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 ✅

Chemo calendar

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! :)

Treatment regiment

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.

Dana Farber Cancer, second opinion 12/19

A week after my appointment at Lahey regarding our options and treatment roadmap, George and I were sitting in a brightly lit waiting area of Dana Farber Cancer Center meeting with another team for a second opinion appointment.

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).   

Cleaning

Today was a very busy last weekend before the troops are brought onto the field of cancer battle (chemotherapy).

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.

Long hallway

The long dreary basement hallway of 2 West, Lahey Clinic  -- I seem to come here every other day...

CT scan 12/17

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!

Haircut

It looks like chemotherapy is the first order of business for the next few months and it is coming up fast, next Friday 12/23. 

I was told that the hair is the first to go, so decided to chop off most of mine in the beginning, so that the loss would be more gradual (who know, maybe I will be lucky and most of the mane will stay?)

I wanted it to be even shorter, but the hairdresser kept it more "feminine" as she put it :)

Family members

Right now, this is probably the hardest on my family. 

I am just going through the motions of testing, scans, blood draws, just one step after another with no panic yet. 

But I see my husband's panic and interrupted sleep; my daughter, who is in college, crying helplessly on the phone, or my 10 year old son learning how to fry eggs and bringing us breakfast-in-bed on weekends or peeling endless pomegranates for me, or my parents zoom calls with endless cure discussions. 

So far, I am the only one that is not panicking yet -- my attitude is -- it is what it is and I continue to live with the parties, volleyball and son's playdates until I can't ... why rob myself and others way ahead of time of anything. And I am trying to keep up everyone's moral so they don't fall apart. 

I keep waiting for it to catch up to me and keep thinking -- what is wrong with me. I am genuinely fine right now.  Some people break a leg and put a cast on, I get cancer and there is a cure. Why worry now about if and buts...

A few people I talked to who have been though cancer, all described crying, depression struggles, the why me questions --- and I have not gotten to that yet.

The funny

For several weeks I have been in and out of the hospitals for different tests almost daily, and getting in and out of hospital gowns in a few minutes became so routine. 

I walked in for bone scan, and the guy in a white robe between small talk asked me to take off my coat...and I automatically proceeded to undress and took off my shirt as well. He paused, smiled and said that he is all for it, but he was here now just to pump radioactive stuff into my veins :)

And this is even before the anticipated brain fog from chemotherapy!

Bone scan 12/15

Chilled to the bone....with background music by Imagine Dragons "radioactive, radioactive".

Had to do a bone scan to figure out if the cancer has spread, that might not be caught by the plain x-ray.

So, first you are injected with radioactive fluids (!) and have to wait around for at least 3 hours. Then in a chilly room in the basement you are lying on a girdle, with your hands in a strap (is that how an insane asylum feels?) and a large flat square slowly moves up and down, and side to side. 

Several hours here or there -- I might finally learn how to meditate as at this point I ran out of all the lists in my head.

In the evening,  I forgot to check whether I glowed in the dark :)

Chemotherapy 101

What have been told so far from Lahey-- the three main chemicals in chemotherapy are:

1. Taxol, 1 hour, weekly
2. Carboplatin, 1 hour, every 3 weeks
3. Keytruda or Pembrolizumab, immune system booster, every 3 weeks, 40 minute

Plus another drug cocktail the night before with some steroids, Benadryl, nausea medication. Still trying to get the full list of pre/during/post medications.

I wonder if this is standard protocol across all hospitals or will this differ when we hear our second opinion in a week?

Second opinion

Lahey clinic was just the luck of the draw -- the only place that would take me off the street for my first mammogram within several days of the phone call. 

Once I finally got my diagnosis via biopsy, and while still going through the motions with Lahey, I reached out to Dana Farber Cancer Center to schedule an appointment for a second opinion.

I want to cover all my bases and compare all the options, especially considering that Dana Farber is one of the leading cancer centers and located in Boston.

I wonder, if they read the test the same way and would offer the same treatment plan as Lahey....

Treatment 11/12

Today was the day of reckoning -- at least half the tests came back. We had an appointment first with surgical oncologist, followed up with medical oncologist to discuss treatment options. George filled out half the notebook with notes...

"The cancer is a 4 cm invasive ductal carcinoma. Ductal means it started in the lymph glands, invasive means it spread to the breast. The tumor in the lymph isn’t strictly measured, it’s 2mm in the biopsy, but that’s just the part that was in the biopsy. The cancer is triple negative, which means it doesn’t respond to 3 hormones, estrogen, progesterone and human epidermal growth factor (HER2). It should however respond to chemotherapy."

Surgery on the breast will probably be a lumpectomy, just the cancerous part of the breast, rather than mastectomy, complete removal, unless genetic testing reveals a hereditary tendency towards cancer. (still waiting on results) Lumpectomy would be about 2 weeks recovery, mastectomy would be 2-3 months recovery."

Well, there are three options:

One: 6 months of chemotherapy, every three weeks for 4 hours each and every week an additional hour of immune treatment. After half a year of chemotherapy, the surgery of hopefully reduced tumors and limited lymph nodes and another year of milder oral chemotherapy (depending on the overall outcome)

Two: much more extensive surgery now, with removal of several lymph nodes (up to 24) which might result in lymphoma, followed by chemotherapy for 1 year

Three: with no treatment projected death within six month to a year

It looks like we picked door number one for now.

Scheduling tests

It seems that according to the protocol there is a litany of standard tests that are done prior to finalizing the specific treatment from MRI, to bone scan to CT scan.

It turns out, I have to be the one calling to set up MRI and CT (originally I thought that the nurse would be scheduling them up, same as blood work or genetic test), but it wasn't explained up front. So I called back the hospital on Tuesday to figure out if there is anything else required from me and was asked, by the way, have you scheduled your scans?

An hour on the phone, if not more and I was still unable to schedule anything. Had to drop the call as Max was calling from school and then decided in frustration to think about it tomorrow.

That turned out a good thing. An hour later, probably because I dropped the call, a nurse called and finally got an MRI scheduled for Saturday via emergency entrance.

Now that I am on the inside of the system with the cancer diagnosis it is strange to see how the hospitals create these additional rules and requirements. The few, I think, unnecessary appointments that take up lot of wait time --- required meeting another nurse in order to just schedule a biopsy, or for genetics 101 long chromosome explanations instead of quick blood test; but no roadmap or guidelines regarding numerous scans that are important and not easily arranged, most require different infusions (iodine, radioactive solutions, etc) and have to be scheduled and managed by YOU...

Genetic testing 12/9

I had to wait a week(!) for the required 2 hour genetic testing appointment. I thought, how impressive that field of genetics has advanced so much that it was no longer just a vial or two of blood, but something a lot more. 

So, I filled out a lengthy online form regarding family history and was looking forward to this appointment for 12/9 from 10 am -12 pm.

After briefly looking over my online survey, the nurse gave me a print out of gene combinations and proceeded with a general lesson about chromosomes and mutations, sort of genetics 101. 

After about 10 minutes, I explained that I was knowledgeable enough about what is a chromosome, how many we have and that some might have mutations --  understood enough of the basics. Then she said:

Nurse: "So if the result shows any mutations impacting breast cancer, you need to understand that it is not YOUR FAULT."

Me: "Hmm, I don't think it is my fault."

Nurse: "If you feel sad and feel like crying, it is ok. We can offer additional counseling right now."

Me: "I am perfectly fine, don't feel the need to cry and I don't need any counseling at this point."

At 10:35 am I was walked down the hall to draw two vials of blood.

So, instead of drawing this blood a week ago in any lab, I had to wait for a week for a scheduled appointment to get a mini lecture on genetics, agree to do an expended genetic testing and now will have to wait several weeks for results.

Friends embrace

I am so lucky to have friends (and I have yet to share my diagnosis with the majority) that just embraced and supported me from the get go with little fuss. 

Soups and salads, sacred food from a temple, boxes of persimmons and pomelos and pomegranates, rides to/from hospitals or dropping Max off here or there... 

And I am still fully functioning, for now just spending endless hours in and out of the hospital with numerous tests and on the phone with insurance.

No outward visible signs of any trouble in paradise, but the circle of embrace really invaluable.

Testing checklist

I now have an official diagnosis -- triple negative breast cancer that spreads faster than the other kinds. And Monday December 5 the flurry of activity finally picked up -- there are numerous tests that needed to be performed to figure out treatment options: 

genetic testing, 

MRI, 

CT scan, 

bone scan, 

numerous labs,

and even a port to implant under the skin

Finally, a bit more than a month since discovery, the rush is finally on.

Letting people know

Cancer. Breast cancer, triple negative. How do you tell people? Just come out and say it -- and then there is an awkward silence, or crying or hurried reassurances that "in this day and age they will figure it out". 

I think so far that has been the hardest part -- whom to tell, how to tell, and how to handle their crying. Or their prying eyes that try to find the cancer now -- you look kind of pale... and I don't. Who would have thought that this would be something I would have to think about and figure out now... 

With all the tests, hospital visits and insurance calls between the normal daily life, I have just been able to tell very few close friends and few family members. But then again, what do you say? Got cancer, but do know yet what to do with it, or how to treat it and it is a rare kind, fast growing... and, by the way, please don't panic.

I got my diagnosis December 1st, a few days before my mom's birthday. George, who is in complete panic mode insists that I tell my parents and kids right this minute. 

So I waited to tell after mom's birthday and then told my daughter who is in college, though it is her exam week and she would be home at the end of December.... 

George felt it couldn't wait and everyone deals with this in their own way.

Cancer Call 12/2

On Friday, 12/2, I got a 5-minute phone call from the nurse at 4:30 who hurriedly explained that based on the biopsy I have stage 3, fast growing breast cancer with metastases in lymph nodes. This breast cancer is "triple negative" and can't be easily treated with hormonal therapy (whatever that means). 

The next steps would be to do an MRI and a CT scan to see if the metastases have spread to any other part of the body. But, alas, it is Friday evening, so she plans to work with scheduling all of these tests sometime next week. 

"Have a great weekend," to be brief and to the point. 

Oh joy, what a delightful surprise to receive a cancer diagnosis at the end of Friday! It's the perfect way to end a long week, isn't it? You can just sleep it off over the weekend and wake up fresh as a daisy on Monday, ready to tackle the next step in your journey. Nothing like a little cancer to add some excitement to your life, am I right?

Good thing that I have a stable psyche and to some degree I was prepared, because of all of my self-diagnostics with Doctor Google. 

And I am off to Doctor Google to figure out what is the "triple negative cancer". This is a less common, fast-growing type of cancer, with a limited number of treatment options that occurs in 12%-15% of the population, with high likelihood of reoccurring... 

Now I will wait for the official explanation with the oncology team in a week, shouldn't just trust some Google search.

Official Biopsy Result

Diagnosis  A. 

LEFT BREAST 1 OCLOCK : INVASIVE CARCINOMA

HISTOLOGIC TYPE: INVASIVE DUCTAL CARCINOMA

GRADE 3/3, AT LEAST 10.0 MM IN LENGTH, INVOLVING MULTIPLE CORES 

Breast Biomarker Report for Invasive Carcinoma (ER/PR/Her2-neu):

Estrogen Receptor (ER) Status Results: Negative

Internal control cells Present and stain as expected

Progesterone Receptor (PgR) Status Results: Negative

HER2 (by immunohistochemistry) Results: Negative (Score 0)