I am so sorry it has taken me this long to write. In part the explanation is purely physical. The decision was take to start a tomotherapy over 3 weeks. So On june 10th I started and in theory will be finished on july 2nd. The purpose is not curative (to get rid of the tumor) but to provide some pain relief for the growing tumor in my left psoas muscle.
So the silence started because I was in a LOT of pain and basically learning to deal with the painkillers (took a while and a pain specialist to tackle what was right) and then the radiotherapy immediately led to nausea/vomiting loss of appetite and fatigue all day long, so go and come back from each session and then lay down was all I could master some days. I loss my appetite for life too....and have lost some more weight (yeah about 10 kilos for those who have not seen me since the hospitalization you might have a bit of a shock).
The second explanation was the psychological burden of this past month. I have seen and met so many people in cancer waiting rooms with conditions 10 worst than mine and always wonder how can they do it. Well you just have no choice do you? I have been extremely lucky in 5 years this is the first time I am dealing with pain and the traditional side effects (nausea and vomiting for which nothing seems to work and the only thing I have not tried is a good old joint). So I am even in in more awe on cancer patients around me. It sucks, and days can be soo dark and lonely and you see the dots and cracks on the wall and thoughts just seems to go nowhere but toward finishing this whole thing. So basically I was in one of those dark spots and I shall make no effort to sugar coat this.
Within 3 days of starting the radiotherapy the pain started to diminish. I was able again to sleep on my back. That was a huge relief! But then also monday last week my blood readings were a bit scary with regards to some markers that they look for in melanoma (LDH and CRP), they had doubled! which in my history has always indicated progression of disease. So my oncologist ordered another blood test this monday and then a CT scan yesterday because he was worried. The blood markers had reduced X 2 in one week to our relief, and the CT yesterday showed no new tumors some regressing, some stable and the tumor in the psoas has not changed. So that was a huge relief as the oncologist told me if he saw any new tumors he would have me stop the radiotherapy and start taking targeted therapy again (dabrafenib) which we know only gives and extra few months of relief and then I have nothing else in view medically speaking. So I was in a very, very dark place and started of course going there in my thoughts way too often (plan my cremation, funeral, make boxes of souvernirs for my kids, re-stating to my family my wish for active euthanesia if in too much pain, thinking of palliative care places as i do not see me dying at home, etc).
But there is always light. My parents presence and the enormous structural and affective support comfort me in ways that I would not have enough words to describe here. I am so lucky to have parents which not only do I love and respect but whom I just adore being with 24/7. Their presence, discrete and powerful has held me through this and reassures me that they "have me" even thought I am 43 and probably should be taking care of them. The kids have been amazing and have taken on their school and home duties and responsibilities with brio and pride. Alex is exhausted - it pains me to see his burden and anger with the situation, he is now at a conference in greece and bulgaria and my only hope is the air and disconnection from this cancer world will give him some release from taking everything on his shoulders. As on top of me his mother -who is old and has many health issues to many to be numbered - has not been doing well and this is weighting heavy on his and his siblings.
For now the hardest is managing the fatigue and the nausea/vomiting. I just came out of my psychiatrist and we made a list of all the drugs I am currently taking
-anti-virals
-antibiotics
-anti-anxiety/sleeping pills
-anti-nausea
-pain killers
-anti-imflammatory drugs
-stomach protection drugs
we agreed that a big challenge is to accept that currently I am in some sort of chemical prison (adding up the left over effects of the recent chemo and IL2 toxicities). So I and we have to for NOW accept this and hope after the radiotherapy we will be able to drop some of these drugs and have less pain and less radiotherapy side effects so that Alex the kids and I can enjoy part of the summer (we have many gorgeous offers of places we could go to and visit from friends)
I am still bald, but have a baby peach fizz all white, my eyebrows are white too. I feel like some the mean character is some James Bond movie but the kids are used to me now and it has been warm so I am not even bothering "covering up". F*** that!
So my hope is my next post will be a gorgeous photo of the ocean or south of france or the mountains with lots of fresh air!!!
Thank you all for the messages and txt and discrete ways of letting me know you were worried, now you know that so were we but we are breathing fine for now.
Shall your summers be filled with light each day!!!!
