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!
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?
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...
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!
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 ✅
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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.
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!
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
Of course doctor Google was our next resort and today we came fully prepared:
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!
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 ✅
As of right now, if there are no interruptions due to health and everything goes according to plan --- this is the approximate schedule for the next year:
December 22nd --- March 9th weekly TCK cycle ---- 12 times
March 16th --- April 27th biweekly AC cycle ---- 4 times
Total of 16 infusions (not counting the Ketruda immunotherapy in between)
May 12th surgery
Four weeks of recovery with physical therapy (unable to lift anything for weeks, I am told)
Than several weeks of radiation and
One year of Ketruda infusions every 6 weeks
I bet most of you don't have such well-defined, concrete plans for the year! :)
Dana Farber recommends doing TCK chemotherapy EVERY week for 12 cycles, then AC chemotherapy every two weeks for 3 cycles, then 3-6 weeks break to recover before surgery. Then 3-4 weeks after surgery another 4-6 weeks of radiation and immunotherapy IV every 6 weeks for a year.
In one sentence, the fun would last for a while, with the surgery sometimes in May/June 2023.
TCK: Taxol, Carboplatin, and Keytruda (Pembrolizumab)
AC: Adriamycin (Doxorbicin) and Cytoxan (Cyclophosphamide) and Keytruda (Pembrolizumab)
Interesting, that Lahey has the same drug cocktail, as least for the first 8 cycles (didn't get much details beyond that), but every 3 weeks with much larger dosage, and worse side effects up front.
And within the first 20 minutes, it became apparent why Dana Farber is the leading cancer center. The doctor was able to explain the entire course of treatment in great detail, with printouts and explanations, rather than the Lahey approach of giving general descriptions of chemo and promises of details later. Lahey didn't even mention radiation as a required step in the treatment
We walked out of the meeting and decided that we are switching to Dana Farber (especially as they were working on squeezing in my first chemotherapy before the holiday bonanza during this week, this coming Thursday, 12/22).
After Max's friend's birthday party at XtremeCraze and fencing tournament (Max got 1st place!!!!), we started cleaning up our bedroom in preparation for chemotherapy patient with the help of my friend Alya.
So out went all the plants, numerous jewelry boxes, cards/photos and all the other useful stuff that is impossible to live without --- to clear all the surfaces for easy cleaning for the next 6 months. Everything, but the basics are off into a box. Oh how I miss all of it already....
Though who knows, in 6 months I might just throw most of it away.
The long dreary basement hallway of 2 West, Lahey Clinic -- I seem to come here every other day...
My insurance finally approved the CT scan (a week ago it had issued a denial, as stage 3 breast cancer is not enough of a reason for the scan to see if there are any other metastases). Called the clinic and the Lahey technician was able to squeeze me in at the last minute at the end of the week on Saturday 12/17 at 8:45 in the morning. Kudos for that.
The familiar basement 2 west wing lab. Had to remove all metal (zippers, wires), get an iodine IV (to add to the radioactive solution from last time), and I am off on the girdle into the metal donut.
The scan itself was quite short, only 20 minutes, and not at all claustrophobia inducing, unlike the MMR or even the bone scan.
I even managed to make it back in time for Max's clarinet school recital at 10:30!
