Chemotherapy was just the beginning of my long journey. The ups and downs of chemo tested my will to fight, you bet there were days I just wanted to say screw chemo, but I had to constantly remind myself that as lousy as I felt it was temporary, there were better days ahead. Chemotherapy proved to be one of the most challenging things I have faced, at times I doubted myself, I questioned whether I had it in me to fight, often thinking was I strong enough to withstand the challenges that I would face in days, weeks, months and years ahead. The reality was that at some point I would be faced with having to have chemo again. I live my life in months, every month I have blood work to see if my infamous tumor marker is holding steady, or hopefully dropping; that again is an indicator my treatment is working. It is not always the best indicator, as you may recall everyone’s cancer is different, but from my initial diagnosis my tumor marker has been a reliable indicator. Tumor marker alone does not confirm treatment is working, every three months I also have CAT Scans and Bone Scans. It is a repetitive cycle that is filled with anxiety the days leading up to the tests, as well as the days waiting for results. My tumor markers dropped significantly during chemotherapy, and scans showed some areas that were initially present in the beginning had become smaller in some cases no longer present.
With the end of chemo a new treatment plan was in place. Post chemo I started to take Tamoxifen because I was ER positive (estrogen receptor) this was the next regimen I would take. The plan was to start and monitor with the labs and scans. My initial thought was great, people who take this medication can take it for a long time, so in my head I thought perfect I will take this for the next few years and at some point likely change to something else when it no longer works. A few years was great, this was now how I broke down my life in increments of time. Tamoxifen is hormone therapy which slows or stops the growth of hormone-sensitive tumors. In my case the goal was to slow the growth. The medication acts by blocking the body’s ability to produce hormones or by interfering with hormone action. As with any medication there was the potential for side effects but again I would take the side effects and manage them if the treatment was going to work; benefits outweighed side effects no matter what. I took Tamoxifen daily as prescribed and managed limited side effects, I felt good, medication seemed to be working according to the initial tests. Tamoxifen was working initially but as I will share soon it was short lived.
Tumor marker results monthly give some sense of reassurance that my treatment is working, there is always panic and worry on test days; often running the worst case scenarios over and over in my head. On a daily basis every new ache or pain raises a red flag, normally a new ache or pain I would brush off as the result of a workout or something, but now my mind immediately thinks cancer, how could I not. I do continue to exercise and even push myself a little more than I should at times I’m sure, but that is my outlet; helps manage the stress and anxiety that comes with living my life with MBC, month to month preparing for the possibility of bad news. Scan days are filled with the same stress and anxiety, worrying that something new will show up. It’s just as stressful for Matt, as well as family and friends; selfishly there are very few that know the days of appointments and tests, I would prefer people do not worry, maybe it’s strange but I worry about them worrying. The best part of these days is of course sharing good results, I love for it to be every time I have my visits but I know that’s not always reality. There is absolutely nothing worse than hearing there is more Cancer or my tumor marker went up; it literally knocks the wind out of my sails. As a nurse I hated delivering bad news, so now as a patient its devastating. I pray for a day that just maybe, although not likely nothing will show on my scans. I can never be in remission because MBC is a stage IV Cancer but I have the potential to meet “NED” someday which means No Evidence of Disease. I really hope for myself and everyone else faced with MBC that we meet “NED” someday soon. Until then I will continue to fight to see the day when there is a cure, when MBC becomes a chronic illness and to see the “statistics” for survival improve.