In old times people used to write letters. Collections of letters are famous. Often times they offer insight in history like nothing else. There is something about writing a letter ink on paper when one has to think through every word so that there are not too many corrections on the paper. We are blessed with technology. You can proofread, erase, grammar check, you can even ask AI to write a letter for you. Does it mean letters are losing personal touch? I don’t know. As I have mentioned before I have my cancer twin. She calls me WW (Wonder Woman), I call her TT (let’s say it stands for treasured twin). Fate and a friend of my connected us and now we are in it together for the rest of our lives. Here is my letter to my twin:
My dearest TT!
TNBC is a calamity for both of us and so many others. The tsunami of information. Miriam of questions starting with “why me?” and going further – What is best for me? Before or after? What kind of surgery? Radiation or no radiation? The truth of the matter is that not one single expert has an answer. There are statistics but all of us including the two of US really want to be in the part of statistics that wins. It is hard because the decision is ultimately ours and that means forever facing the consequences of decisions we make. I have seen it all, cure and death, patient willing to be treated as aggressively as possible a few days before they passed and patients making a conscious decision not to get treated. Each and one of us has a right to make that decision whether it is right or wrong. Many of us will continue questioning the choice every day. You and I must be very special because we did not get just a garden variety of breast cancer, no we had to get into the 10% of the lucky ones. What makes it different? The usual tools do not always work. Neoadjuvant works better than adjuvant. Nobody really has an ideal regimen although I am sure it is coming soon. Advancement of PD inhibitors made a small but sizable improvement but they are not for everyone. The other “special” is that Ki67 more than 90% does not leave too much time for pondering. I have embraced my TC and tried to grasp to every straw to avoid AC (my TILs, negative Signatera, shrinkage on the US, negative nodes). I dug out all the articles and regimens that avoided AC. And yet here I am three months later still recovering after AC and getting ready for surgery. And if I thought chemo was a lot of damage, double mastectomy is no small thing. And yes, I know there is a good probability I was one of those who were overtreated. But at the end of the day I think that I want to live longer no matter what. I have not done everything I’d always wanted to do in this life. I have the same feeling about radiation – it is going to be more damage, more side effects, more time of being a perpetual patient. But if it helps strengthen the result – I am for it. Another thing that I can pride myself with is that once I have made up my mind – I do not look back. It may not have been a good thing more than once but I cannot let myself be eaten by doubts. One more thing – everything we read and every single protocol offered by specialists in the the field, even TNBC specialists – everything is based on standard of care. Unfortunately standard albeit needed is safely tucked in the box. Standard does not look into specifics – how to treat you with your autoimmune diseases and your mutations and me with my mutations and there seems to be plenty of them. It is hard to give advice when the situation is so complex. I can tell you a few things. One, we all read and believe in things we want to see and hear. And, of course, we both would love to have less damaging therapies. Two, nontraditional word is traditionally very strong to support the body and I believe in its power to do so. That’s why every morning and every evening I sit on my bed and squeeze my eyes and swallow spoon after spoon of bitter, pungent, smelly things. I believe in their power to help me and protect me. They can protect you as well. Three, no matter what we will live, I just want to wake up after surgery and NOT have to take more chemotherapy with permanent state of not being OK (and that is exactly what adjuvant means). Adjuvant chemotherapy, usually Kiskali works well but boy have I seen those side effects. So to me adjuvant means being sick for much much longer. Finally four, TNBC when it comes back it does so with vengeance. Hence I opted to take a risk of cardiac complications and protect my heart rather than increase the risk of it coming back. You, my dear TT did not get Keytruda and thus are on 2 drug regimen instead of 5. That does not feel enough. As I have said before in addition to bad disease we are burdened with making hard choices. I do not know you that well. I know you as a courageous, wonderful, talented, kind, and brilliant person. I will support you no matter what you decide and no matter where you go and we will have a chance of doing something together when we are well. I think of Scarlet O’Hara standing on the fields of Tara and saying “I will never be hungry again!” And I say, “We will be well again!” Let’s just hope that we get there with minimal damage possible and our battered bodies with recover and the damage will not be great. I am praying for both of us every Shabbat, I look for the angels time every day to make a wish three times and the wish is always the same – to achieve complete pathological remission with minimal side effects. I am with you, Twin, no matter what.