so it's been way too long... I guess there were a lot of days that I just didn't feel up to posting and many days when I had too much to say and didn't know how to start.
I'm a couple of months out from chemo now...
My last two PET/CT scans have been completely clear of activity... thank... well, just thanks to everything
I have to keep getting scans every six months for the next two years and I'm keeping my port in so I have to go get that flushed every so often.
It's so strange, it feels like it all happened to someone else, I have trouble believing that I went through all that. I'm glad I kept my photos of the experience on my facebook and I really should go back and gather up the status updates. I should think more about writing it all down... could I write a book? I really don't know.
It's a brand new year and I hope to goodness that it's going to be a better one... I'm on my way to being well and the marina is FINALLY on the way to being rebuilt.
I don't really have a resolution for the new year but I've decided that my main focus should be on getting healthy, including losing weight and getting stronger.
I don't ever want to play this cancer game again, and I want to be able to have a baby... right now my biggest problem is that the ovarian cyst that was 2ish inches before treatment is apparently the size of a freaking grapefruit now... sigh, it's always something. My joints and such, especially my hips are hurting again now that I'm not getting all those steroids in treatment.
I know that so much of this could be helped by taking better care of myself.
My questions this year should always be "is this the healthy thing for me? What can I do to make myself stronger and better?"
I had a sonic burger, tater tots and a cherry coke for dinner... which certainly does not fit with my healthy goal... and the tater tots were not good. bleah. So this needs to mark the last time I indulge in that meal, and it's good to remember that it wasn't much of an indulgence as it wasn't yummy enough to justify its unhealthiness.
So... onward into the breach... or something like that. Good luck folks, hopefully we won't need as much this year.
Sunday, January 2, 2011
Wednesday, June 2, 2010
whew... long time no see, or write or whatever... it's been a doozy :P
I meant to keep up with this better... it sure has been an experience. I've just started my third cycle... I think, i'm not too sure these days.
Chemo is no fun, I won't lie, but we do what we have to, and while the side effects are a bitch mine haven't been as bad as some I've heard about. Of course I just wince when I hear about people working all the way through treatment, I sleep so much I can hardly keep up with feeding myself some days, which is why I am so incredibly lucky to have such wonderful friends... they have just gone above and beyond for us, wonderful home cooked meals delivered, which is a life saver because some days I know full well that I wouldn't eat if there wasn't already something waiting for me in the kitchen (and I can't really be trusted with the stove most days) a couple of the girls came over to clean one day because they "don't clean and we wanted to help!" they're so cute.
Everything else has not been good at all, this is the year of the total disaster. For 20 years my family has owned and operated a marina on the lake east of our hometown here in central Oklahoma... well, a few weeks ago it was hit dead center by an F4 tornado, total distruction, as we've started to say (especially when trying to explain why we don't need business phone service for a while) "WHOOSH GONE!" which is really the best description... it'll all be okay eventually, but the stress is just about to knock my parent's completely out. Amazingly enough our insurance company has been the best thing in this mess, the 'people' from The State have been horrible and I hope they all contract something embarrassing, expensive to cure, and uncomfortable :P
Then on Sunday of this past memorial weekend my dear old dog Dexter had a heart attack and died, he'd been living with mom and dad since my other dog Milli had passed away in her sleep (probably her heart too, years ago they had contracted and been treated for heartworms, terrible things) so he lived a very good life these last two years. Just days before we had found out that he had a "mass" in his abdomen and they removed it and his spleen... but he was doing much better and came home and was happy and noticably more active. I don't think the heart attack really had to do with his surgery, he was getting to be an old dog now, 12 or 13 and he had been older than Milli and outlived her another two years already. I was heartbroken but really the worst part was my parents were just inconsolable when I got them on the phone, they had done everything they could, they had noticed him acting strange and called the emergency vet, but he died right there with them, they took him to the vet ER where they tried to resucitate him but it was just too late. We buried him here at the new house... I was not being reasonable when I was still the only one here and tried to go dig a grave for a big dog all by myself, then Robby got home and stopped me, but I went back out while he changed and tried to dig more... then I fell over... yeah, I should know better even when I'm all upset, but these things happen.
The best thing lately is I have discovered my own little therapy for chemotherapy, I've been going out for the last couple of hours before dark (when i'm able of course) and doing a little gardening. We have wonderful dirt here in the new yard, and even tho the house had been empty for at least two years before we moved in January, the previous owner had been a gardener. I call it our Year of the Mystery Garden, because we never know what's going to pop up, he left us some wonderful plants to build gardens around. I have found that this little bit of activity really helps me feel better, and a lot less crazy. Sometimes it's the only real time I spend out of bed during the day. I can't be out in the sun at all, these chemicals make me super sun sensitive even with sunscreen, and I get hot and overheated in no time at all so I can't be out during the majority of the day. But if I stick to those last few hours when the UV index is 2 to 0, and I sit, I find I can weed and plant things, do a little walking and stooping to water, and I painted our mailbox post bright purple while Robert was gone over a weekend for the Royal Daughter's highschool graduation in Colorado Springs :) <3 I'm still dissappointed that I couldn't go but it was just too far and I was too weak, I think it made the trip easier for everyone else too, not having to worry about me and my needing to rest and such... somethings you just can't control.
boy that's something that's gotten to me lately. I'm not used to this loss of independence that has occurred. When I first started treatment my friend kept insisting that I couldn't drive while taking chemo, I told her she was nuts, but she was convinced that I'd kill myself (her own mom who passed away from cancer had had a car accident while on chemo and didn't even know what happend) Turned out that for me she was right, just because I get so weak and worn out so fast and lightheadedness is a real problem, passing out is not unlikely... and then the poor Neon decided to hemmorage and spew all of it's internal fluids onto the driveway... sooo, that pretty much took care of my driving anyway. Now I have to find someone to take me when I want to go anywhere, so they have to have time and some inclination to play taxi driver that particular day. I am so not used to not being able to go to the store when I want, I still don't have any almond milk for my danged cereal and it's been days :P
but This Too Shall Pass, and I'll get better, and I owe it to all the people who have been going out of their way to help us to do the very best I can and take the best care of myself possible, including remembering to take those iron supplements with the icky vitamin C drink
good luck out there and remember you are not alone, I've been amazed at the responses from people who have either dealt with cancer themselves or a loved one's battle... it's scary but there's always hope, my step-daughter to be (17 day to the wedding eep, I am the least prepared bride ever, but this is going to be fun and simple, and in medieval garb of course, the traditional one will be much more stressful and after treatment is DONE) sent me one of those rubber bracelets, purple with HOPE on it... it helps me remember that we always need hope and can find it somewhere out there or in ourselves.
So find your hope, in a tiny seedling, the hug of a friend or a purple rubber bracelet ;) and hang onto it.
Chemo is no fun, I won't lie, but we do what we have to, and while the side effects are a bitch mine haven't been as bad as some I've heard about. Of course I just wince when I hear about people working all the way through treatment, I sleep so much I can hardly keep up with feeding myself some days, which is why I am so incredibly lucky to have such wonderful friends... they have just gone above and beyond for us, wonderful home cooked meals delivered, which is a life saver because some days I know full well that I wouldn't eat if there wasn't already something waiting for me in the kitchen (and I can't really be trusted with the stove most days) a couple of the girls came over to clean one day because they "don't clean and we wanted to help!" they're so cute.
Everything else has not been good at all, this is the year of the total disaster. For 20 years my family has owned and operated a marina on the lake east of our hometown here in central Oklahoma... well, a few weeks ago it was hit dead center by an F4 tornado, total distruction, as we've started to say (especially when trying to explain why we don't need business phone service for a while) "WHOOSH GONE!" which is really the best description... it'll all be okay eventually, but the stress is just about to knock my parent's completely out. Amazingly enough our insurance company has been the best thing in this mess, the 'people' from The State have been horrible and I hope they all contract something embarrassing, expensive to cure, and uncomfortable :P
Then on Sunday of this past memorial weekend my dear old dog Dexter had a heart attack and died, he'd been living with mom and dad since my other dog Milli had passed away in her sleep (probably her heart too, years ago they had contracted and been treated for heartworms, terrible things) so he lived a very good life these last two years. Just days before we had found out that he had a "mass" in his abdomen and they removed it and his spleen... but he was doing much better and came home and was happy and noticably more active. I don't think the heart attack really had to do with his surgery, he was getting to be an old dog now, 12 or 13 and he had been older than Milli and outlived her another two years already. I was heartbroken but really the worst part was my parents were just inconsolable when I got them on the phone, they had done everything they could, they had noticed him acting strange and called the emergency vet, but he died right there with them, they took him to the vet ER where they tried to resucitate him but it was just too late. We buried him here at the new house... I was not being reasonable when I was still the only one here and tried to go dig a grave for a big dog all by myself, then Robby got home and stopped me, but I went back out while he changed and tried to dig more... then I fell over... yeah, I should know better even when I'm all upset, but these things happen.
The best thing lately is I have discovered my own little therapy for chemotherapy, I've been going out for the last couple of hours before dark (when i'm able of course) and doing a little gardening. We have wonderful dirt here in the new yard, and even tho the house had been empty for at least two years before we moved in January, the previous owner had been a gardener. I call it our Year of the Mystery Garden, because we never know what's going to pop up, he left us some wonderful plants to build gardens around. I have found that this little bit of activity really helps me feel better, and a lot less crazy. Sometimes it's the only real time I spend out of bed during the day. I can't be out in the sun at all, these chemicals make me super sun sensitive even with sunscreen, and I get hot and overheated in no time at all so I can't be out during the majority of the day. But if I stick to those last few hours when the UV index is 2 to 0, and I sit, I find I can weed and plant things, do a little walking and stooping to water, and I painted our mailbox post bright purple while Robert was gone over a weekend for the Royal Daughter's highschool graduation in Colorado Springs :) <3 I'm still dissappointed that I couldn't go but it was just too far and I was too weak, I think it made the trip easier for everyone else too, not having to worry about me and my needing to rest and such... somethings you just can't control.
boy that's something that's gotten to me lately. I'm not used to this loss of independence that has occurred. When I first started treatment my friend kept insisting that I couldn't drive while taking chemo, I told her she was nuts, but she was convinced that I'd kill myself (her own mom who passed away from cancer had had a car accident while on chemo and didn't even know what happend) Turned out that for me she was right, just because I get so weak and worn out so fast and lightheadedness is a real problem, passing out is not unlikely... and then the poor Neon decided to hemmorage and spew all of it's internal fluids onto the driveway... sooo, that pretty much took care of my driving anyway. Now I have to find someone to take me when I want to go anywhere, so they have to have time and some inclination to play taxi driver that particular day. I am so not used to not being able to go to the store when I want, I still don't have any almond milk for my danged cereal and it's been days :P
but This Too Shall Pass, and I'll get better, and I owe it to all the people who have been going out of their way to help us to do the very best I can and take the best care of myself possible, including remembering to take those iron supplements with the icky vitamin C drink
good luck out there and remember you are not alone, I've been amazed at the responses from people who have either dealt with cancer themselves or a loved one's battle... it's scary but there's always hope, my step-daughter to be (17 day to the wedding eep, I am the least prepared bride ever, but this is going to be fun and simple, and in medieval garb of course, the traditional one will be much more stressful and after treatment is DONE) sent me one of those rubber bracelets, purple with HOPE on it... it helps me remember that we always need hope and can find it somewhere out there or in ourselves.
So find your hope, in a tiny seedling, the hug of a friend or a purple rubber bracelet ;) and hang onto it.
Wednesday, March 17, 2010
full speed ahead... sorta...
I had my bone marrow biopsy a week ago Monday... and I was nervous, really nervous by the time it came around. However, now I can tell anyone who faces the procedure in the future, it's just not that bad... it's not exactly fun, but it isn't anywhere as bad as your imagination makes it.
Got the results this Monday evening, they were clean... thank goodness. If it had been positive it would have made my Hodgkin's stage 4 rather than the stage 2A it is. Now we can stick to the plan my oncologist had mapped out for 4-6 months of chemotherapy with (hopefully) no radiation, she believes that combining the chemo and radiation carries a possibility for long-term complications that we don't need to risk at the moment. Works for me.
So now I wait again, for my oncologist's nurse, Laura, to call with the schedule after the doctor writes out the orders for my chemo. I've also decided to opt to have the port implanted to use for my chemo and hopefully any other tests and those blood draws I seem to constantly require. I've come to dread the IV more than the procedures so I think the port is the option for me, they tell me it's a simple procedure, easier than my surgical biopsy, so I'm going to go for it. As soon as they call I'll see about scheduling with the surgeon.
So it looks like we'll be getting started soon... suddenly it's more real than it has been so far. Until now in spite of all the tests and talk it's been sort of abstract and now it's turning concrete right before my eyes... I feel a little scared, but I know we're doing what we need to do to get past this and back to real life. Whatever our New Normal Life will be...
We (myself, robert and my brother) are going to get our portrait taken on Friday morning, my mom has been asking my brother and I to get our pictures taken for ages, and I'd like some pictures with my fiance too, before my hair falls out... I still wonder some days what it will come back like, superficial perhaps but I have gotten to a place in my life where I like my hair and now it's going to fall out, well break off the doctor says. Ah well.
Got the results this Monday evening, they were clean... thank goodness. If it had been positive it would have made my Hodgkin's stage 4 rather than the stage 2A it is. Now we can stick to the plan my oncologist had mapped out for 4-6 months of chemotherapy with (hopefully) no radiation, she believes that combining the chemo and radiation carries a possibility for long-term complications that we don't need to risk at the moment. Works for me.
So now I wait again, for my oncologist's nurse, Laura, to call with the schedule after the doctor writes out the orders for my chemo. I've also decided to opt to have the port implanted to use for my chemo and hopefully any other tests and those blood draws I seem to constantly require. I've come to dread the IV more than the procedures so I think the port is the option for me, they tell me it's a simple procedure, easier than my surgical biopsy, so I'm going to go for it. As soon as they call I'll see about scheduling with the surgeon.
So it looks like we'll be getting started soon... suddenly it's more real than it has been so far. Until now in spite of all the tests and talk it's been sort of abstract and now it's turning concrete right before my eyes... I feel a little scared, but I know we're doing what we need to do to get past this and back to real life. Whatever our New Normal Life will be...
We (myself, robert and my brother) are going to get our portrait taken on Friday morning, my mom has been asking my brother and I to get our pictures taken for ages, and I'd like some pictures with my fiance too, before my hair falls out... I still wonder some days what it will come back like, superficial perhaps but I have gotten to a place in my life where I like my hair and now it's going to fall out, well break off the doctor says. Ah well.
Friday, February 26, 2010
same song second verse
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
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
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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