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? 

WIG

 

WIG. I will need one soon, though right now I still have my hair intact. 

Welcome to the American health insurance system. Blue Cross Blue Shield, it seems, provides a patient with a wig reimbursement voucher per calendar year, based on the doctors prescription. It took a while to figure this one out.

First, we were told that the wigs are not covered.

Secondly, were told, that we need to get the specific doctor's prescription, though I am already in the chemo cycle.

Thirdly, after several interactions with different customer care specialists we found out the actual amount that is covered ($500) only after reminding the representative regarding MA law, that requires wig coverage for cancer patients in MA of at least $350. 

So, two days before the year 2022 was over, we got the approval for the WIG.

Turns out, it is not as simple as go to the shop, pick one, and be done with it.

EVERY place requires an appointment for at least an hour, and even at the Dana Farber wig shop you can't just come in off the street and they were booked solid for the next few weeks. There went my $500 wig out the window...

A friend of ours recommended this place, Ara's Salon and Hair Studio, down in Wareham, an hour's drive from our house. Roseanne was really accommodating and met with us on Saturday morning at 8:45 am, the last day of 2022, on December 31 to pick the wig.

I am thinking how lucky I am to have the aptitude and the energy to deal with the insurance system right now, but it is an unfriendly force, for sure. How do people hugging the toilet bowl after chemo treatments deal with the endless medical expense lists, double billings, or even simple wig purchases?

Now, I just need to explain why I have all these wig pictures, while I still run around with a head full of hair. It's the system, baby!

2nd Chemo

At 7:10 am this morning it was already a familiar routine: 20 min drive, check in, IV, blood work, results and several hours in the infusion center. 

Today, to somewhat reduce George's anxiety, we decided that he would accompany me. This way George could see the process first hand, ask questions and hold my hand and feel useful. Gwen babysat Max and then went to work. 

For the 2nd chemo, my oncologist switched Benadryl to half the dose and in oral form instead of infusion, and lowered steroids a bit, though the rest of the premeds were kept intact. 

After all the premeds, I only had Taxol and Carboplatin for today's chemo, without the immunotherapy. Infusion wasn't as easy with pins and needles here and there, but absolutely manageable. Several hours later we were home around 2 pm. 

And, so far, no close acquaintance with the toilet, loss of appetite, or any other wonderful side effect, just fatigue (which is to be expected). 2 hour nap cured that!

As unique as I am, my side effects tend to show up four days later vs the next day. So we'll see what happens during New Year's celebration on Sunday.

Second chemo ✅

Funny: my bathroom shenanigans

While in our beautiful alternative universe of Providence, RI , we went to some famous local Chinese buffet restaurant for a feast. My motto lately -- eat as much as I can, because after the next chemo I might not be able to.

As I am so new to these cancer treatments and side effects, of course I was in my regular easy traveling garb -- jeans and sweatshirt -- and thought nothing of it. 

At some point I needed to use the bathroom and boy, was I in for a rude awakening. Because of the arthritis pains, all of a sudden buttons and zippers felt like they required the dexterity of a contortionist. With my inability to bend my fingers, it turned out I couldn't unbutton or even unzip my pants, nor dial the phone to quietly call George for help.  

So here was the scene: I opened the door and semi-quietly, if there is such a term, called for George. Then we spent a long time locked in the bathroom with some noises and discussion on how to get me first out of, and then back into, my pants. Alas, probably 10 minutes later when we left the bathroom most of the restaurant stuff was along the wall whispering in Chinese... 

We decided not to disabuse them of whatever funny notions they fantasized about regarding our bathroom escapades. Who knows, maybe we were the talk of the town now, so I'll just chalk it up as a win for the day. But note to self: next time, wear pants that you can actually take off by yourself.

To get away

Now that I feel the side effects somewhat acutely, and they are not going to get any lighter (on the contrary chemo is cumulative) I offered to run away for two days to RI with George before my next chemo. I couldn't use my arms much because of the arthritic pain, but I reasoned with George that I can just keep them in my pockets and he can do the rest... and it is much better to walk around and take my mind off it vs sitting at home.

Thank God, Gwen is back from college on a winter break and is babysitting Max for two days. 

It is an hour and a half ride, but feels like a different world, away from everything. And it is nice to relax and enjoy this alternative reality, walking down Benefit St in Providence or the Breakers mansion in Newport. 

It was a really needed respite for George, who tends to lock up all his worries, to get away from it all and recharge. 

And two beautiful days with my husband were WONDERFUL!

4th day after chemo

Sunday. It has been 4 days since my first chemo --- and the first day or two I barely had
any side effects, except the expected fatigue and inability to fall asleep at night. 

Sunday morning I woke up unable to bend my fingers, feeling like the Edward Scissorhands character. Even after an hour wearing heater gloves to ease it a bit, the horrible arthritic inflammation was here to stay. Suddenly you realize how little you can do with the unbending fingers.

Beyond that, it was the day as usual -- even managed to finish the rabbit papier-mâché for the upcoming year of the rabbit (mainly drawing eyes) and had dinner and a movie at a friend's house!

Lessons learned 1st chemo

DF explained all the drugs and side effects in great detail with chemo steps and schedule print-out: check-in, pre-chemo labs, conference with oncologist and chemo at the infusion

station. The rest of it was not that much -- just show up. The doctor made a few specific recommendations like get the ice mittens and booties from Amazon to ward off the numbing side effects and drink plenty of fluids, but that was about it.

Of course doctor Google was our next resort and today we came fully prepared:

• My daughter was my buddy to fawn over me and watch for unforeseen reactions to medications. (Fortunately I had none.)
• Turned out that we should have put the booties/mittens into the freezer the night before, so they were useless for today. Good thing, I didn't have those numbing sensations yet.
• Brought in my laptop to watch movies and downloaded tons of audiobooks (with the nurse running around and taking wasn't able to do much, but it will be useful next time).
• DF provides water and snacks, but we brought lemon/ginger water from home and nuts and pomegranate which was so much better than the sad looking mini egg salad in a plastic cup. I nibbled on a few nuts, but wasn't ravenous (often because the first infusion has a double dose of steroids, people are super hungry).
• We carried everything around in two backpacks -- the next time a small suitcase on wheels would be the right answer.
• My favorite red cashmere shawl made things not only warm and cozy, but also festive and matched some of the crazy xmas vests the nurses were wearing. :)

While I was in chemo, my friend Tamara dropped off bone soup -- returning home and crawling into bed -- it was a godsend! Sipping on this warm broth was so soothing and calming (no nausea yet). Having friends' support circle is INVALUABLE!

1st Chemo

Bright and early, after eating a few spoons of oatmeal and swallowing several steroid tablets, my daughter and I arrived at DF at 7:40 AM. After the mandatory Covid check-in on the 3rd floor, I headed straight to the labs to get the IV in and the basic pre-chemo blood draws.

The cubby-station felt like a luxury hotel -- light, aery, wall of windows. The lab technician wrapped a warm towel(!) over my hand, and then used some 007 spy looking stick to scan for veins, which glowed bright lime green. Surprisingly, the IV goes in the middle of the hand, and not in the regular vein.

After all the blood was sucked off, we met with my oncologist doctor and went over when/what/how. Long list of side effects and the schedule for the next several months.

We asked about medicinal weed candy to ease chemo aftereffects but were told to wait until a few days after chemo infusion...so no fun with weed for a while.

By 9:30 were already at the infusion center -- again, bright and cozy with a huge window; in the corner, a nice leather lazy-boy type chair that folds out as a bed with built-in heat, large TV screen and a first, lady with a snack cart stopped by, then acupuncturist.  

The nurse in a bright green garb was running around like a crazy chicken without a head because Dana Farber changed the infusion protocol and she had only seen how to do it via a printout. She was sweet and kind and talkative, and honestly, I got more tired from her talking, running around and asking different nurses how to do the infusion order, than the actual procedure. I guess this is a good thing :).

I got several pre-chemo infusions -- I remembered the one that stung for 15 minutes was Benadryl. Then the Taxol started... First chemo is usually done with lot of pre-drugs for allergies, nausea, etc. and at about two to three times the speed of infusion. 

Besides fatigue, I felt perfectly ok, so we didn't need to take breaks in between different drugs.

At 2:20 we were already in the parking lot, and home at 3 pm

First chemo ✅