Tuesday, February 13, 2007

Feeling better......

For a couple of weeks I have wobbled between worrying, being frustrated, been angry and putting cml totally out of my mind (ok, ok - I tried anyway). Its been a strange couple of weeks but all in all not too bad - from my view anyway - now, ask anyone around me and you might get a totally different answer! LOL

Finally Dr J called me back. I had left a message for him last week but he was out until Monday. He graciously called back on Monday evening and I started on my list of questions....... Dr J said that the specialist, Dr K at Vanderbilt in Nashville, says that there is no need to increase Steven's gleevec dosage - keep it at 400mg and re-evaluate the results after two more PCR results in six months time. I started smiling again. Then I asked him if he was open to having the next PCR send for procesing at OHSU in Oregon - Dr Drukers lab. He was wonderfully open to this and we agreed that I would get the kit sent out and we would do the next PCR early next month - on his one year anniversary of cml.

The lab that his blood was being sent to, has no baseline PCR value which then makes it difficult to work out his log reduction. Now that the tests will be done at OHSU we will have all the information we need. And at this next appointment Steven will have a few extra tests done with the regular ones, just to check his liver function and ........ ah, its late.......... stuff.

So, after worrying, being angry and being really frustrated I now find that this doctor is more than willing to work with the specialist and with Dr Drukers team. I also find that Dr J is willing to listen and adjust and hear what I say, not dismissing me in any way whatsoever. Maybe he is not fully informed or up to date with everything new in cml, but he sure is not afraid to work with those 'above' him..... This is tremendously comforting.

I know that I have not been easy on him, and even during this last conversation we had on Monday night, I did not let him off the telephone until I had my questions answered. It really was a really good discussion.

So after e-scheduling Stevens appointment for early March rather than in May, I called the OHSU lab to get the PCR kit sent out here. What an easy process that turned out to be. The gentleman there was friendly, knowledgeable and so sweet. The kit will be on its way soon and we will have to keep it refridgerated until taking it to the doctors office. Then it will have to be sent overnight via UPS to OHSU to get there the next day. Or else. Or else it will have to be redone.........

So I scheduled an early morning appointment with Dr J and the blood draws, after which I will come home with my kids blood in a package - again, and then UPS will send it on its merry way. OHSU even has tracking numbers via email so we can see that it comes here and gets back without a hitch - or at least we will know of the hitch if it happens.... which it wont.

I have learned SO much from the Yahoo Asia Support group and everyone on there through public postings and private emails. They keep me going, keep me working at getting things running as smoothly as possible and really give me courage to keep tackling the issues that bug me. Another thing that really helped so much was that book that Lottie recommended - The Patient From Hell. He gave me the final push I needed to state clearly what I, as a caregiver, needed from the doctor, not to give up, not just to accept what was said and to pick my battles........

I know that we are all incredibly fortunate that this cml in Steven seems to be 'under control' at this stage. That does not stop me from 'scanning' Steven each time I see him, it does not stop that sudden gasp at times when 'scared' hits my stomach or that worry that creeps in when I read of some of the problems that others are having. It does not take the cml away. It increases my dreams of a real cure for all these people going through this on a daily basis, it makes me more open to holding the hands, if I can, in any way of those on this journey that need that - or just sharing my feelings in the hope that they can find some comfort - in whatever way possible.

Its almost been a year now..............

love and light

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