job done. 

This is how we roll now and going forward! Now my premeds will not change.

Oh, and I managed to convince the acupuncturist that I will not digest the "ear seeds" she sticks on as treatment, unlike, I guess the majority of cancer paitients,...so she agreed to let me keep them on for the prescribed 5 days vs 1 hour. Will see if that makes any difference.

Chemo went off without a hitch --- just stung a bit, a fun flick, and some H2O... and was home in 5 hours. 

Any movie recommendations? I am running out of things to watch :)

4th day after chemo

My side effect routine is now like clockwork: the day I have chemotherapy, within an hour fatigue takes over for a couple of hours. Sometime the next day for an hour here or there... but the full blown side effect tide normally kicks in on Sunday, the fourth day after chemo.

This Sunday I woke up with joint pain, headache and general fatigue. But knowing the problem is half the battle -- so a day in bed with Turkish serial dramas, warm tea, and cats within reach did the trick.

Today, Monday, I am off to a regular day. As it is a holiday, no work or school, we decided to enjoy the first real snow this year at the DeCordova Sculpture Park! 

Good news!

Imagine some square-shouldered superhero with Chemo splashed across the chest:

Looks like that tumor didn't stand a chance against chemotherapy! It's shrinking faster than a snowman in a heat wave.  

(we are, after all, in the global warming era)

Today, halfway through my first chemotherapy treatment cycle of 8, I met with my oncologist. After 4 weekly chemo sessions, the tumor in the breast is noticeably smaller, by half it seems, and the lymphatic nodes are smaller to touch as well! 

So, it is working!!!!!

4th chemo

4th chemotherapy done ✅

Today I finished half of the first chemotherapy (8 cycles), only 4 more to go with this one.

There are several firsts today:

1. First time I am using my newly inserted port, from last Thursday. As per instructions, slathered the incision with Lidocaine cream an hour and half before, so was almost painless! 

2. Wore a zipped up hoody, borrowed from Gwen at the last minute, in order to comfortably use the port vs my favorite cotton easy pull-on tops. Was a good decision, otherwise I would have had to walk around half naked once they draw blood for tests and attaché the needle to the port.

3. No steroids this time at all (!),  only 1/4 of Benadryl, because they didn't want to stop two medications at the same time, and 1/2 of Zofran. we are getting there -- to remove any additional poison that is not absolutely necessary from my chemotherapy cocktail.

4. Had an acupuncture treatment (ear seeds) while doing the chemo infusion.

4th day after chemo #3

Well, it has been now four days after my 3rd chemo and this time everything changed. 

Before, I somehow managed to avoid most of the long list of the side effects, getting the obscure arthritic pains as the main thing in addition to expected fatigue. And most of the side
effects kicked in on third or fourth days after the infusion.

This time around, there wasn't several days before the side effects started to appear. 

Saturday, the next day after my chemo I started to feel wheezy, and more fatigued than usual. By Sunday I joined the ranks of the regular folks --- mild diarrhea  :(  

I am inching closer to the famous "hugging the toilet state", but not all the way there yet -- no nausea or loss of appetite. Who knows, I am still hoping to "magically avoid" the inevitable....

3rd chemo

My 3rd chemo is done!✅ 

Most of the premeds are gone, so I felt a bit of a sting for the first time. My chemo was today, on Friday instead of my regular Thursday, because of the port procedure yesterday and we couldn't just skip it -- so Friday it was.

I actually asked to use a regular IV, because the port area is still very, very sore and painful and covered in 5 inch thick gauze that is impossible to take off.

Thankfully, the Dana Faber Center accommodated my request so the overall chemotherapy was a bit more uncomfortable, but easily bearable as I didn't have to deal with the raw wound of the port.

4th day after chemo #2

So the second chemo is over and done with, come and gone. It's really starting to feel like I am in the middle of a game and don't understand all the rules and penalties yet. I am way ahead at the finish line of the game without much effort. 

I barely have any side effects so far after the second chemo, beyond the expected fatigue. Now several days in, I am starting to get the tingling and arthritic pains a bit, but nothing dire. And this is now a familiar territory, so easily dealt with. 

The long, long list of side effects -- loss of appetite, vomiting, diarrhea, headaches, fever, coughs, etc. -- have all passed me by so far. I keep waiting for something unexpected to round the corner and slam me. That's the scary part.

I am starting to worry that I don't worry enough or that I am not getting whatever other cancer patients suffer through: no depression, sadness, or feelings of loss, that so many talk about.

I just go on with daily life, like the main course at a great restaurant, with chemo as an obligatory side dish.

Maybe the 3rd chemo, this time with minimal premeds, will rear its real ugly head?