9/24/13
Big day today. I have an appointment with Johns Hopkins Derm Doc. I see (on their great site where I can look up all my stuff) that it's scheduled for just 15 minutes (previous appointments have been 1/2 hour). I assume that, in her mind, the visit will be quick. She will take a look at how I am (she hasn't heard from me, so she will expect no surprises) and then go over the treatment plan which is to go onto Methotrexate (MTX), the next drug, and phase out Prednisone, the current drug, over time. We've already discussed this. So nothing new will be expected by her. Except, what she doesn't know. My plan is quite different: to go off all prescription drugs - (Prednisone - pills and Triamcinolone - steroid cream). I want to go all Natural. So this will be interesting. My objective is
to get her to "go along" with my plan even if she doesn't approve. I want her on board in case things go wrong and also want her giving me the other side of the story as things proceed. She enters the room. looks at my face and says I look better and asks how I'm doing and I tell her I am doing better. I tell her from my neck to my feet, my body on one side is covered with Coconut Oil and the other side is covered with Triamcinolone steroid cream. She asks which side is which. I ask her which looks better. Looking at my legs she says this one. The right leg. Uh oh, that's Triamcinolone, but I have to agree with her. That's what I thought too. Then she looks at my arms, and then my chest and then my back. And this time, she chooses the sides covered with Coconut oil. All three sides. Just what I thought. Nature beats Big Pharma!
The Docs have reviewed the samples from the first biopsy and confirmed that the disease is PRP as reported in the second biopsy. She thinks that not having seen me, the biopsy analysts for the first biopsy (at a different lab) were not looking for something less common. If I understood her correctly, the Johns Hopkins docs were directing those at the second lab to look for something different and found PRP. Next the Doc reviews her plan to go onto Methotrexate (MTX) and phase out Prednisone. Prednisone is a drug with side effects that limits the duration it can be used safely. I already knew from discussions with my new primary Doc that MTX was safer, having a long history in treating rheumatism. So up til now, there are no surprises in this meeting. But, then I told her my plan: to go off both the Prednisone and Triamcinolone. My pitch is -- I'm doing better and I want to deal with this Naturally. She has no problem in my going off Triamcinolone and going all Coconut oil and says that the main thing with the creams is keeping the skin moist which both do. So I am happy to hear that. But going off Prednisone and not going on MTX is a different story. If I am better, it's just slightly better and the skin is vital to overall health. I agree with all she says and say let's go Natural, but watch it closely and if this doesn't work we can proceed with her plan to go on MTX. I look her right in the eye and tell her what I truly believe "this is going to work". I want to assure her.
She then asks about my visit with the Urologist Doc. I tell her we are going to do nothing now, but in 3 months we'll re-check my PSA(a now elevated and possible, but unreliable, indication of prostate cancer,). I tell her that I think he hopes to see the PSA go down as the skin rash is cleared, removing the fear of cancer. This doesn't make sense to her and from this and previous discussions with her, I have the impression that she believes there is the strong possibility that the underlying cause of my PRP is cancer. And, if so, she would like to see it cured so she can then cure the rash while the Urologist Doc has the opposite order in mind. For those of us who deal with computers, this sounds familiar. It's like the software guy saying the hardware is the problem while, you know, the hardware guy says its the software. I bring up the fact that I had an urinary track infection and antibiotics and maybe these things, while a couple of months ago, may be the cause of this and the elevated PSA reading. The fact is, none of us really know what's going on here and I'm glad to see she is willing to recognize the different possibilities. And here is an important side comment: we go to the doctors looking for answers they don't have. They in turn are trained to give answers and take charge and, I believe, they think they know what they don't know. They are no different than the rest of us. so I'm not criticizing them at all. But for me, what is profound is the statement "It ain't what you know that's the problem, it's what you know that ain't so". There is nothing more important than keeping an open mind and yet nothing is more difficult. Often, the information we need for a correct decision is just not there, but we must proceed. This is necessary and OK as long as we keep an open mind so we can evaluate and change course as new facts present themselves.
The Doc then asked me about getting a colonoscopy (which I've never had). I said I understood (from talking with a nurse practitioner friend) that if I took 3 fecal smear tests with no blood I could avoid this. She tells me I should have brought this up and resolved it with the Primary Doc. (A bit of tension here on who was to do what.) Not eager to have a colonoscopy, I've not pursued this. I am willing to proceed if the Docs push, but want, in that case, to do the fecal tests first to, hopefully, avoid the colonoscopy since it's invasive with risks, however remote, as is any intimate encounter with an hospital. She then asked what I planned to do as far as dealing with this Naturally. Anticipating this, my plan is to be very limited in what I discussed with her. I see no value in debating the value of Alternative versus Conventional medicine with her. I have great respect for her and other good Docs. They devote their lives to a great cause, healing people, and in the process go through a long and arduous training process. But they are not trained in the Alternative medicine approaches. So, I do not expect her to know what I know about Alternatives. I am much older and have had years to study, think about and experience the issues involved in Alternative medicine. I want the best of her thinking in what she knows and I'm getting that. It is my job to sort it out and choose between the two approaches, not hers. What I tell her is "mind stuff" alluding to the mind body connection which is well recognized by conventional medicine these days -- I mention meditation.. And exercise which I have gotten away from while dealing with this disease. Also I plan to maybe look into acupuncture. And of course diet. Now my diet is already great but what I'm going to be doing is far more rigorous and I didn't get into that with her because I saw no need to and I will tell you the details tomorrow. But, here, I hope, is the "Killer App" -- My Naturopath Doc tells me that in the Naturopath world, skin problems are a result of an unbalanced gut (GI track). What excites me here is that, if this is true, we will be addressing the cause of the problem not just the symptoms with an arduous plan to clean out and restore balance to the gut. Not surprisingly, the Doc told me she could not endorse my plan of action. I told her I wouldn't ask or expect her to do that. But, and this is huge, she says she will agree to do a phase-out plan for the drug if we closely monitor and schedule a revisit appointment in 8 days and she wants me to do the blood workup necessary for going on MTX later if we so decide. I readily agreed to both of these conditions. We have a Deal!
I'm sure this meeting wasn't what the Doc expected and perhaps disappointing for her. Good Docs want to deliver a good product. One they believe in. And yet, from their standpoint, the patient can easily prevent this by not "cooperating", and I would find that quite frustrating in their shoes. As for me the surprise was the depth and content, more than I expected. I've tried to capture it here. But, as you know, in these visits your mind is thinking of the implications of the last thing the Doc tells you while you are being told the next thing. I have the experience and time to be focused on this in a way that most people do not. For others, perhaps most, I can really see, now the benefit to having a clear headed experienced "patient advocate" along in situations like this when important decisions are to be made and a number of issues must be weighed. There is so much to absorb, think about, evaluate and decide.
So, wrapping this up, let me tell you, I felt really good as the meeting ended. It couldn't have gone better. And as it ended it did so in a way that quite moved me. As she walked out the door, the Doc turned and said "I really hope this works out for you. Keep me informed". I replied "Thanks, I will. I really want to keep you on board with me!".
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