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.

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.

Another getaway

It is so nice to get away even for a day (my oldest is home from college and can babysit Max). 

We decided to drive out to the Berkshires to visit the MASS MoCA - (Massachusetts Museum of Contemporary Art) and Clark museums to enjoy some culture and art, because who needs romance when you can stare at paintings and sculptures for hours on end! :) Not sure about other married couples, but for us it was exactly what the doctor ordered.

I woke up Saturday morning, figured I was doing ok and off we went at 8 am for a day just for ourselves.

It was a blast of alternative reality with expansive views of snow covered mountains, unexpected and inventive ceramic sculptures at MassMoca and beautiful paintings at the Clark Museum.

Hair now, gone tomorrow

After the 6th chemo, my hair started to fall out.

Well, since I'm clearly on the fast track to baldness, I figured I'd just jump on the balding bandwagon and cut my hair as short as I possibly can, before the eventual head shave. Why not embrace the inevitable, right? Plus, it saves me the trouble of having to do my hair for at least a week.

The three stages of hair:

            

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.

The Care and Feeding of a Cancer Patient: How Love and Food are Keeping Me Alive

Feeling like a well-cared-for plant, with daily check-ins from everyone through text, WhatsApp, and calls.

And a never-ending supply of delicious food, from borscht to baklava to japchae to blini to pierogi and sauerkraut, just to name a few.

One of these days, when cancer is all behind me, I'll have to give a shout-out to EVERYONE who thought about me, called me, checked in on me, and brought me food. That would be a long list...

I mean, I'm not even that great of a plant, I forget to water myself sometimes, but the love and support from everyone is like a little protective circle and it makes a huge difference. Even though I am not depressed or struggling mentally or feeling desperate, like a lot of people with cancer that I know, this circle of support is invaluable.

I keep thinking that I don't deserve it as much, as my hair is still intact, my side effects are all manageable (normally just one day off) and I even get to go to New Year celebrations, being it the new one, the old one or Chinese one...

All I keep thinking that I am just lucky in so many ways and I am grateful for it!!!

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....

Special place in hell

Now, I want to reserve a special place in hell for the person who came up with the brilliant idea of  covering the deep cut over the port incision with 5 inch thick layer of gauze pressed down by a really wide, transparent medical industrial-strength Band-Aid  -- very thin, almost translucent plastic that sticks like glue to your skin.

It turned out that this Band-Aid could only be ripped off with a layer of your sad, battered and bruised epidermis. And you are not allowed to get any water on it for two days to try and ease this!! 

As per Google doctor's picture to the right --- it is part of the protocol by some genius. I bet like many people who don't have kids and like to give advice how to raise them, this genius probably never went under the knife themselves. 

AAAHHHH!

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.

Port procedure

Three weeks into my chemotherapy regimen, after all the holidays, I was finally scheduled for a port procedure -- this time at Dana Farber in Boston. My overall experience at this location wasn't that great, though the actual procedure went well.

Who knew that within several weeks, I would play favorites! I so like my satellite office at Chestnut Hill (parking, easy registration, direct communications), that I am looking forward to going there tomorrow for chemo treatment instead of Boston.

After a flood of communication of where, when, and required preregistration, it turned out that I was supposed to be at a different building, different floor to draw blood, than rush across the street to yet another floor to check in, then brought along some convoluted labyrinth to the prep station. All this confusion at 7 AM in the morning

with nobody to ask is no fun. Then the nightmare of the nurse not being able to get an IV inserted started. She tried 5 times (!), which was excruciating and with each time she did it with more determination and less care, as if by sheer will her random stabbing would amount to anything. It turns out that large hospitals normally have an IV team that I could have requested... In comparison to that IV experience, the actual cut open procedure felt like a holiday! :)

So, back to the port. Until a month ago I didn't even know such thing existed or were highly desired. A port, per Doctor Google's definition: "A vascular access procedure involves placing a thin hollow plastic tube into a vein to permit drawing blood tests, and giving medications or transfusions directly into the bloodstream, over a period of weeks, months or even years."

In layman's terms, during an hour under local sedation in a bright white room (just like in all those hospital dramas), a small round blip was placed under the skin just below my right clavicle bone. I could hear everyone, see the gleaming machines that performed ultrasound and what else, but sorts of from very, very far away.

And now this will be used for all the blood draws and infusions, though I am hoping not tomorrow, as it takes several days to heal...

Wednesday

Wednesday is now my favorite day of the week! My chemotherapy is my every Thursday date for the next 12 weeks as least, so  today I feel 30 again, full of energy and with not even a hint of side effects. 

Tomorrow is also my port operation followed by chemotherapy, but that is tomorrow.

It was a beautiful day, so besides catching up on all the stuff that needs doing, George and I went for lunch to our favorite Masala restaurant. Despite all the recommendation for plain food, I seem to be craving pickled and spicy variety -- Indian was perfect for that.

In the evening, George persuaded me to go to my regular volleyball game (the first of the year) while I still can and have the energy to. He said that if I am tired, he can easily pick me up. But I played through the evening and had loads of fun! 

2023

 

Happy New Year! May it bring peace and health!!! 

We kept up with our traditional celebrations and even managed to pull together half decent table. We got to dress up, watch a traditional New Year movie, burn the last minute wishes over the candle with a sip of champagne...

Not a bad start to a New Year!

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?