I started writing this blog post yesterday and it was titled ‘desperate and dateless’ and after a doctors appointment today I needed to change the title.
I know many of you have been waiting to find out the results of my PET scan that I had last Friday and I apologise for not updating you earlier. It has been a really hard week since finding out last Wednesday that treatment was not working and waiting for my PET scans to establish how bad the situation is. I needed time to process the information, but also have the time to communicate the news with my family and friends. To be honest, I also didn’t know how to tell you the news.
On Monday we were definitely going into my oncologist appointment expecting disease progression, but we didn’t know the extent. I had pain around my liver so I was expecting that the issue would be with my liver lesions. There was a small lesion on my liver active, the inactive lesions on my lungs had grown, but most significantly there was what will now be known as ‘monster’ on/in (who knows!) my pancreas. My monster was 5.5cm – a huge growth in just one month. It was this lesion that was causing my pain, a pain that I had tried to explain to my doctor a week earlier as being caused by belly laughter and there was no reason to be concerned.
Where did this leave me treatment wise? Well, I was feeling very desperate and dateless. I felt that no one wanted to come to my party, my melanoma party.
The plan is to return to Keytruda and hope that in 6 weeks we will see a reduction in my lesions or stability – my first treatment is tomorrow. There are no clinical trials I am eligible for, so that’s ruled out. And for the monster that is out of control, I was hoping that maybe the option of radiation, or even surgery, would appear, but due to the difficult location this did not seem like a possibility.
For the first time in 2 years I felt, and to an extent still feel, that this is the beginning of the end. I don’t know whether I should expect that Serge and I will be able to go overseas soon, or whether I will make it to my 25th birthday in July, or whether I will see another Christmas. Unlike 2 years ago, I was too scared to ask my oncologist directly what my prognosis is. Psychologically I was worried what the answer to this question would do to me. Would I be able to accept it like I did last time and not let the poor prognosis change my ability to keep on going? Would meeting with palliative care, even if it were just for emotional support and pain management, make me lose hope?
I still have not decided if I want to have this conversation with my oncologist, maybe if things aren’t looking up in 6 weeks, I will choose to.
So, back to feeling desperate and dateless.
Two years ago I was adamant that I would never take on a treatment that would impact my quality of life significantly and not actually buy me much time. To a large extent, I still feel this way. However, this week I felt desperation. I am not ready to die. I am not expecting or looking for a cure, but I am willing to do what I can for time.
I could have accepted that radiation or surgery was unlikely options for dealing with the monster, but for peace of mind, I needed to hear this from a radiation oncologist and a surgeon.
Today my oncologist organised for me to see a radiation oncologist at the PA and to my shock, he has agreed to radiation on the lesion in/on my pancreas (monster). Yay! I was so shocked by this news because I thought I was going to have to fight for this and pull out the whole ‘I am too young to die’ argument – radiation on that area is very unusual because of its proximity to other crucial organs. I think the doctor thought I was a bit weird for being so excited about having radiation, but for me this is a slither of hope that we can control my disease that little bit longer.
Next week I will meet with a surgeon, but surgery really isn’t an option due to the recovery time and the real impact it will have on my quality of life. At the end of the day I have terminal cancer, I don’t want to spend weeks or months in hospital missing out on the fun of life. However, I think it is still important to meet with the surgeon and discuss what could happen down the track for me.
So, someone came to my party!!! I am not so desperate and dateless. I will be having many dates at the hospital starting the end of next week!
PS enjoy the picture of me with tears in my eyes trying to hold it together for a photo post PET scan results and then not being able to maintain the smile and the bottom lip quivering. Priceless!
