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!