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)

Biopsy 11/29

Biopsy. Breast biopsy is a procedure in which a small sample of breast tissue is removed and examined for the presence of cancer or other abnormalities.

Numbing, long needle guided by ultrasound screen going in, the loud clicking sound when the tissues are cut (very Harry Potter Aragog clicking) -- 5 samples from the breast. I imagined myself on the forest floor of The Forbidden Forest looking for something...

A breast biopsy, you see, is like a treasure hunt where the chest is the chest and the treasure is, well, not treasure at all. Instead, it's a tiny little lump that could be causing quite a lot of trouble. But unlike a treasure hunt where the goal is to find riches, the goal of a breast biopsy is to find peace of mind and hopefully, a clean bill of health.

So now wait and see.

Then the process repeats again for the lymph tissues. Again 5 samples. Lots and lots of sticky tape and ice packs and you are off.

Well, it is not pleasant, but the three medics that performed it in the basement of the clinic were very efficient, kind and considerate. They dutifully chatted away with me about kids, travels and shopping, while my left hand went numb from having to hold it above my head. 

Instead of the scheduled two hours, they managed to get everything done in one.