I pursued the logistics of a second opinion yesterday, doing more web research and phoning Georgetown's Bone Marrow Transplant Unit to ask why marrow.org lists them as "inactive." After speaking to an RN and even a physician, I learned that they are the only D.C. area hospital actually harvesting bone marrow but do NO transplants. George Washington does not have a BMT unit, NIH only runs selective clinical trials, and Inova Fairfax has a fledgling, low-volume program that only performs analogous BMTs. So, if you are a D.C. metro area resident in need of an allogeneic BMT (or wanting a more proven and accredited analogous program), you have to move within 30 minutes of Johns Hopkins or University of Maryland Baltimore or come on down here to VCU (ranked #14 in the U.S.). Who knew that with all of the top-notch, prominent hospitals in D.C. that no comprehensive BMT programs are available? I am stunned!
This news torpedoes our thought of returning to our familiar NoVA area community for my BMT and solidified our decision to stay here at VCU near our Williamsburg community for my allogeneic BMT. Joe, Carolyn, and I are still pursuing the logistics of getting a second opinion about which BMT is best suited to purge my lymphoma. I cannot travel up to Hopkins but will they consider a skype conference after receiving my file?
Another offshoot of this new information is that we are heightening our Richmond real estate debate. Purchase or rental? Do we want the hassle of property management after my 30-minute tether to VCU is released? Where? How big? Many options exist and we are having fun considering the possibilities. San Fransisco and UCSF remain in the offing for summer 2013. Will I be re-inoculated with my "baby shots" by that time? Probably not. I'll be driving across country (masked when out of the car) without the advantage of vaccines protecting me from polio, chicken pox, measles, mumps, rubella, and all that other fun stuff. Nonetheless, if I am in "maintenance" phase, I already have a preliminary "okay to go to California" from the head of the BMT unit. So, San Fran living is still in the mix. It might certainly be a welcome gift after what will turn out to be a 2-year health journey!
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| Departure confirmed! |
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| All tricked out in room 132 |
Communicating via multiple venues (and a return to a state of sleep disruption and deprivation) has caused me to miss blogging an important piece of news. Saturday's MRI confirmed the disappearance of my physical symptoms in my cranial nerves. "Abnormal enhancement in the region of left cavernous sinus is significantly decreased since the prior study. The size of the enhancing tissue in the sella is also decreased ... and consistent with improving lymphoma." I'll take it! A "partial response" is in hand after round 3 of my 6 chemo treatments!
11 comments:
Yeah for decreasing the lymphoma presence!!!!!! I love those mid-cycle results that confirm the benefit of all that (let's be honest here) systemic poisoning. Mom lost her fingernails in one of her chemo treatments. They do grow back, albeit slowly!
UCSF does have BMT, right? Have you considered the possibility of going on to SF early and doing it there? If you are going to be incancerated anyway, you could start and Finnish the whole process there. The drawback, of course, is Joe has to pack out by himself.
You are doing such an amazing job of keeping yourself engaged in your care. I now this sounds cliché, but you are truly inspiring.
I hate autocorrect sometimes. Those were supposed to be 'finish' and 'know'. Or maybe I just need to learn to edit better before I hit the 'post' button!
Joe is very concerned about a few things with San Francisco. His new job will offer much less flexibility in timing and his ability to be available to me. On top of that reality, he is also highly aware that he would essentially be the only act in town; I would have no support base. Carolyn and Megan in particular would be available for the occasional visit but he would be the main act. Here, I have Sally and Rachel nearby and a lovely community of grad school and teaching/ classroom friends. I have been overwhelmed by the support and outreach, Kim! It's been terrific! Jonathan is also within a 4 hour drive and has received a generous parental gift of a car (since we can now get along with 1 in Wmsbg). He can pop in for weekend visits and be home for extended holidays! San Fran would be much more of a haul and we would not see him as often.
Megan has raised the tantalizing option of not staying at Davis for the winter term and coming here to Wmsbg to be with me. At that point, I would be done with BMT but needing regular check-ups with the mandate that I live within a 30 minute drive of the hospital. Joe would be working in Wmsbg and I would be living in Richmond and would LOVE her company! That might seal the deal!
Thanks for sharing about your Mom and her fingernails. I am ready but hopeful that it doesn't happen! Chemo IS systemic poisoning. The NYT has had many articles recently on gene profiling of cancers and targeted treatments built off of this knowledge. More focused poisoning might be on the horizon!
And YES that partial response info from the MRI is a great boost! Good to know that all this chemo is having a verifiable result!
You and Joe are absolutely correct about having a good base of support. It's a lot easier for Joe to fly back for a weekend, if this spilled over into next year, than to build a new support base in a new community. Isn't it wonderful how friends/acquaintances step up!
Megan's offer sounds absolutely perfect. My mom always said what a difference it made to have me with her. I could read her moods and intuitively discern her needs. Such communication and understanding can prove to be enormously helpful. From what you have said, it sounds like Megan would masterfully step into such a role.
I'm sorry I'm not closer. I wish I could lend more of a hand. Know that you are in my thoughts and prayers.
When you get to the BMT point, please consider me for a donor. I'm already registered in the "Be the Match" program, so maybe they can check my suitability directly.
Kim, you are an INCREDIBLE support all the way from Colorado Springs! This internet age tightens our distance and has sustained me greatly!
My donor record # is 046413. This may be helpful, I don't really know. Since 1987, I have only been contacted as a possible match once, in 2010. What more joyous experience could it be than to be a match for you!
Oh my, Kim, wouldn't that be amazing! Thank you so much! I will forward your number to the BMT coordinator :)
What wonderful news!!!
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