32 ZAPS: c'est finis: posting from 3/14/17

32 ZAPS: ç’est finis

Last Friday, March 10th I put on my Capezio tap shoes and tapped my way in and out of the radiation room - my last of 32 zaps. With my shapeless cotton johnny untied and loose around my shoulders, this vision - vaguely resembling a costumed modern dancer, tapped a solo dance sans music. With my three beginner tap lessons behind me I tried the shim sham but hadn’t perfected it yet. So I went to the f-lap, f-lap, f-lap and then many small tap-a-taps. The radiation techs were so happy, all smiles and of course, they gave me a round of applause. After my treatment, I received a diploma! 

Imagine me doing this routine all the way to the ray gun:
https://youtu.be/YMhcjM02asg

I’d like to say this was easy, M-F for 6 ½ weeks but it wasn’t. Yes, it went fast, faster than I would have imagined. I got more at ease with the drill: undress, don the johnny with open back , uncover one breast, get zapped - first entire breast: long sounding drones with and without the whirring of the aperture opening and closing - and then the machine pivoting for its next target - the underarm scar where lymph nodes once were and side of the breast. The whole procedure was usually a few minutes with the set up taking the most time. They go for accuracy! 

At the mid-point, my 16 zaps my breast was pink, but by the end of the 5th week is was shocking red and really hurt. With seven zaps left, the technicians and a radiology/oncologist remapped my breast for a targeting of just the tumor site. They had all sorts of pieces to fit on the machine, much like a kitchen aid mixer. Then they drew with a sharpie a circle and then marked three spots and covered them with clear round stickers. The technician told me that if the stickers got bothersome I could take them off. So after I got home on that Friday I thought I didn’t need them. When I appeared on Monday, the technician named Barbara was surprised to find my stickers gone and the sharpie circle nearly invisible. “What happened?” she asked. I said, “I took them off, and they were hard to get off, I had to really work at it.” There was enough of the sharpie line left that my site could be reconstructed for treatment plus they had taken exact pictures of the original stickers so we went with that. I told her that given who I am, I needed to be told, “Don’t take those off and if you think you have to, call us first.” 

What I learned from this radiation treatment was that it was much more life affirming than I would have ever thought. Sure the burning is harsh on your skin, but you know it’s effective, you can see it is working to kill off microscopic cells that you don’t want in your body. The staff was so kind and helpful, I saw a doctor every week and there was an old fashioned patient chart! Yes, a chart that had lots of handwritten notes and pictures and it was so reassuring that so many people were looking at it. I also found that I met several frequent zappers in the waiting room. People talked with one another and it was less dreary than Dana Farber.

So except for a follow up visit to the doctor in about a month, I’m done. And the goal is to have this place like Brigadoon. It only appears once in a hundred years and then vanishes. That’s their goal and mine too! Enjoy Gene Kelly and Cyd Charisse.

https://youtu.be/dHJYqcjXsl8

As for the other part, Chemo #7, I became more proactive. A friend in treatment right now for breast cancer at DFCI told me she has a social worker that I could email. I did and found a wonderful caring person who could help me with my feelings of not connecting with my “team”. I wrote up questions for my oncology research nurse and she filtered them to the doctor at my visit on 2/28. Here’s what I emailed the nurse:

"1. Where do I currently stand on my DFCI treatments, specifically my status with the blood work and the lab results. 
2. Has my "team" noticed any significant lowering of my white blood cell counts since I started the T-DM1 drug?
3. Has my "team" noticed any changes in my blood work since the beginning of my protocol? and if so, what does that mean?
4. I have mentioned each time that I feel dehydrated. Does this have long term effects to my body, specifically my other organs?
5. Am I entitled to any information related to the results of the T-DM1 trial so far? For example, what might I be told if the trial is not working as intended? 

I would like to request that I have some verification from the doctor that there is monitoring of my DFCI care. It would be very reassuring to me if you could bring a current update of my case signed by the doctor. I could use some assurance that someone is actually overseeing my treatment and care.

I have been concerned, and thought I expressed it succinctly on my infusion visit in January, that I have felt there is a communication issue with my treatment at DFCI. It's clear that I will not be seeing the doctor through the end of April. I will be 1/3 of the way through my treatment and with 2/3 left to go, a report of some kind, even a doctor's synopsis would at least provide some concrete information on my progress or lack thereof on this T-DM1 medicine."

What I found out is that despite feeling bleh or meh, I’m doing really well. My bloodwork is good and they probably don’t have too much to tell me. The doctor also agreed to be at my next appointment and had also given me an option to connect with her by phone. So I”ll see her next Tuesday 3/21. 

I hope that there will be a breakthrough with their communication with me as a newbie patient. I had begun to lose confidence in this team. I learned from the social worker that I can switch to another doctor and not jeopardize the drug trial I’m on. So finger’s crossed for next Tuesday. However, I own a part of this, and it’s clear I need to do some soul searching as to what I’m looking for in my cancer care or just care in general. What if they aren’t warm and fuzzy, maybe that doesn’t matter. I’ll give it some thought.

If I calculate correctly, my treatments will continue until the very end of September. After that there will be follow ups and of course my connection with this oncology team will be long term. So I need to figure out if it’s worth staying with them or try another group. Tuesday’s meeting will be one more clue to my long term relationship.

Happy St. Patrick’s Day…. maybe my T-DM1 drug will have food coloring in it to make it green. Maybe?