Diagnosis A or B. Pick One.
08.02.07 (2:59 pm) [edit]
There are two possibilities for what's wrong with me. Either I have morphea (a rare type of scleroderma) or I have morpheaform basal cell cancer. Obviously, I'm hoping for the latter. Unfortunately, from all of the credible sources I've found on the Web, neither of them match my symptoms. We've got a biopsy, though.
Morphea is an extremely rare type of scleroderma, occurring in approximately 25 in one million people per year. It's characterized by red or purple splotches that gradually turn whitish. I assure you that if I'd had red or purple splotches running down either side of my spine, I would definitely have noticed. Unlike generalized scleroderma, it will not kill me. That's a plus. No one knows what causes it. It's not hereditary.
I don't even want to talk about morpheaform basal cell cancer. Will that kill me? Oh yeah. You can see why I'd prefer the first diagnosis.
I've been searching for information, obsessing, being absolutely crazy about it. Everyone assures me they would be, too, given my breast cancer diagnosis. Originally, my dermatologist had scheduled an appointment for me on August 21 to discuss the diagnosis and treatment options. This is after they rather frantically tracked me down to tell me the doctor wished to see me. It's not like I didn't make myself very available. There are two numbers where I can be reached and both have voice mail options.
I'm supposed to see Dr. Ross on the 23rd of August, so I contacted him and I'm having biopsy slides sent for his review. I started to think that was a really stupid idea and that I should just cancel the message I left asking for instructions on how to do that. My mother, my therapist, my co-workers all insisted that I shouldn't have to wait that long to find out what's going on. Furthermore, if biopsy results aren't examined by a pathologist at M.D. Anderson in advance, Dr. Ross will have no ability to make a reliable diagnosis. You know how I trust this man, so even if it's totally crazy and stupid, it will at least ease my mind to have his opinion.
Meanwhile, physical therapy continues. There are numerous places on my body, both inside and outside that have scar tissue build-up that we're trying to break down. I was surprised to find out that I even have scar tissue running from my groin to my new girl from the drainage tubes I had to have after reconstruction. Obviously, my upcoming surgery will only create more scar tissue.
Breaking up scar tissue is painful. Now there's a surprise. Has anything in the past two years not been painful? Hell no. It's all relative, though, and it's far less painful than the needles-in-the-breast episode and the whole reconstruction (so far) ordeal.
I have exercises to do every night to get my lymphatic system up and running. Then I have to use a hand-held massager to work away at that scar tissue. That's in addition to the twice weekly manual manipulation with the physical therapist.
It feels like virtually every working moment is dedicated to some sort of body maintenance or bodily healing or trying to get my records sent here and there or trying to get an earlier appointment. I could go on and on.
But I won't. I spend so much time now in my weblogs cataloging the latest events that I never get around to how I'm feeling inside these days. I guess there's not much point in examining it. I'm emotionally ragged and exhausted. I'm so stressed out that I'm barely functional. Maybe tomorrow I can think about that a little more and feel it a little more.
Right now, I'm going home to eat something and work out to manage my stress level. Manage. There's a laugh. There's no managing to be done; I'm just trying to get through this. I don't think that counts as actually coming to terms with anything.
With any luck, I'll have enough time tomorrow in between resolving more medical issues to chronicle the latest emotional debacle.
Morphea is an extremely rare type of scleroderma, occurring in approximately 25 in one million people per year. It's characterized by red or purple splotches that gradually turn whitish. I assure you that if I'd had red or purple splotches running down either side of my spine, I would definitely have noticed. Unlike generalized scleroderma, it will not kill me. That's a plus. No one knows what causes it. It's not hereditary.
I don't even want to talk about morpheaform basal cell cancer. Will that kill me? Oh yeah. You can see why I'd prefer the first diagnosis.
I've been searching for information, obsessing, being absolutely crazy about it. Everyone assures me they would be, too, given my breast cancer diagnosis. Originally, my dermatologist had scheduled an appointment for me on August 21 to discuss the diagnosis and treatment options. This is after they rather frantically tracked me down to tell me the doctor wished to see me. It's not like I didn't make myself very available. There are two numbers where I can be reached and both have voice mail options.
I'm supposed to see Dr. Ross on the 23rd of August, so I contacted him and I'm having biopsy slides sent for his review. I started to think that was a really stupid idea and that I should just cancel the message I left asking for instructions on how to do that. My mother, my therapist, my co-workers all insisted that I shouldn't have to wait that long to find out what's going on. Furthermore, if biopsy results aren't examined by a pathologist at M.D. Anderson in advance, Dr. Ross will have no ability to make a reliable diagnosis. You know how I trust this man, so even if it's totally crazy and stupid, it will at least ease my mind to have his opinion.
Meanwhile, physical therapy continues. There are numerous places on my body, both inside and outside that have scar tissue build-up that we're trying to break down. I was surprised to find out that I even have scar tissue running from my groin to my new girl from the drainage tubes I had to have after reconstruction. Obviously, my upcoming surgery will only create more scar tissue.
Breaking up scar tissue is painful. Now there's a surprise. Has anything in the past two years not been painful? Hell no. It's all relative, though, and it's far less painful than the needles-in-the-breast episode and the whole reconstruction (so far) ordeal.
I have exercises to do every night to get my lymphatic system up and running. Then I have to use a hand-held massager to work away at that scar tissue. That's in addition to the twice weekly manual manipulation with the physical therapist.
It feels like virtually every working moment is dedicated to some sort of body maintenance or bodily healing or trying to get my records sent here and there or trying to get an earlier appointment. I could go on and on.
But I won't. I spend so much time now in my weblogs cataloging the latest events that I never get around to how I'm feeling inside these days. I guess there's not much point in examining it. I'm emotionally ragged and exhausted. I'm so stressed out that I'm barely functional. Maybe tomorrow I can think about that a little more and feel it a little more.
Right now, I'm going home to eat something and work out to manage my stress level. Manage. There's a laugh. There's no managing to be done; I'm just trying to get through this. I don't think that counts as actually coming to terms with anything.
With any luck, I'll have enough time tomorrow in between resolving more medical issues to chronicle the latest emotional debacle.
posted by: gillymac (reply)
post date: 08.02.07 (2:41 pm)
Oh my poor darling. If I hadn't already booked to go to Europe I'd be using my vacation time to come and see you.(And force feed you irish stew)I hope that they are only being so proactive about this because of your past medical history and for no other more sinister reason. A or B? It may well be neither, precious friend.
My thoughts and prayers are with you. Charlie & Gypsy send furry cuddles of support too.
posted by: mimi (reply)
post date: 08.02.07 (3:40 pm)
This makes me so sad and worried...but like gilly said, perhaps it is your previous history initiating all this???? We can hope...April says "HOPE EVERY DAY"! xoxoxo
posted by: LadyG (reply)
post date: 08.02.07 (8:34 pm)
ggirl, I am just keeping you in my prayers, you have been through so much and I hate to think of you going through anymore, I hope that they are wrong about both of them. Stay strong, (((HUGS)))
posted by: ggirl (reply)
post date: 08.03.07 (8:30 am)
Reply to Gilly:
Wait a damn minute. You're going to Europe? I thought for sure you'd come visit me before you'd go traipsing off to Europe. Bad, bad Gilly!!
By the way, just in case you're in the neighborhood, I absolutely *love* Irish stew and used to make it myself back in the days when I cooked on a regular basis. So bring some with you, okay?
I'm a lot more fun than Europe, you know. You could even bring LO. ;-)
posted by: ggirl (reply)
post date: 08.03.07 (9:08 am)
Reply to: mimi
It's definitely *something* or there wouldn't have been any biopsy dignosis. I'm keeping a good thought that it's not going to be a big deal, though. Thank you for caring.
posted by: apyjo (reply)
post date: 08.04.07 (6:58 am)
ggirl, ...what are we gonna do with you ...you are turning into a wreck !
((Hugs
I hope it's easily taken care of my dear one.))
I have a few regular checkups and more allergy testing coming up this month .
Gotta take this thing in for a serious milage check up !
This whole corporeal thing is such a drag.
posted by: Tammy/Doe (reply)
post date: 08.06.07 (5:59 am)
I'm late responding but, you've been on my mind.
I'm not sure what to say other than, I'll continue to pray and hold good thoughts for you. I wish there was a more tangible way for me to show how much I care.
posted by: ggirl (reply)
post date: 08.06.07 (11:20 am)
Reply to: apyjo
More allergy tests? I hope this doesn't mean you'll have to cut even more stuff out of your diet. Just managing to find things you *can* eat has to be a job in itself. Take care, okay?
posted by: apyjo (reply)
post date: 08.07.07 (1:01 pm)
We didn't finish all the testing yet ( weeds, grasses, molds etc) .I should just save myself the needle pricks , pain and cost and just start taking antidote for everything they got !
posted by: kygcqcjlvd (reply)
post date: 08.23.07 (7:52 am)
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