Monday, December 14, 2015

Inevitable Change/Treatment #42, TDM-1 #25

Living is a continuous chain of events involving change. Luckily, change is not always one enormous chaotic event. Everyday changes can be subtle--a preferable condition don’t you think?  Unless you win a million dollars; that is another issue altogether.

Changes can be good or bad. My platelet changes continue to be not so good. Three weeks ago my platelet count was 106,000 per cubic millimeter. Before my recent blood-work, I figured my count would not be too low because I cut myself with scissors and after applying direct pressure, the bleeding stopped. They were down, though--86,000. Not the number I wanted to see, but a number that was acceptable to continue my treatment with ado-trastuzumab emtansine (Kadcyla/TDM-1).

I continue to do well physically after Cyber-Knife radiation to the one remaining tumor in my right lung. Occasionally I feel pain at the bottom of my artificial breast where the radiation was concentrated. The pain may be bone related rather than soft tissue; it is difficult for me to discern.

I saw my wonderful physician’s assistant during my regular infusion appointment. She was involved in the decision for my recent radiation. In my opinion, feeling cared for is probably the most significant part of the patient and medical professional relationship. She definitely meets this criteria by addressing even the smallest of my concerns, cancer related or not.

Back in September, I didn’t receive my scan report so I asked for a copy. Words like “worrisome” and “worsening” are difficult to read. Those words and similar ones from my past have left me trying to regain my balance on this tight-rope of life that I am walking. When I first was made aware of my cancer’s recent progression, I teetered. With radiation given the go-ahead instead of the head shake of “no” that I typically see and hear after my suggested treatment ideas, I recovered. Now, with radiation behind me, I continue to cling to the words my radiation oncologist spoke at our first meeting. His words gave me hope that the opacities seen on the scan are not suspicious for new metastases. I take comfort in believing the radiation continues to change the 13 mm nodule in my right middle lobe into a harmless group of dead cells allowing me to walk balanced and steady on that rope.

February will bring news of what is happening inside my body. My future will again be told. This is the life I lead. Every three months or more, I get a glimpse into my immediate future. The changes may not be noticeable, might be subtle, or might be chaotic. We all experience change, but a cancer patient is constantly reminded that change is happening.

This happened in  August--thank you, Toyota! 
I feel like I have lived in my van for the last 10 years. 
We bought this van just before my first diagnosis with breast cancer.
I am grateful for modern medicine and the people behind the scenes that continue to give me an excellent quality of life. Because of it, I have been able to drive hundreds of miles on North Carolina roadways bringing my children home from college for the holidays. I feel lucky that I can think ahead 6 months and allow myself to imagine witnessing my two oldest daughters graduating in May. Once they graduate, change will once again greet me as my twin daughters make decisions about where in this world they will live and work. 

Yikes! That is a long way away.
Last week we learned my second-born-twin daughter, before she settles into a new job, will experience new sights and sounds with her first airplane ride—that she remembers—and her first travel outside of the USA. After months of preparing, she submitted an essay, an itinerary of cities to visit and cultural events to see all done to win a $9,000 travel-abroad scholarship through the university she attends. A selection committee of 7 interviewed her and made the decision to offer her the opportunity to spend three months in Japan this summer.  We went to the post office a few days ago where she applied for a passport—something I have never done. My academically driven daughter gave up many social pursuits to have a chance for this experience. Her hard work has not always opened doors for her, but because she continues to work hard despite disappointments, she found a door that opened, and she was welcomed through it. (Sort of reminds me of my continuous pursuit of treatment options not considered by my doctor. My recent suggestion, radiation, was one of those options she had not considered.) My daughter’s award brings new excitement and fear within me—Japan is 14 hours away by plane, approximately 7,000 miles from home. If she needs me, I can’t jump in my van and be there in hours. My precious baby’s face that I continue to see from 21 years ago, is no longer a baby. I will put her on an airplane and while she is gone, I will have trouble falling asleep, but I know it is a trip she must take. She will return changed; I will be changed as well. When I gave birth to all of my children, I didn’t consider how profoundly the letting go part of parenting would affect me. It is hard and necessary.

Some change is difficult; some change is not. Some is quick; some is slow. I continue to hope for slow gradual changes in my life. That kind is best. Like a child growing-up, it may feel like it happened over-night, but it didn’t—it was slow and steady.


  1. Do your doctors have any thoughts about why the platelet count is decreasing?
    That sounds like a wonderful opportunity for your daughter, as difficult as it will be for all of you!


    1. Hi, Cathy. I hope you are doing well.
      My doctor and PA have said despite TDM-1 being a cancer-targeted drug, it is tough on platelets--at least for me. It is just another lovely side-effect. There is nothing that can increase them so all that can be done is to decrease my dose and treat every 4 weeks or longer when necessary instead of every three. Makes me mad that my body isn't recovering like it should. There is always something. For now, as long as my platelets stay above 50,000, TDM-1 won't need to be reduced anymore. With Taxotere, my white blood cell count suffered. Luckily, Neulasta helped that problem.