The Latest Doctor Update

I've slept most of the day, exhausted from a very busy week indeed.   Those hospital folks keep you on a tight schedule!    I finally couldn't stand the smell of the bedsheets anymore (due to the night sweats) and so I'm up as the sheets are being washed and dried.

I went on a walk at the nearby trail near Richard's house.   I have a yellow fluffy cat friend who meets me on the trail walks about 10 yards with me, plops himself down in the sun to wait for my return, then he'll walk back to whence he began with me.   It's a kind of casual saunter and I think that the two of us enjoy the company.     While some days, it's a struggle to motivate....walking outside I think is a key component to healing and I don't really care how strange I look as I swing my arms around or take a paschima namaskarasana or an arm gomakonasana as I slowly walk down the trail.   What I notice the most is the speed at which most people are moving.   Everyone seems to be pushing themselves....walking fast, jogging, bicycling....we are a perhaps a culture of speed freaks (myself formally included).   This illness has slowed me WAY down and I look at it as God's gift to literally stop and smell the roses (though I have to do it from a distance cause my neutrophenia requires distance from plants).

Yesterday, my blood count was low again---which was no great surprise to me as I have noticed that I get the blank tv sound buzz in my head when my blood is low.    So yesterday evening I got another platelet transfusion and am feeling a bit better.

The serious conversation with Dr. Done went as expected I suppose.   She was my admitting doctor who talked to the Santa Fe doctors and will be my doctor in June.  (They switch off one month at a time).     What amazes me the most about the doctors I've dealt with at the Fred Hutchinson clinic is their amazing directness, clarity, and communication skills.    They are, in some sense, better yogis than a lot of people I know.   They look you in the eye and they tell it how it is.

Dr. Done has been at Fred Hutch (as everyone here calls it) for years and has had 100s of cases of Aplasia (short cut for Aplastic Anemia) unlike most doctors who might encounter one or two cases in their entire careers.    She is in her mid-fifties to early sixties and one gets the feeling that she is one tough cookie whose been around the block a few times.   I am pleased that she will be the attending doctor in June.

So here's the deal:
1. I fall into the VERY severe aplasia category.  "Your bone marrow is basically empty."
2.  They can't start any kind of treatment until my infections clear up which might take up two weeks or more since I have almost no white blood cells.   I am on the big BLUE horse pills of very high intensity to clear the infection in addition to hormones for the bleeding to stop and antiboitics of various colors and flavors.   For someone who never liked to take pills, boy the irony is obvious.   And this, she assured me, was just the beginning in the pill department.
3.   In her opinion, ATG is unlikely to work for me due to severity of my aplasia.    It takes time for the cells to grow and I have such few cells that she doesn't think that it will work.
4.  It takes about 3 months to see if ATG will work.
5. "60% of severe aplasia cases are dead within 4 months without treatment"
6.  If she were me (I asked the question),
  a.  she would formally register in the bone marrow donor worldwide database immediately.   (My response was:  WHAT?  I'm not already registered)
  b.  she would call the bank and find out, based on my tissue type, how long they think it might take to find a donor.   The other doctor suggested that I have a common tissue type.
  c.   the ATG treatment before a non-donor transplant is the prescribed standard of care that the hospital generally recommends.
  d.   i am an unusual case (of course) due to my recent exposure to hep a and here's the kicker elevated levels of lead (for certain) and possibly arsenic and gold most likely from the aryuvedic pills I took in India (read this as a warning people).   They know for certain that gold can cause aplasia.   The arsenic and gold tests should be back soon.
 e.   if the bone marrow bank thinks that they can find a donor soon, then i might just skip the ATG part....if the team of doctors that meet next Wednesday agree.    She was very clear here....while everyone tries to remain unbiased in their recommendations, there is always bias and if they are going to think "outside of the box" with regards to my case, they prefer team consensus.     I'm all for that.  Call them all in, as far as I'm concerned.
f.   they prefer me to stay out of the hospital as much as possible, but if I need to be there, they will admit me.

So it's a bit more waiting it would seem.   This is both a blessing and a curse.    I still hope that the essential oil regimen I'm on will kick in any day now.   I still have at least 10 more days for miraculous healing to occur.   The option at the end of the tunnel is, well, not very rosy at all.

Somebody asked me about my strength today.   My physical strength varies with my blood levels.  My inner strength mostly remains consisitantly strong.   I want to live.    The person responded "If you can maintain inner strength, you must be truly amazing."   My response is this:  when you are in my shoes, there is not much else besides acceptance and a healthy dose of pragmatism.

BKS Iyengar was kind enough to email me regarding a sequence question I asked him.  Beyond the technical practice information, he wrote:

"As you are afflicted you have to accept this with calm mind and work on alternative means to improve. You may have to stick to yogic discipline as well as take the support of modern medicine. Yoga does nullify the bad effects of drugs. So stick to practice."

More pragmatism. 

My address will be changing in the very near future so please do not use Richard Schachtel's address or contact information from this point forward.   I'll let you know what the new info is as soon as I confirm it.

Thank you all for your continued support and God Bless.