That’s what I wanted to know when I had my appointment with the Oncologist this Monday. I had prepared it well. I had prepped a list of all my ailments in order for them to know and to see what they could do. I also prepped a list of questions. I wanted to know why I will still get my full dose of chemo when Theo is way smaller. And I wanted to know what to expect as to further treatment and when I get my energy back.
My normal Oncologist (still in training) was on vacation so I was scheduled to talk to the main Oncologist. When we got there we could walk right through. But not with the Oncologist but with a nurse. She was nice and all, but not what I expected. With her I went through my list of ailments. That went OK. About my nails she said that I should expect that they will fall out. Hmmmm. Because of that and because I was having breathing problems (not bad, I just can’t breath very deeply) she said that maybe they should change the dose… but she would have to talk to the doctor. Yes. Thats what I wanted. I was also almost ready to ask for him because that was what they told me.
A weird start to the appointment.
When the Doctor came in I was ready with my list of questions. The first one being if they could skip the Bleo. Thats the stuff that really makes me sick and what hits my lungs really hard. He said no. Apart from not wanting to change the protocol he didn’t really give a reason. BUMMER
About my nails he said that they won’t fall out, probably. I thought that was better then to be sure that they would fall out.
Next was my question what will happen after round 4.
After my last round I will have a CT scan. On September 10th, I’ll have an appointment with my oncologist where we will discuss next steps. If the CT shows that Theo is smaller then 3 centimeters (±1 inch) then I will start a ‘regular’ cancer monitoring regime. If Theo is bigger then 3 centimeters I will do a PET scan. A PET scan can differentiate between active and non active tissue. Active is bad…
Based on what the PET scan shows they will decide if they will do radiation therapy or not. Radiation is no fun because of the side effects and the fact that it also not good for my lungs. The Oncologist said that he expected that my tumor will be 3 centimeters or larger and that the PET scan path is for me. He advised us not to book a vacation at the end of September. BUMMER. Also because this part is no exact science. He said he has never had such a case as mine. And also I know from Survivor Matt that there is no clear cut diagnosis and treatment.
Survivor Matt went to several doctors who all gave him different treatments. In the end he chose not to have any treatment and just rigourus monitoring. This proved the correct course for him when it eventually showed the tumor shrunk more. This is not to say that I should do the same thing, every case is unique. It’s just that the doctors won’t be sure either.
So another hurdle is still to come.
Getting Physically and Mentally Back on Top
My last question for the Doctor was to ask if there are any existing rehabilitation programs for cancer patients who are done with their treatment. Currentlt my physical state is not fit and I expect that mentally I will be dealing with some stuff when I am done with the treatment. Instead of just waiting for whatever to happen and dealing with it when it comes, I want to see if I can preempt or actively work my way though the aftermath. I want to be physically and mentally fit as soon as possible. So let’s get help.
He gave me the adrdess of ‘Herstel and balans‘ (‘Recuperation and Balans’). They offer programms with exactly the mix of physical exercise and mental coaching to get back on your feet. That sounds good! The insurance will probably won’t cover it (the basatards!) but that won’t stop me. As soon as the end of the treatment is in sight I will check them out more thouroghly to see if it’s the program for me.