Wednesday, August 18, 2010

You Can't Make This Stuff Up--Amended

I've been calling my health insurer trying to get some explanation regarding a claim for reimbursement for mileage and some costs for my donor. The claim office says "call the transplant center". The transplant center says, "we don't handle claims, call the claims center." Today I finally get someone who will talk to me. After much cross examination by me I learn that in fact my claim has been processed and a check has been issued. Fine, so I ask, "to whom was the check made payable and where was it sent." The answer: "the check was made payable to 'Transportation Meals and Lodging' and it was sent to [the insurer's] PO Box in California." Naturally I asked if she had a phone number for this 'Transportation Meals and Lodging' fellow as he had my check and I wanted it back. No such luck. But she has initiated an "investigation" to determine just what happened with my claim and check.

I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.

Monday, August 16, 2010

The nose knows

My counts remain stable. Although still low, my white count has been stable enough these past 2 weeks (2.7 today) that I've avoided the neupogyn shots. Red counts and platelets are also stable. My very low dose revlimid maintenance regime (.5 mg every other day) seems to be working and allowing my counts to recover. They'll check the myeloma levels next week (results in 2 weeks). Health insurance has approved my donor lymphocyte infusion at MD Anderson so Mike and I will be returning to Houston soon for a week or so of workup and yet another infusion of Mike's cells.

Having lost my hearing and my sense of taste, I've now begun to suspect my sense of smell is also impaired. It has taken some time for me to realize this but, I haven't been able to smell the wonderful meals Susan is constantly preparing. And yes, Rifkin confirmed today that all the chemicals I've received can obliterate one's sense of smell. He asssures me, it "usually" returns. He's said the same thing about my neuropathies and rather than improving they are getting worse. We are experimenting with more neurontin but have not yet found the right dosage to relieve the pain. Fortunately I can ride my bike because I find I don't like to walk as my feet start throbbing and tingling after 10 minutes. As for the loss of smell and taste, I find that I am driven to tastes on the edges, like spicey and sweet. Now I know why I told Susan the other day that I was tired of chicken--too bland. So tonight we had hamburgers with jalapenas in them. Yes! Of course this diet complicates my digestive issues.

While I make fun of the loss of smell, it is a serious issue. It presents life challenges, such as not being aware of dangers such as gas leaks, fire, or spoiled food. Having now researched the risks I just realized that I've had this problem for awhile and it seems to be getting worse. Over the past 2 years I eaten some bad meat, which made me quite sick. Julia and Susan chewed me out after each incident for being so stupid. In fact, they have been quite diligent in throwing out any cold cuts that might be old before I can get my hands of them. My awareness is now heightened but I do hope this follows the "usual" course as Rifkin suggested and goes away soon. Not being able to fully appreciate Susan's cooking would be quite a loss.

That being said, I continue to feel and believe that we have turned a corner here. These issues are minor given the minefields we've been through. I can live with this stuff.

To life,

Wednesday, August 04, 2010

That Brain Thing

Mention you're having a brain scan and you get people's attention. I'm not sure if it's out of concern or interest if they'll find anything in this skull. Well, the answer is they have located my brain and it's where it's supposed to be. Second, there is nothing in the scan that would explain my dizziness, vertigo, or loss of hearing. Third, and perhaps most surprisingly, my brain is "normal." How many of you readers have scientific proof your brain is normal? Yeh, I thought so---not many!

I naturally have my own theories as to those ailments: The dizziness and vertigo are due to my drugs, primarily the antifungal drug, which I've had trouble with in the past. The loss of hearing is likely due to the extensive chemo I've had. My doctor even asked what I thought was causing the dizziness and vertigo and of course I told him. I don't know whether he's adopted that diagnosis. As Susan said a few years ago after an exam where I charted my future treatment and my doctor agreed, "the inmates are running the asylum."

But the hearing is improving. The loss has moved from profound on the left and severe on the right to between moderate and severe in both ears. A bit more improvement and I'll probably be able to get along without hearing aids. They were quite surprised by the significant improvement in the left ear, particularly.

White count continues to languish. I now need a neupogyn shot every Monday as I am neutropenic every week when I have my blood checked. Neutropenia is the condition of abnormally low neutrofils, which are the circulating white blood cells that serve as the primary defense against infections by destroying bacteria in the blood. Because mine are so low I have to limit my exposure to crowds, children, pets and other potential sources of bacteria/virus, fungus (like gardening, for example). W.C. Fields had much to say on this subject: "anyone who hates children and animals can't be all bad," and "children should neither be seen nor heard from-----ever again." But I digress. Staying out of the sun, out of the pool, out of the garden, away from crowds, not drinking wine, my god, I might as well be a monk!

But despite these issues and a few more (like these awful neuropathies) I continue to feel like we've turned a corner. My anti rejection meds have been further reduced and I'm back on revlimid, although just every other day since that will cause further reduction of my white count.

Best wishes to all.