Well, so much for the possibility of good things. Markers jumped up 8 points again, so now we have officially spent thousands, once again, for nothing. We knew this was coming. I know the signs in my body when cancer is on the move and is not calming down. Even though I kept mentioning this to the powers that be, I kept being given the party line that “since we are stirring things up with the cytokines, sometimes you won’t see results till after you leave and things settle down.” That’s all well and good for the typical patient who hasn’t been walking this path for as long as I have. I know my body, its strengths, and its limitations by this time.
Here, they don’t know me, but they keep claiming to know all about me. Whatever that means. Now, in my experience, when treatment isn’t working, I have never needed to go beat down my doctor’s door to discuss a change. He’s usually the one chasing me down the hall as I run, screaming, away from conventional oncology. But, as I have already figured out, this place is certainly out of the ordinary, but I don’t think I would say that in a positive way.
We were aware that treatment was not working. My body is starting its slow decline … my tiny appetite is dwindling further, my belly is filling with fluid, my butt is disappearing. Yeah, I know the signs alright. Oh yeah, and those ever-increasing tumor markers that have increased by about 30 points in a month. So, we decided we needed to go about approaching a treatment change in a very methodical manner. We know that nothing changes quickly here, so we started in advance, in order to make things go as smoothly as possible … or that was the intent anyway.
There is a local oncologist to whom the clinic refers us if we need an opinion. So we arranged to see him last week knowing we needed to change. We got his drug recommendations and thanked him. Then we arranged to see one of the MDs on staff here Monday, to present these suggestions to him. He thought they made perfect sense and would be an easy change to make. He said it would be done for my chemo Wednesday (yesterday). Then we arranged to see the other MD on staff on Tuesday to go over labs, just in case I had that drop I was expecting … and since I didn’t get that drop, the change needed to be implemented. She said it was already done.
Then, John was in the lobby and I was outside talking to some folks, when the director walks past. He stopped and told each of us, separately, that he had the Taxol, Carboplatin, and only had to figure out the osmolality of the Vit C and it would all be good to go as soon as he returned from a meeting. We left feeling pretty decent, but I was still apprehensive given the track record here.
Yesterday, we came in and asked the nurse, first thing, what drugs were on tap for me. He said the same as always. Uh oh. Here we go … this is the crap that happens. I’ve seen it happen when patients were in their hypoglycemic moment and that was not going to happen to me. So we asked first thing and found the change had not been made. We told the nurse that there was a change and he said he would check on that. For the next three hours, we waited to hear that it was resolved, but every time we asked, they were still trying to figure things out because now there seemed to be a discrepancy between what the oncologist recommended and what we were asking for, but that was not the case. We had already laid all the groundwork with three different physicians.
Finally, my IVC was done and it was time for chemo. Since I was still fasting, and no one knew anything, John went up to his office to see what the hell was going on. Turns out the guy totally dropped the ball and didn’t calculate my dosage. WTH????? I finally got my chemo about 2:15 … fasting the entire time. So let me get this straight … you have nurses calling you for three straight hours about Buhmeyer’s chemo dosing and somehow it escapes your attention? And he says that I’m just used to have doctors to whom I can dictate … emphasis on that word from him. That was a very telling statement on many levels. First, he thinks I’m a dictator and secondly, he thinks when a patient brings him some research or a treatment she’d like to consider, that is dictating. To me, that is collaboration. I am used to practitioners with whom I can collaborate … healers who are interested in learning new things and doing the very best they can for each and every patient as an individual. This guy thinks we’re all just a bunch of sheep sitting back here and we’re all the same.
He is the biggest bottleneck in this clinic. He makes assumptions about his patients and lumps them all into one pain-in-his-ass and that is not the mark of a healer. In my opinion, this man is not interested in healing. If he is interested in healing, but looking at new stuff is just not his thing, then he needs to hire someone with whom we can collaborate. Someone he can empower to help us and not tie all the nurses’ hands.
If you go in there with a question or suggestion, that becomes the patient telling him how to do his job, etc. We are a threat to him. But why is that? To me, the earmark of a great doctor/patient relationship is the ability to freely share thoughts and ideas, always working toward either extending, or improving quality of, life.
This clinic could and uushould be a huge jewel in the South’s crown. The only affordable clinic in the country … and I guess you get what you pay for sometimes.
But we did get that treatment change … took much yelling and tears but we got it. The question is, at what price? I now have straight IVC without any vitamins or minerals in the bag. I have taxol and carboplatin instead of cytoxan, 5FU, methotrexate. I have glutathione and ALA by IV.
I may get well here. I may not. But if I do, it is not because of this guy … it is more in spite of him. I just find it sad that even the local practitioners know how this place operates. That the patients have to try to find a way to get what we need from this place. And despite of his delusions of kum bah yah in the infusion room, we all know we have to fight for every little thing here. The question is, in my case, is it doing more harm than good? I see that nothing here is really going to change. Only time will tell if I can get better here or not.