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Um, What ?
Apr. 12th, 2012 06:21 pmSooooooooooooo.
Yeah.
Guess what?
I DON'T HAVE MDS.
I'VE PROBABLY NEVER HAD MDS.
(Cue flailing.)
WHAAAAAATT?!???!!!
It's like this: Following all the "Holy Crap Familial MDS???" drama, I got a referral to Dr. S at the Cleveland Clinic. I had bone marrow biopsy # 5. (BTW should you ever need a bone marrow biopsy, the Taussig Center at the Cleveland Clinic is AWESOME! No IVs and THEY USE A DRILL -How COOL is that! Absolutely the BEST BMB I've ever had!) The Clinic had my records for the 2 previous BMBs (all records prior to the mid '90's are unavailable).
BMB's #3 and 4 didn't seem to indicate MDS. (Me: Really? Huh.) I recalled my original doc, Dr. C, telling me in December that the pathologists who compiled my first BMB results didn't think they showed MDS either. Dr. C said "But what else could it be?" I showed up in the ER with a hemoglobin of 3.something.
I really, really wanted this BMB, with all the nifty new testing options that exist now, to tell me that my son was not in danger of inheriting my MDS. Dr. S thought it was possible that I might have an inherited sideroblastic anemia (SA). Or the BMB might confirm MDS. OR we might "swing and miss" and get no new info. A month later I returned to the Clinic for the results.
NOT MDS.
NOT Sideroblastic Anemia.
(okay...)
Then what DID I have? What caused the severe anemia I had for at least ten years?
Answer: We may NEVER know.
My ferritin (iron) is very high; understandably so, I've received over 300 units of blood. That might contribute to my anemia. It does NOT, however, account for the severe anemia that hospitalized me in the first place (and required 4-6 units of blood every other month, for the next ten years). Yes, I did inherit beta thalassemia minor from my father. No, it is not known to cause severe anemia.
On the one hand: YAY! NO CANCER!
On the other hand: Um. NOW WHAT????
Since I don't have MDS, I'll now be seeing a "benign" hematologist at the Clinic. Dr. M wants to get a CT Scan of my liver and spleen, and is looking into targeted mutation genetic testing re: my beta thalassemia trait. We'll go from there. This still leaves me with a metric shit-tonne of capital-I "Issues" to deal with...
For example:
Why the hell did my original doc call it MDS -for 27 years- if it WASN'T MDS?!?!?!?! (Geez-louise, it's not like being diagnosed with a super rare form of cancer is at all upsetting. #sarcasm)
What do I call whatever-it-is NOW? No, I CAN'T just call it "anemia." Calling it "anemia" invites people to tell me to "just take iron/vitamins," and to assume it's not remotely serious. Why is that a problem? For 4 years prior to winding up half-dead in the ER, people told me I was "just out of shape," or "lazy," or "making it up" whenever I tried to tell anyone that something was WRONG. I don't think I will EVER get over that.
How do I just Get Over a 27 year-old, however erroneous, cancer diagnosis? It may not have destroyed my life, but it certainly wreaked a lot of damage. It was as much a part of my identity as having red hair, or being a geek. And now that's just Gone. "IDEK," I think, was coined for exactly this kind of situation.
What do I research now? What support groups are there? (Guarantee there won't be anything as awesomely useful as AAMDS.org!!!) Everything I ever knew about MDS no longer pertains to me. How do I know where to start looking for answers on my own when even my docs don't know what to call this???
Conundrums within conundrums. My life.
Wheeee?
Yeah.
Guess what?
I DON'T HAVE MDS.
I'VE PROBABLY NEVER HAD MDS.
(Cue flailing.)
WHAAAAAATT?!???!!!
It's like this: Following all the "Holy Crap Familial MDS???" drama, I got a referral to Dr. S at the Cleveland Clinic. I had bone marrow biopsy # 5. (BTW should you ever need a bone marrow biopsy, the Taussig Center at the Cleveland Clinic is AWESOME! No IVs and THEY USE A DRILL -How COOL is that! Absolutely the BEST BMB I've ever had!) The Clinic had my records for the 2 previous BMBs (all records prior to the mid '90's are unavailable).
BMB's #3 and 4 didn't seem to indicate MDS. (Me: Really? Huh.) I recalled my original doc, Dr. C, telling me in December that the pathologists who compiled my first BMB results didn't think they showed MDS either. Dr. C said "But what else could it be?" I showed up in the ER with a hemoglobin of 3.something.
I really, really wanted this BMB, with all the nifty new testing options that exist now, to tell me that my son was not in danger of inheriting my MDS. Dr. S thought it was possible that I might have an inherited sideroblastic anemia (SA). Or the BMB might confirm MDS. OR we might "swing and miss" and get no new info. A month later I returned to the Clinic for the results.
NOT MDS.
NOT Sideroblastic Anemia.
(okay...)
Then what DID I have? What caused the severe anemia I had for at least ten years?
Answer: We may NEVER know.
My ferritin (iron) is very high; understandably so, I've received over 300 units of blood. That might contribute to my anemia. It does NOT, however, account for the severe anemia that hospitalized me in the first place (and required 4-6 units of blood every other month, for the next ten years). Yes, I did inherit beta thalassemia minor from my father. No, it is not known to cause severe anemia.
On the one hand: YAY! NO CANCER!
On the other hand: Um. NOW WHAT????
Since I don't have MDS, I'll now be seeing a "benign" hematologist at the Clinic. Dr. M wants to get a CT Scan of my liver and spleen, and is looking into targeted mutation genetic testing re: my beta thalassemia trait. We'll go from there. This still leaves me with a metric shit-tonne of capital-I "Issues" to deal with...
For example:
Why the hell did my original doc call it MDS -for 27 years- if it WASN'T MDS?!?!?!?! (Geez-louise, it's not like being diagnosed with a super rare form of cancer is at all upsetting. #sarcasm)
What do I call whatever-it-is NOW? No, I CAN'T just call it "anemia." Calling it "anemia" invites people to tell me to "just take iron/vitamins," and to assume it's not remotely serious. Why is that a problem? For 4 years prior to winding up half-dead in the ER, people told me I was "just out of shape," or "lazy," or "making it up" whenever I tried to tell anyone that something was WRONG. I don't think I will EVER get over that.
How do I just Get Over a 27 year-old, however erroneous, cancer diagnosis? It may not have destroyed my life, but it certainly wreaked a lot of damage. It was as much a part of my identity as having red hair, or being a geek. And now that's just Gone. "IDEK," I think, was coined for exactly this kind of situation.
What do I research now? What support groups are there? (Guarantee there won't be anything as awesomely useful as AAMDS.org!!!) Everything I ever knew about MDS no longer pertains to me. How do I know where to start looking for answers on my own when even my docs don't know what to call this???
Conundrums within conundrums. My life.
Wheeee?
