I would rather not write about this part of my cancer story, but I have held off long enough.
I always knew progression would happen, again. Having had over four years of stable disease, I had become happily less fearful about my scans showing my disease was active again. I would never describe this lessened fear as thinking I was cured. I did, however, want to believe in that possibility. Just like I wanted to believe that my marriage would never fall apart yet it did.
Two devastating events happening at the same time is . . . well, I am sure you can imagine how difficult my life has been over the last 6 months.
For the past 8 months, my oncologist and her team would review my chest scans. They were never in complete agreement that the one mass of lymph nodes—that has been my nemesis since the beginning—was enlarging. The growth was a few millimeters each scan every three months, but that tiny increase did not warrant a drug treatment change. There was the nature of a CT scan to consider, and the fact I had been ill with whatever germs I had picked-up unknowingly from a third grader which might be causing those lymph nodes in the middle of my chest to enlarge. There were times I thought maybe my oncologist was being kind and not wanting me to worry. But, she has never been that way—always direct, never sugar coating anything regarding my disease. Time was needed to conclude true progression.
The most recent impression from my CT scan was stated this way by a radiologist: minimal interval increase in size of conglomerate soft tissue involving the upper mediastinum with slightly more pronounced mass effect on the lateral wall of the trachea. This mass, considered fused together lymph nodes, is located between my lungs, snuggled against my trachea, and in an area with important blood vessels making it hard to reach surgically. Its increase in size has caused my normal tubular trachea to turn into a “C” shape at the location of this mass. Now, as you might have guessed, the time had come to face reality. My mass was in fact progressing. A treatment change was in my future.
Years ago I wanted this area of death radiated. It was decided, though, that it wasn’t a good idea due to my prior radiation treatment having occurred around that location. Too much radiation to one area is not good. I have had two so far. The first radiation I received happened after my stage 1 diagnosis. Those beams were directed to the lymph nodes under my right arm and to the location of the 5 mm mass that was removed a couple of inches below my collarbone in 2009. The second was to the single nodule that progressed in my right lung in 2015.
The troubling result of this mass essentially working toward crushing my trachea prompted me to ask that we revisit the possibility of treating this mass with radiation. Years have now past since this area was radiated making it safer to radiate again--hopefully there would be minimal to no crossover when the plan was executed. Plus, the drug Kadcyla has been wonderful to me in terms of side-effects and control of my disease therefore I wanted to avoid moving to other drug treatments.
I met with the radiation oncologist at UNC Hospitals. She was warm and made me feel like she would do everything she could to help me. She made me feel I mattered. As any patient knows, that is crucial. Radiation was going to happen.
The following three weeks, (Feb 24 through March 13), I worked four hours and then traveled to UNC Hospitals (2 hours 15 minutes one way) Monday to Friday. My secret that I have kept from my team and the administration at my school is no longer hidden. Never did I want them to know, but with having to receive treatment for 15 consecutive days, minus weekends, they had to be informed.
My next scan is May 4th. That will be a nerve wracking day.
The rest of my life has been emotionally charged as well. On March 23rd I moved out of the house I have lived in since 1999. I raised my kids there. The memories inside those walls fill every single crevice. I am heartbroken to leave it all. The decision to move away from my husband of almost 27 years was not easy, but I had to do it, for myself. The reasons are many, but the most difficult one to deal with is this: an alcoholic will always choose alcohol over you. If I wasn’t the priority, if I wasn’t being respected then why would I stay? Why would anyone?
So, today, during this Coronavirus Pandemic, I am forced to quarantine in my new place because being a cancer patient in active treatment puts me at high risk for contracting that disease. Being trapped within my four walls has allowed my stress levels to come way down as I work my way through my things finding new places for them to reside. Despite my worries about the economic consequences of this pandemic on individuals and society in general, my being able to wash away so much of the stress I have been experiencing has been a great relief for me personally.
In the next few months, I want to be able to sit back and happily proclaim I made the right decisions concerning my treatment and my future divorce. This combination of events has been so very hard. Only the passage of time will I know if all my decisions were the right ones.
By the way, April 1st marked seven (7) years since I found out my disease was still trying to kill me with the CT showing the mass that was just radiated--along with lung nodules in both lungs that have disappeared. Seven years!! Fifteen years since my diagnosis of stage 0. I think that is amazing.
I always knew progression would happen, again. Having had over four years of stable disease, I had become happily less fearful about my scans showing my disease was active again. I would never describe this lessened fear as thinking I was cured. I did, however, want to believe in that possibility. Just like I wanted to believe that my marriage would never fall apart yet it did.
Two devastating events happening at the same time is . . . well, I am sure you can imagine how difficult my life has been over the last 6 months.
For the past 8 months, my oncologist and her team would review my chest scans. They were never in complete agreement that the one mass of lymph nodes—that has been my nemesis since the beginning—was enlarging. The growth was a few millimeters each scan every three months, but that tiny increase did not warrant a drug treatment change. There was the nature of a CT scan to consider, and the fact I had been ill with whatever germs I had picked-up unknowingly from a third grader which might be causing those lymph nodes in the middle of my chest to enlarge. There were times I thought maybe my oncologist was being kind and not wanting me to worry. But, she has never been that way—always direct, never sugar coating anything regarding my disease. Time was needed to conclude true progression.
The most recent impression from my CT scan was stated this way by a radiologist: minimal interval increase in size of conglomerate soft tissue involving the upper mediastinum with slightly more pronounced mass effect on the lateral wall of the trachea. This mass, considered fused together lymph nodes, is located between my lungs, snuggled against my trachea, and in an area with important blood vessels making it hard to reach surgically. Its increase in size has caused my normal tubular trachea to turn into a “C” shape at the location of this mass. Now, as you might have guessed, the time had come to face reality. My mass was in fact progressing. A treatment change was in my future.
Years ago I wanted this area of death radiated. It was decided, though, that it wasn’t a good idea due to my prior radiation treatment having occurred around that location. Too much radiation to one area is not good. I have had two so far. The first radiation I received happened after my stage 1 diagnosis. Those beams were directed to the lymph nodes under my right arm and to the location of the 5 mm mass that was removed a couple of inches below my collarbone in 2009. The second was to the single nodule that progressed in my right lung in 2015.
The troubling result of this mass essentially working toward crushing my trachea prompted me to ask that we revisit the possibility of treating this mass with radiation. Years have now past since this area was radiated making it safer to radiate again--hopefully there would be minimal to no crossover when the plan was executed. Plus, the drug Kadcyla has been wonderful to me in terms of side-effects and control of my disease therefore I wanted to avoid moving to other drug treatments.
I met with the radiation oncologist at UNC Hospitals. She was warm and made me feel like she would do everything she could to help me. She made me feel I mattered. As any patient knows, that is crucial. Radiation was going to happen.
The following three weeks, (Feb 24 through March 13), I worked four hours and then traveled to UNC Hospitals (2 hours 15 minutes one way) Monday to Friday. My secret that I have kept from my team and the administration at my school is no longer hidden. Never did I want them to know, but with having to receive treatment for 15 consecutive days, minus weekends, they had to be informed.
My next scan is May 4th. That will be a nerve wracking day.
The rest of my life has been emotionally charged as well. On March 23rd I moved out of the house I have lived in since 1999. I raised my kids there. The memories inside those walls fill every single crevice. I am heartbroken to leave it all. The decision to move away from my husband of almost 27 years was not easy, but I had to do it, for myself. The reasons are many, but the most difficult one to deal with is this: an alcoholic will always choose alcohol over you. If I wasn’t the priority, if I wasn’t being respected then why would I stay? Why would anyone?
So, today, during this Coronavirus Pandemic, I am forced to quarantine in my new place because being a cancer patient in active treatment puts me at high risk for contracting that disease. Being trapped within my four walls has allowed my stress levels to come way down as I work my way through my things finding new places for them to reside. Despite my worries about the economic consequences of this pandemic on individuals and society in general, my being able to wash away so much of the stress I have been experiencing has been a great relief for me personally.
In the next few months, I want to be able to sit back and happily proclaim I made the right decisions concerning my treatment and my future divorce. This combination of events has been so very hard. Only the passage of time will I know if all my decisions were the right ones.
By the way, April 1st marked seven (7) years since I found out my disease was still trying to kill me with the CT showing the mass that was just radiated--along with lung nodules in both lungs that have disappeared. Seven years!! Fifteen years since my diagnosis of stage 0. I think that is amazing.
