The entire drive out to Duarte, my stomach was doing flips. I was anxious, unaware of what I really was about to see. My doctor had told me he just wanted me to visit with one of the best Hematologist/Oncologists in the country. One who has done the most stem cell transplants. So I agreed, at least for a second opinion from one of the top doctors.
When we arrived, I was immediately depressed, seeing tons of people walking around, in various stages of health. Some missing some of their hair, some all of it, and some with face masks on. All were wheeling around their IV drip with them - their "life-line". Oh my greatness, this was unreal. I don't belong here. I'm not one of them. This is a mistake. I wanted to leave right then and there.
My husband parked the car and we headed into the information desk. The gentleman there was kind and lead us to a waiting area, which we were swiftly called into a small office. This woman was handing me paperwork to sign, taking co-payments, and then hands me a wristband to place on my wrist.
"I'm just here for a consultation with the doctor, right?" I asked incredibly nervous with the whole situation. It felt like I was being admitted into the hospital!
"Correct. That's just for identification." she said.
I gave my husband a timid glance, and we continued on with the paperwork. She handed me a huge folder of reading material and then my own badge to use "each time I come in". Holy shit. I'm not coming back here lady (I wanted to say to her).
She then calls for a volunteer to guide us to the lab so they can take my blood tests. Ok, normal enough. With all my recent hospital and doctor visits, I've become quite the pro at blood tests. You wouldn't even know that before all this, even the thought of needles would have me feeling woozy.
I head into the lab and they take a couple vials of blood. Then guide me back to the waiting area for another volunteer to give us a mini tour. Mind you, there are still gravely ill patients walking around, with hopeless looks on their face. I can not even begin to really describe the magnitude of sadness I felt at this place. I wanted to grab each and every one of them and scream, " You do not have to do this to yourself! There is another way!!"
So off we went, where we were shown we would come back at 1:00pm for my appointment with the doctor. We had about an hour to kill, so we went to the bistro and got some snacks and drinks. I chose a table outside, because it was the least sad place to sit for an hour. We make our way back to the waiting area, and I'm called back to talk with the doctor.
When she entered the room, she seemed quite cold. She basically said that the test showed exactly what my doctor had told me, MDS. She said I was in the intermediate group, and that we needed to test my brother to see if he was a match for me for a stem cell transplant. In the meantime she wanted me to start on some medicine. I asked her point blank, "Is it chemotherapy?" And her response was very passive, "well, not exactly, but kind of." What in the hell? Either it is or it isn't. I glance at my husband in aggravation. We mention to her our concerns about my breast implants. That the toxic chemicals in them could be contributing to the MDS or hindering my immune system from fighting. She wasn't convinced either and sort of passed it off. At the end of our visit though, she said that if I wanted to have the implants taken out, I needed to do so within the next 2 months.
As we were finishing up, she said I needed to go back to the lab to do more blood work to test my HLA type so they could match me with a donor. What in the actual hell. I wanted to leave as fast as I could. I argued with my husband, on the verge of tears that I was not going to do another blood test and I was not going to have the stem cell transplant, so this was all a waste. Looking back now, I was on the verge of a serious panic attack. He assured me, that I needed to just do this last blood test and we'd leave.
I sat there so uncomfortable in my own skin, wanting to run from this place. This "hopeful" place was the last place I would ever tell anyone was filled with hope. I felt defeated and not in control (and I HATE not being in control). Finally, they called me back for the HLA typing blood test, and then I was out of there.
So relieved to be done with that visit, promising myself I never wanted to go back there.