Friday, March 31, 2023

2nd AC chemo

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.

Thursday, March 30, 2023

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. 


Wednesday, March 29, 2023

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.


Monday, March 27, 2023

New side effect

lungs
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! 

Saturday, March 25, 2023

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.

smileSurprisingly, 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?

Monday, March 20, 2023

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, March 17, 2023

Friday after

housewarming
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

schedule

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.





Wednesday, March 15, 2023

One down, another to go

bench
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.

gallery
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)!

Friday, March 10, 2023

12th chemo

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


Thursday, March 9, 2023

Insurance hell

 

bcbs logo
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!

Friday, March 3, 2023

Adult Echo TTE for Examination prior to chemotherapy

heart
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
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.




Labels

chemotherapy (29) chemo side effects (24) friends (12) radiation (12) cancer (10) fun (10) keytruda (9) food (7) biopsy (6) fatigue (6) insurance (6) port (6) testing (6) hell (5) iv (5) recharge (5) scan (5) test results (5) MRI (4) celebration (4) chemo (4) doctor (4) hair loss (4) hospital (4) mammogram (4) side effects (4) support (4) surgery (4) taxol (4) acupuncture (3) benadryl (3) carboplatin (3) diagnosis (3) operation (3) protocol (3) radiology (3) wig (3) Clark Museum (2) Dana Farber (2) allergic reaction (2) arthritis (2) ct scan (2) cytoxan (2) emotianl state (2) emotional state (2) everyday life (2) family (2) funny (2) genetic testing (2) hair (2) nurse (2) preparation for chemotherapy (2) second opinion (2) treatment (2) trip (2) triple negative (2) tumor (2) turban (2) zofran (2) 1st chemo (1) Faulkner hospital (1) HER2 (1) Lahey (1) MassMoca (1) RSL (1) accupuncture (1) adriamycin (1) adriamycinche (1) birthday (1) blood work (1) blue cross blue shield (1) bone scan (1) brain fog (1) cravings (1) daughter (1) depression (1) diarrhea (1) discovery (1) dressing (1) drugs (1) estrogen receptor (1) halfway (1) hospitals (1) how to tell you have cancer (1) hugs (1) infusion room (1) invasive carcinoma (1) lessons learned (1) low white cells (1) music (1) mutations (1) nausea (1) new year (1) pathology (1) pepcid (1) pink (1) plans (1) pneumonitis (1) progesterone receptor (1) reduction (1) referral (1) respite (1) response (1) results (1) rides (1) samples (1) scheduling (1) self-diagnostic (1) seroma (1) soups (1) statistics (1) suppliments (1) survival (1) tissues (1) tokens (1) travel (1) treatment regiment (1) ultrasound (1)