It's been enough to drive a gal batty....
One of the fascinating (sic) realizations that has come to me is that this
what shall I do? slog could go on and on
and on. Ad ridiculum (sic). Not a heavenly chore for wellness, which is returning in growing centeredness as of this morning.
The short and sweet: After endless deliberation and investigation, I shall continue my healing path at
UCSF Medical Center in San Francisco, who are on
The List which took so many hours to uncover as being a "Center of Excellence" (COE) for an allogeneic bone marrow transplant (BMT). The "who's on
first?" jugglefest of which insurance HIPAA policy has been given to Blue Shield of California.
Unlike my erroneous comments a few posts back, the "auto vs. allo" game was not so much the issue as was finding the appropriate medical facility. Alta Bates can put me through the chemo mill (e.g. Induction and Consolidations) indefinitely, but it has taken far too many calls to determine that the three major insurers I was grappling with have virtually the same list of COE's and Alta Bates is not on them for a BMT. Now they have done a few over the years! Now and then. Mostly "auto." I wanted to know if my "allo" would be covered, without continued examples of the 2nd rejected appeal to Blue Shield that already took place. Simple question, you would think? Ask the hospital; ask the insurance company. "Fine. Blue Shield doesn't like you. Will the other two absolutely agree to this?"
It's been Convolution Central. It took Herculean determination and effort to discover that The List of COE's includes such known centers as City of Hope and Cedars-Sinai in L.A., Fred Hutch and UWMC in Seattle, M.D. Anderson in Texas, Stanford and UCSF here in the Bay Area. No one will assure me of the coveted pre-authorization today. But the next steps can be taken with its likelihood at least in this ballpark rather than a distant galaxy. UCSF has a stellar reputation. I have an appt. with one of the top oncologists there next Wednesday.
Umpteen oodles of energy were expended on the insurance question, namely, "Which one?" For a HIPAA policy, there were enough across the board similarities that I came to feel that a coin toss could be a reasonable solution. I had Overnighted an app for Anthem Blue Cross to the agent last week, which I asked him to hold as the gathered information changed daily. My friends and I were working our butts off since Blue Shield had told me on the phone that my Dec. 11th application to them would be returned because I'd sent it in too early (!?), leaving me that questionable perk of having options. I should start having nightmares about details no one ever thinks about in regards to their insurance policy. The clock was ticking. The returned app remained MIA, which I found distinctly annoying. Blue Shield was still an option, but where was my paperwork? Never mind, must keep digging and calling and checking websites and...
You see it coming, don't you?
Last Saturday, two fat packets arrived in the mail, with a Welcome to your new Blue Shield policy! brandished across them both. Little ID cards accompanied one. The bastards! I was torn between outrage at being told one thing and given another.... with relief. I was looking at an insurance policy that had been approved and was in my hands.
My 11th hour flusters included determining that I could cancel this policy for any reason and at any time. That left Aetna and Anthem Blue Cross still in the running. More calls, particularly to UCSF, attempting to discern the insider's edge on who did the best job paying the bills. More mental mud. I began to revisit the belief that no matter who I chose, they'd both do their job and also be complete idiots, probably simultaneously.
In the realm of codependency as well as attempted consistency, I wanted Dr. K at Alta Bates to really believe that I was loyal. I uncovered aspects of my character weaknesses that illumined an old tape that said, "You made this choice; don't leave. They won't like you." Judging myself for my life's past inconsistencies and lapses of commitment was eroding my ability to be sensible as well as intuitive. This discomfort crept into two visits before I made the final decision for UCSF. That I might not stay at Alta Bates was in the air. One up/one down was tiptoeing into the interactions. My experience of 'Diane the empowered patient' was becoming more erratic. I didn't like feeling this although I was grateful I was becoming aware of it.
Breathe. Pray. Ask. Journal. Jog. Ask for help. Repeat.
Ironically, since I'd applied to Blue Shield myself, that left out the
agent. It took a bit of squirming to get over it. I told him that I had to draw an intelligent line or risk my energies sinking into a quagmire, and thanked him for all of his efforts. He was gracious.
At $733/month with a $2,000 deductible and $6,000 out-of-pocket annual cap, Blue Shield is the most expensive policy. The others' premiums were $563 and $688, with lesser deductibles of $1,500. But unlike a you're so healthy we could sing underwritten policy, with an unlimited lifetime cap, this Blue Shield HIPAA plan topped at $6M (that's million) versus the others' $5M. If I live through this and past this, that extra million WILL come in handy. Treating this leukemia will wind up costing millions I don't have if I live long enough. And goodness knows that I still have my unpaid work cut out for me in making sure that the bills that have already come streaming in and the insurance company's obligations are fair and square. Now that part really pisses me off...... "Ees not my yob, mon!"
Early L.A. sobriety taught me that the answer to "It's not fair!" was some cranky old-timer responding with, "The Fair is in the Spring, in Pomona." And now I'm hoping to become an old-timer myself. The cranky part I have already wired.
The good news is that I have finally made two decisions and can.... exhale and collapse! I can move forward rather than around in circles. More good news from earlier is that my lab work counts are starting to move up. At my last visit on Monday, I needed neither a platelet transfusion nor a Neupogen shot. I think this Friday's CT scan is still on. The Inauguration Day bone marrow biopsy is a question mark since I'm shifting from one medical center to the other and don't know how long that will take. But as my friend said, I'll probably go for the
Oxycodone. It makes me a space brain and it does the job. As an example of the counts, from Friday to Monday (it was a great weekend in freedom!) my WBC went from 1.3 to 3.9. The ANC (absolute neutrophils) went from 789 to 3140. Some might recall that I was "shooting for a thousand" on both. Yes, I was released with marginal numbers... and thanks be to God for that!
I celebrated today by having my first
voice lesson since the diagnosis, meeting with my Spiritual Director and then attending Mass at
Incarnation Monastery up in the Berkeley hills. One of the attendees whose name I'm finally remembering began to ask if anyone wanted to go out for dinner. My isolator was out back as I responded with an unhesitant "Yes!" Three of us went down to Shattuck's Gourmet Ghetto and ate at Cha-Ya, a heavenly vegan Japanese restaurant (and I'm not a vegan). We gabbed and feasted.
It's been an especially good day.
I am in shock and mourning at the loss of a good friend from one of my California spiritual communities. That is all I shall say now.
I think I can I think I can I think I can...
Since I wrote on Thursday, the insurance information has changed on a nearly-daily basis. In lieu of writing bits and pieces, I am awaiting some manner of resolution and clarity. Attempting to arrive here has included but not been limited to three people - Chris, Alice & myself - expending no less than 100 hours over the past 2 weeks. Chris & Alice have been the stalwarts in this regard, although I too have been buried or at least felt buried. The insurance agent has thrown in easily another ten hours. Without a manner of healthy detachment, simply acknowledging the insanity portion of our show threatens to throw me into a tailspin. Occasionally it begins and then I breathe while I try to pull out of it. 
It all sounded so good and reasonable.... until now in the 11th hour there are clear insurance company pre-authorization designations between an "auto" (autologous) versus an "allo" (allogeneic) bone marrow transplant. Briefly, "auto" is from your OWN marrow cells harvested pre-chemo; logically, "allo" is not - whether a sibling, parent, cousin or unrelated donor, it's from an Other. 
As a recovering perfectionist and control freak, I suffer with making really Big Decisions. And yet I am savoring having drawn a psychological boundary, wrapped this corner of the insurance madness admin and Express Mailed paperwork to an insurance agent (inadvertently linked awhile back, babbling about my soon-ending Cal-COBRA policy) for a HIPAA policy with Anthem Blue Cross. I'm telling the parts of me that could research this ad nauseum to take a deep breath and let GO. After awakening this morning with a pounding heart, something that's never happened to me before (OMG! The chemo nailed my HEART now!), I realized that I've done all I can and it's time to take a soulful breather before choir practice tonight. I will suck the life force out of my wounded immune system with this amount of stress.
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