Friday, November 4, 2016
Today I am out of sorts. This generally happens to me when I have to go see my oncologist and today was no different.
Bobo came to me. Together we try to figure out the insanity that transpires during my appointments. My 9:45 appointment began at 11:15.
He, my oncologist, sent me his newest guppy to figure out what I was doing. She was a real b#*@! and I didn’t like her. I actually argued with her and I’m proud of myself for sticking up for myself. She was telling me I’m fine and my oncologist wouldn’t have to see me for 6 months.
“Hang on,” I said. “I have a report saying I have cancer in my neck which should be radiated in a clinical trial and some new spots in my pelvis from L2-S3. How is it I am fine?” I think they are trying to get rid of me.
She also said that they wouldn’t be doing my monthly injections at the hospital any more. Go to CCAC. “Well that’s nice,” I responded. “Find me someone who knows how to inject the needle in Scarborough and I will go. And good luck with that….I don’t enjoy being tortured.” Asked her who I go to to complain about this. I think she was shocked I said this. Too bad. I tired of explaining my life to new people every time to go there.
I told her I wanted to see my oncologist because I wanted a second opinion of an MRI from another hospital. She told me he was busy. I insisted. She left us for a bit.
So in he waltzed, late, with a parade of young hopeful oncologists (3 from Brazil, 1 from some other country). “Oh this is going to be fun”, I thought. “I have an audience, students…my specialty.” I told him the reason why I wanted another MRI at a different hospital was that I wasn’t convinced about what I was told about my neck. After all, they messed up before on a tumour on C5 and then told me it wasn’t what they thought it was during the pre-op. radiation treatment. I went to a chiropractor and had my neck painfully adjusted and maybe it’s just inflammation. He downplayed the previous C5 neck error. I must say I had the students hooked though. They laughed when I told them I wasn’t going to be zapped for nothing.
My oncologist told me that the hospital MRI machines were different and what specific part my radiation dr was looking at may be different then theirs and what was the point in doing it again? He said if I wasn’t symptomatic (feeling pain), so it didn’t matter if I decided not to do anything right now. He then told me that my cancer was slow growing and even if I did nothing (which apparently the treatment in Germany counts as nothing to him), it would be slow. He is in complete denial that my “alternative” treatment is slowing the progression of the disease. Grrrr.
I find his explanation of my condition fascinating as I am young, pre-menopausal (spreads faster than in older patients), and was diagnosed with a INVASIVE DCIS breast cancer. Invasive. Hmmm. What does this word mean? The Oxford Dictionary describes it as “Tending to spread VERY QUICKLY and undesirably or harmfully. For example: ‘patients suffering from invasive cancer’.
Enough of the bullshit. Bobo said my onc is having difficulty accepting the truth that the treatment I’m doing in Germany works.
So essentially the appointment concluded with…. no MRI or monthly shots at PMH. And he doesn’t want to see me for quite a long time. He is going to Mexico for a few weeks (and not to check out cancer treatments in Tijuana because he doesn’t believe in that “stuff”) and I’m not scheduled to see him until Feb. But when I got home my appointment was emailed to me and now I’m not scheduled to see him until March. That’s 5 months away. That’s a long time.
On a positive note…no appointment anxiety. That could be a good thing. Right?
So how do I feel about this? I feel like trash. Taken out to the curbside. No one is monitoring my monthly blood work. Some gumba in Scarborough that doesn’t know how to stab me in the stomach properly to give me my 16 guage needle will be administering it for 5 months. I have no idea what is really going on in my body (neck, lungs and lower back) and if I should be alarmed. One guy says I’m fine. The other one wants to zap me. I think I’m going to get Bobo trained to give me the shot in the stomach if this CCAC thing doesn’t work out. Help!
At this point, I just want to run to Germany.
I booked one night in a castle on one of the week-ends I’m there!
The way I see it. You Gotta have Fun while you still have a neck and can walk.
God help me. I’m really feeling tired of dealing with this crappy disease.