Test day

Now that the chemo is over the doctors have to figure out several things: did it work, how well it worked and when the operation should be scheduled.

As I see it from the inside, at this point, there are very few precise diagnostical tests available to actually pinpoint the cancer cells. Most of it is a bit of approximation and protocol: this larger, darker mess might be cancer, so let do these MRI, CT scans, or ultrasound to narrow the guessing just a bit..., but the only way to be sure seems to actually remove the cells via biopsy or actual operation and grow them.

So, in this imperfect world, I spent the entire day today, Thursday, being prodded, tested, and imaged to such an extent that could barely talk by the time it was over. From 8 am in the morning till 4:30 in the afternoon, Dana Farber was my "experimental rabbit" trial.

I had:

• numerous vials of blood drawn in preparation for the operation
• Keytruda treatment (I still have at least 4 more to go, every three weeks, I believe)
• an MRI
• a mammogram
• an ultrasound

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 :)

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.