little bit louder,
little bit worse...
excisional biopsy went well last week, got the results we expected, really... Classic Hodgkin's, specifically Nodular sclerosis classical Hodgkin's lymphoma, and my oncologist calls it 'non bulky' which as far as I can tell means 'not huge'
worse was the trip to the fertility specialist, he's a reproductive endocrinologist, and a good one apparently, I wish people would say "oh, he's a hack, you should go see someone else" but no, they just keep saying "oh... he's good"
sigh... at this moment, it looks like we have no options before treatment starts. He said we couldn't bank eggs, first they don't freeze eggs there yet, and second the cysts on my left ovary were freaking huge and we can't wait to take care of that first... so I don't know what's going to happen. He did take blood for tests and I got a call yesterday saying that it came back negative for ovarian cancer, which I wasn't really worried about since I'd seen the PET scan (god that was an experience, not because of the scan, or even the orange flavored barium... urgh... but because my right arm went numb and screaming in pain at the same time while I was all wrapped up in the CT and had to hold still for 35 minutes) and that my ovarian function was fine, so they work, but I can't use the eggs?
damnit... but maybe since they work fine now, they seemed to be afraid that they didnt' work, maybe that means a better chance that function will come back after treatment. I just don't know, he's supposed to call my oncologist and talk with her so maybe I'll find out something more soon.
I like my oncologist, she spent a lot of time talking to us the other day, and took time to explain everything and showed us the PET scans, which were actually pretty interesting. She seems very encouraging and positive about my prognosis, right now we are looking at 4-6 months of chemo alone, she doesn't want to use radiation unless we absolutely have to. I think I'm going to opt for the implanted port, I've come to dread the IV more than the procedures themselves, it's one more procedure but I think it would be worth the trade off.
Next week I have to go for a heart and lung test to make sure there's no problem before we start and give a baseline, and then I have to have a bone marrow biopsy, that's what I'm really not looking forward to... they keep saying it's not as bad as it sounds, but I'm not so sure. argh.
So, I'm getting ready to lose my hair on my poor lumpy head and starting to try and wrap my head and heart around the idea that I may never have my own baby... something I want so very badly...
one thing at a time... take it one thing at a time, now if it would only come one thing at a time :P
Friday, February 26, 2010
Tuesday, February 16, 2010
where to start? the beginning? nah...
well, it's been almost two weeks since I was told I have Cancer... yeah, CANCER... it's still sinking in. Hodgkin's lymphoma, specifically. Well, hopefully that's what it is, at least that's what I've been told and it's called "curable" instead of just "treatable" which is still a hell of a lot better than "incurable" or "terminal."
So... what now... I don't really know yet. I go in for the second biopsy tomorrow morning, it's going to be an excisional biopsy on the lymphnode on the left side of my neck, the same one they did the CT guided needle biopsy on week before last. I guess it's to type and stage... I guess, it's getting really hard for me to keep track lately.
The first weekend after the CT scan was THE WORST. It was awful, I went in for the scan of my neck because of the lump and the doctor reading the scans came out and said that she'd seen the lump and was concerned enough to want me to stay for a full body scan... they worked me in even though CT was booked full that day. They had me drink the radioactive apple juice... I think sitting in that cold hallway, alone, not having any idea how bad it was for them to want to do it right away, drinking that awful juice... that was the most alone and scared I can remember being in a long time. Then I got sick when they put in the IV for the iodine... so that took my mind off of it for a while :P Of course, by the time it was all done the doctor's office was closed and it was friday afternoon so I spent the entire weekend on the edge of complete panic and hysteria worrying about what they'd found... Robert summed it up saying that I had worked myself up to thinking that if you peeled off my skin that there would be nothing but cancer underneath... practically, it was terrible, I was so scared. We were moving into our first house that weekend so I had lots of company and plenty to keep me busy, but still my face kept leaking periodically...
When I heard that they had found another lump under my arm and something under my sternum (plus an ovarian cyst and uterine fibroids... when it rains it pours... bugger) I actually felt a lot better, that was something I could wrap my head around.
After we met with the Dr and he said it sure looked like lymphoma, but he said it was treatable and we needed to find out more so I got an appointment for the needle biopsy. Always ask questions kids... for some reason I forgot to ask what kind of biopsy it was going to be so I didn't know what to expect and that made me much more tense than the biopsy itself would have.
Wasn't bad, everyone was very nice. I discovered that I'm okay if they put the IV in while I'm laying down... much better. I got a little sad while all wrapped up like a burrito in the CT machine, the talking blur of the radiologist just outside the edge of my sight. I was thinking, "is this the new Normal? is this what our lives are going to be about now?" I guess in a way they are, but not all of it... we still have our new house to fill and decorate, we have our wedding to plan, we have our family to plan... tho that now waits for oncologists and fertility doctors... but life goes on, OUR lives go on...
I am very, very lucky, I have a tremendous family, both in my little immediate family and in Robert's huge and supportive family, and in my family of friends who always let me know I am loved and that we will never be alone in all this... It's not going to be fun, but it's going to be okay. I worry a lot more about Robby and my folks than I do about mysef... don't get me wrong, sometimes I'm still very scared. Right now I'm still scared that they'll come back after the biopsy tomorrow and tell me it's something much worse than Hodgkin's and they can't cure it... but I'm going to tell myself it's going to be okay... and learn to believe it.
So... what now... I don't really know yet. I go in for the second biopsy tomorrow morning, it's going to be an excisional biopsy on the lymphnode on the left side of my neck, the same one they did the CT guided needle biopsy on week before last. I guess it's to type and stage... I guess, it's getting really hard for me to keep track lately.
The first weekend after the CT scan was THE WORST. It was awful, I went in for the scan of my neck because of the lump and the doctor reading the scans came out and said that she'd seen the lump and was concerned enough to want me to stay for a full body scan... they worked me in even though CT was booked full that day. They had me drink the radioactive apple juice... I think sitting in that cold hallway, alone, not having any idea how bad it was for them to want to do it right away, drinking that awful juice... that was the most alone and scared I can remember being in a long time. Then I got sick when they put in the IV for the iodine... so that took my mind off of it for a while :P Of course, by the time it was all done the doctor's office was closed and it was friday afternoon so I spent the entire weekend on the edge of complete panic and hysteria worrying about what they'd found... Robert summed it up saying that I had worked myself up to thinking that if you peeled off my skin that there would be nothing but cancer underneath... practically, it was terrible, I was so scared. We were moving into our first house that weekend so I had lots of company and plenty to keep me busy, but still my face kept leaking periodically...
When I heard that they had found another lump under my arm and something under my sternum (plus an ovarian cyst and uterine fibroids... when it rains it pours... bugger) I actually felt a lot better, that was something I could wrap my head around.
After we met with the Dr and he said it sure looked like lymphoma, but he said it was treatable and we needed to find out more so I got an appointment for the needle biopsy. Always ask questions kids... for some reason I forgot to ask what kind of biopsy it was going to be so I didn't know what to expect and that made me much more tense than the biopsy itself would have.
Wasn't bad, everyone was very nice. I discovered that I'm okay if they put the IV in while I'm laying down... much better. I got a little sad while all wrapped up like a burrito in the CT machine, the talking blur of the radiologist just outside the edge of my sight. I was thinking, "is this the new Normal? is this what our lives are going to be about now?" I guess in a way they are, but not all of it... we still have our new house to fill and decorate, we have our wedding to plan, we have our family to plan... tho that now waits for oncologists and fertility doctors... but life goes on, OUR lives go on...
I am very, very lucky, I have a tremendous family, both in my little immediate family and in Robert's huge and supportive family, and in my family of friends who always let me know I am loved and that we will never be alone in all this... It's not going to be fun, but it's going to be okay. I worry a lot more about Robby and my folks than I do about mysef... don't get me wrong, sometimes I'm still very scared. Right now I'm still scared that they'll come back after the biopsy tomorrow and tell me it's something much worse than Hodgkin's and they can't cure it... but I'm going to tell myself it's going to be okay... and learn to believe it.
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