My CT scan has been rescheduled for 10:30 today. I've been fasting since 8pm yesterday. Needless to say, I am one cranky little kiddie.
Caroline sent me a care package yesterday. Thank you! I now have a good book to read and some fun mad libs to do. You can always count on Caroline for the good stuff. :) I've already tortured Chris with the stupid questions book. Good to have on hand.
I have a separate CT scan on Thursday for my head and neck. I wonder if this means that I'll have to drink more barium and have move iodine injected. It seems like a complete waste since I'll be drinking barium and having an iodine injection today. I also found out that I'll be having a scan of my pelvis. Guess how they get the iodine in there. Let's just say that the word enema was thrown around a few times. Can't wait. If they keep this up, I'll get a reputation. They just want to see how far the tumors have infiltrated my lower colon and in there's any bladder involvement. I'd rather think that there isn't, but that would be naive on my part.
So it's T-minus 15 minutes until the first barium shake arrives. I only have to drink down 3. Yummy, yummy. I chose apple this time. I can't quite remember how I felt about it last time. I'm hoping it was positive.
I'll write more when I know something else and I promise not to go into graphic detail about the introduction of iodine into the lower intestine.
Wednesday, October 24, 2007
Tuesday, October 23, 2007
Update
Happy birthday Paige and Bob!
We saw the doctor and he didn't have any news about the aspiration or biopsy. He did tell me that I'd be getting a CT on Wednesday and if all went well, I'd be discharged on Thursday. I asked him about the goober in my sinus cavity and he seemed to have forgotten it was there. He expanded the CT to include my head just to check in on things. A two for one as he called it.
The Rituxan is going down just fine. No fevers or chills. My IV pump keeps beeping like crazy because I'm on so many bags of medicine and they all finish at different times. Very annoying.
I finished coloring one picture and made an absolute mess of myself in the process. I loved every minute of it. Chris had me order a little something for lunch and I think it's a nap after that. The life of a prone patient tends to lean toward the tame side.
We saw the doctor and he didn't have any news about the aspiration or biopsy. He did tell me that I'd be getting a CT on Wednesday and if all went well, I'd be discharged on Thursday. I asked him about the goober in my sinus cavity and he seemed to have forgotten it was there. He expanded the CT to include my head just to check in on things. A two for one as he called it.
The Rituxan is going down just fine. No fevers or chills. My IV pump keeps beeping like crazy because I'm on so many bags of medicine and they all finish at different times. Very annoying.
I finished coloring one picture and made an absolute mess of myself in the process. I loved every minute of it. Chris had me order a little something for lunch and I think it's a nap after that. The life of a prone patient tends to lean toward the tame side.
Writing under the influence
Day +147
I'm currently tanked up to high heaven on pre-meds for Rituxan. Nurses hung a bag of benadryl about 10 minutes ago and I'm desperately fighting the urge to pass out. I get pre-meds because the doctors don't want my system to do anything cute while I'm getting infused. As you'll all recall, I got the chills and fever with my last dose. My nurse has reassured me repeatedly that I shouldn't have such a dramatic reaction the second time. Considering that I continue to be in the top percentile for strange cancer happenings, I'm not so sure.
My hair has begun to curl in the back leading to a myriad mullet jokes from my beloved husband. It's funny to think that I have pseudo-curly hair after a lifetime of straight as a pin, baby fine hair. It's still baby fine, but it screams business in the front and party in the back. All of my luxurious baby mink eyelashes have fallen out, leaving me with the same old sparse blinkers that I started adulthood with. Sigh. My eyebrows can still give Abe Vigoda (Fish from Barney Miller) a run for his money. I really need to do something about that.
We continue to be in the dark about my bone marrow aspiration and biopsy. Today is a clinic day for the transplant doctors, so I don't think that I'll see Dr. Anderlini until later this afternoon. My fingers are crossed that I don't have any marrow or CNA involvement with the PTLD. My life has refined down to a series of abbreviations and I'm not liking it.
My appetite continues to improve slowly. I now get hungry and can manage to eat a small meal without immediately revisiting it. I had stomach cramps for the better part of yesterday, but I think that has something to do with all of the drainage that I'm experiencing. Let's hope the necrotic mass in my sinus cavity is dissolving thanks to the Rituxan. I'll have a CT scan either Wednesday or Thursday. My night nurse seemed to think that it would be Wednesday, clearing me for discharge on Thursday. Just because things have been moving so slowly, I'm betting on Monday.
A nurse just hand delivered a care package stuffed with fun goodies. To the mystery person that sent it, thank you. You've made my week and I can't wait to start coloring! This means so very much to me and I can't thank you enough for bringing a little fun into this tiny beige cubicle.
On that note, I'm off to color and defend the chex mix from Chris. :)
I'm currently tanked up to high heaven on pre-meds for Rituxan. Nurses hung a bag of benadryl about 10 minutes ago and I'm desperately fighting the urge to pass out. I get pre-meds because the doctors don't want my system to do anything cute while I'm getting infused. As you'll all recall, I got the chills and fever with my last dose. My nurse has reassured me repeatedly that I shouldn't have such a dramatic reaction the second time. Considering that I continue to be in the top percentile for strange cancer happenings, I'm not so sure.
My hair has begun to curl in the back leading to a myriad mullet jokes from my beloved husband. It's funny to think that I have pseudo-curly hair after a lifetime of straight as a pin, baby fine hair. It's still baby fine, but it screams business in the front and party in the back. All of my luxurious baby mink eyelashes have fallen out, leaving me with the same old sparse blinkers that I started adulthood with. Sigh. My eyebrows can still give Abe Vigoda (Fish from Barney Miller) a run for his money. I really need to do something about that.
We continue to be in the dark about my bone marrow aspiration and biopsy. Today is a clinic day for the transplant doctors, so I don't think that I'll see Dr. Anderlini until later this afternoon. My fingers are crossed that I don't have any marrow or CNA involvement with the PTLD. My life has refined down to a series of abbreviations and I'm not liking it.
My appetite continues to improve slowly. I now get hungry and can manage to eat a small meal without immediately revisiting it. I had stomach cramps for the better part of yesterday, but I think that has something to do with all of the drainage that I'm experiencing. Let's hope the necrotic mass in my sinus cavity is dissolving thanks to the Rituxan. I'll have a CT scan either Wednesday or Thursday. My night nurse seemed to think that it would be Wednesday, clearing me for discharge on Thursday. Just because things have been moving so slowly, I'm betting on Monday.
A nurse just hand delivered a care package stuffed with fun goodies. To the mystery person that sent it, thank you. You've made my week and I can't wait to start coloring! This means so very much to me and I can't thank you enough for bringing a little fun into this tiny beige cubicle.
On that note, I'm off to color and defend the chex mix from Chris. :)
Sunday, October 21, 2007
D +145
Bummer...we made a really funny video post for today, just to let everyone know that we are very pretty positive and upbeat, but MDA's wifi network has uploads to youtube firewalled. I have tried for the last hour or two to send it through proxies, and even using my Treo as a cellular modem and no-dice. Take my word for it...it was funny and you would have laughed. So just go ahead and laugh, giggle or chuckle and then we can move on.
Done? OK then.
Seriously though as soon as I have a reliable Internet connection I'll post the video.
Here are Ann's labs for the day (plus some new values we might start including):
WBC 4.1 K/uL
RBC 2.84 M/uL
HGB 9.2 G/DL
PLT 343 K/uL
ANC 3.26 K/uL
LDH 579 IU/L
BUN 5 MG/DL
Overall things look good on the hematopoiesis front. Ann's WBCs have recovered from the little dip they had a couple of days ago. Her RBC numbers and HGB are starting to recover. Speculation on this is that the viral load in her blood may have been diminished by the Rituxan. I asked the attending doctor about this, but he just doesn't speculate on how treatment is going. Thats fine, but I feel like we go off on the wrong foot with him.
The last two numbers LDH and BUN have been of some concern to me over the last couple of days so I wanted to take a moment to talk about them. First Ann's BUN (Blood Urea Nitrogen) has been low since we came here to MDA. Most days it was 2 or 3 MG/DL, but today it has jumped up to 5 MG/DL. Since Ann wasn't eating due to cramps and diarrhea and BUN is a marker for malnutrition it makes sense that her levels would be low. Now that Ann has started to get her appetite back we are starting to see a gradual shift back towards normal. Which in this case is anything between 8 and 20 MG/DL.
Next LDH, which we've talked about before. It appears that her LDH levels have begun to fall. They started in the 400's and gradually began to rise after coming back to MDA. They spiked a bit after the 1st dose of Rituxan (600's). Now they appear to be falling back to the mid-high end of normal (313 - 618 IU/L). Because LDH is made when cells die off, the spike around the Rituxan infusion could mean that the PTLD is reactive to Rituxan.
We got a little news about Ann's last BMA from Friday. Her differential counts are back from pathology, but the attending doctor is hesitant to hand them to us until a full work up has been done. This is because he is worried that the PTLD could have gotten in Ann's new marrow. Not that it has, just that it could have. In the same was it is possible for you to get up and go into your kitchen and make yourself a ham sandwich, not that your going to or will. Anyway, the news he reluctantly parted with was that Ann has 1% blasts in her marrow. Which means that it looks like her baby stem cells are stable and doing their job. We will find out the final results from pathology Tuesday.
Ann's appetite continues to get better. She has gone from throwing up jello and soup for the 1st week we got here to eating almost an entire sandwich at a sitting. Her tummy still gets weird and I try to avoid eye contact or conversation while she's eating least I say something that sets it off. Right now I'm cautiously optimistic that the batter appetite and the apparently smaller node on her neck is a favorable sign.
Last but not least...
Ann and I have been through a lot in the past 10 months, but it's nothing compared to what others are going through. There is a little 9 year old boy in California named Dale Inouye who is suffering with ALL. He has been through chemo and relapsed. Then he underwent a transplant at UCLA using his brother's marrow, which allowed Dale several more months in remission from his disease. Unfortunately his family learned recently that Dale's leukemia has returned in a very aggressive way.
We really hope that Dale gets a chance to undergo another procedure that will bring about a durable remission for him and cure his leukemia. The big insitutions like M. D. Anderson are becoming much more aggressive in trying procedues like Double Cord Blood Transplants to treat relapsed resistant leukeima.
We were always struck by the commitment and love that Dale's parents and family showed for him and in reading the blog they kept for him. Ann and I would often draw strength from Dale's blog while we sat in the various waiting rooms of M. D. Anderson hoping we would get approval for her transplant. In those very dark and frightening times we were always encouraged to see the progress Dale was making on a daily basis. In addition we felt like we were allowed to share in the love and caring that his family has for him. I'm not sure we would have made it to where we are today if we didn't have Dale's story and pictures of his happy little face to brighten our lives.
Please visit their blog and let them know that other people are keeping them in their thoughts and wishing Dale well.
Bummer...we made a really funny video post for today, just to let everyone know that we are very pretty positive and upbeat, but MDA's wifi network has uploads to youtube firewalled. I have tried for the last hour or two to send it through proxies, and even using my Treo as a cellular modem and no-dice. Take my word for it...it was funny and you would have laughed. So just go ahead and laugh, giggle or chuckle and then we can move on.
Done? OK then.
Seriously though as soon as I have a reliable Internet connection I'll post the video.
Here are Ann's labs for the day (plus some new values we might start including):
WBC 4.1 K/uL
RBC 2.84 M/uL
HGB 9.2 G/DL
PLT 343 K/uL
ANC 3.26 K/uL
LDH 579 IU/L
BUN 5 MG/DL
Overall things look good on the hematopoiesis front. Ann's WBCs have recovered from the little dip they had a couple of days ago. Her RBC numbers and HGB are starting to recover. Speculation on this is that the viral load in her blood may have been diminished by the Rituxan. I asked the attending doctor about this, but he just doesn't speculate on how treatment is going. Thats fine, but I feel like we go off on the wrong foot with him.
The last two numbers LDH and BUN have been of some concern to me over the last couple of days so I wanted to take a moment to talk about them. First Ann's BUN (Blood Urea Nitrogen) has been low since we came here to MDA. Most days it was 2 or 3 MG/DL, but today it has jumped up to 5 MG/DL. Since Ann wasn't eating due to cramps and diarrhea and BUN is a marker for malnutrition it makes sense that her levels would be low. Now that Ann has started to get her appetite back we are starting to see a gradual shift back towards normal. Which in this case is anything between 8 and 20 MG/DL.
Next LDH, which we've talked about before. It appears that her LDH levels have begun to fall. They started in the 400's and gradually began to rise after coming back to MDA. They spiked a bit after the 1st dose of Rituxan (600's). Now they appear to be falling back to the mid-high end of normal (313 - 618 IU/L). Because LDH is made when cells die off, the spike around the Rituxan infusion could mean that the PTLD is reactive to Rituxan.
We got a little news about Ann's last BMA from Friday. Her differential counts are back from pathology, but the attending doctor is hesitant to hand them to us until a full work up has been done. This is because he is worried that the PTLD could have gotten in Ann's new marrow. Not that it has, just that it could have. In the same was it is possible for you to get up and go into your kitchen and make yourself a ham sandwich, not that your going to or will. Anyway, the news he reluctantly parted with was that Ann has 1% blasts in her marrow. Which means that it looks like her baby stem cells are stable and doing their job. We will find out the final results from pathology Tuesday.
Ann's appetite continues to get better. She has gone from throwing up jello and soup for the 1st week we got here to eating almost an entire sandwich at a sitting. Her tummy still gets weird and I try to avoid eye contact or conversation while she's eating least I say something that sets it off. Right now I'm cautiously optimistic that the batter appetite and the apparently smaller node on her neck is a favorable sign.
Last but not least...
Ann and I have been through a lot in the past 10 months, but it's nothing compared to what others are going through. There is a little 9 year old boy in California named Dale Inouye who is suffering with ALL. He has been through chemo and relapsed. Then he underwent a transplant at UCLA using his brother's marrow, which allowed Dale several more months in remission from his disease. Unfortunately his family learned recently that Dale's leukemia has returned in a very aggressive way.
We really hope that Dale gets a chance to undergo another procedure that will bring about a durable remission for him and cure his leukemia. The big insitutions like M. D. Anderson are becoming much more aggressive in trying procedues like Double Cord Blood Transplants to treat relapsed resistant leukeima.
We were always struck by the commitment and love that Dale's parents and family showed for him and in reading the blog they kept for him. Ann and I would often draw strength from Dale's blog while we sat in the various waiting rooms of M. D. Anderson hoping we would get approval for her transplant. In those very dark and frightening times we were always encouraged to see the progress Dale was making on a daily basis. In addition we felt like we were allowed to share in the love and caring that his family has for him. I'm not sure we would have made it to where we are today if we didn't have Dale's story and pictures of his happy little face to brighten our lives.
Please visit their blog and let them know that other people are keeping them in their thoughts and wishing Dale well.
Friday, October 19, 2007
Day +142
The puce/beige walls of my hospital room are beginning to feel homey in a strange sort of way. I'm hoping that I'm not becoming institutionalized.
I had my bone marrow biopsy bright and early this morning. This means that I didn't have the nasal "tumor" biopsy, which is fine by me. When I started thinking about the logistics of going in to get a nice big chunk, I started worrying about what angle the doctors would have to go in at. Also, there was a resident that was just way too eager about getting in there. I don't mind being a learning experience, I just don't want some freak getting too excited with a scalpel that close to my brain.
Two very small ladies performed the BMA and if you've read past blog entries on the procedure, you know that it makes it just a little more painful. They had to go in four times to get a bone sample because she couldn't get a hold of the sliver that she'd singled out. Not fun and my bum hurts. They say the best remedy for the pain is walking and I've already walked a mile and I can assure you that there's been no change.
The attending physicians have been by to examine me and the primary transplant doctor seemed pleased. When he palpated the tumor in my neck he exclaimed, "Interesting." I had to ask for clarification, since you never know which way they might be going. He said it was good because it was harder to feel the lump. I'll take all of the good news that I can get. I'm tentatively scheduled for another dose of Rituxan on Monday or Tuesday and then I'm off for another CT scan. I should probably start thinking about the flavor of barium drink I want now. Citrus is pretty unpalatable and apple tastes strange. This leaves me with berry and bananna. I think they also offer chocolate, but if memory serves me correctly, it tastes like exlax.
I managed not to vomit yesterday, only to ruin my image today by vomitting after a hearty breakfast of vanilla boost plus. My poor nurse has definitely been put through her paces with me. Chris is as worried as ever. He was hopeful that my GI tract was rebounding after my first treatment. The nurse reassurred him that it never stopped working. It's only been challenged by all the little knoblets taking up residence.
On a bright note, I finally convinced Chris to get me gum. I haven't chewed a piece in over 10 months and having it again has been heaven. It's been so long, I have to make a point of not chewing with my mouth open and smacking like a child. I can't report on anything else, as it's been a rather slow day. That's the way we like them.
Susan, I wanted to email you, but there's something weird going on with the servers here. I really appreciate the offer of the sleeve for my PICC line. I also make a mess of covering it up for showers. Unfortunately, I don't think my line will be in long enough for me to make a go of it and I'd hate for you to have to go to the trouble of mailing it. I sincerely appreciate you thinking of me. :) I know you'll find someone close to home who can really put it to good use.
To all of the friends who have emailed and not received replies, it's not because I'm not trying. We're experiencing technical difficulties. Poor Chris has been trying to send out his resume for days to no avail. Caroline, he's trying to send one to you--also, loved the net note. It made my day.
I'll post later if we hear anything else. My regular doctor usually makes an appearance late in the day with updates and my preliminary bone marrow aspiration results should be in this afternoon. Sorry for any typos--spell check isn't working.
The puce/beige walls of my hospital room are beginning to feel homey in a strange sort of way. I'm hoping that I'm not becoming institutionalized.
I had my bone marrow biopsy bright and early this morning. This means that I didn't have the nasal "tumor" biopsy, which is fine by me. When I started thinking about the logistics of going in to get a nice big chunk, I started worrying about what angle the doctors would have to go in at. Also, there was a resident that was just way too eager about getting in there. I don't mind being a learning experience, I just don't want some freak getting too excited with a scalpel that close to my brain.
Two very small ladies performed the BMA and if you've read past blog entries on the procedure, you know that it makes it just a little more painful. They had to go in four times to get a bone sample because she couldn't get a hold of the sliver that she'd singled out. Not fun and my bum hurts. They say the best remedy for the pain is walking and I've already walked a mile and I can assure you that there's been no change.
The attending physicians have been by to examine me and the primary transplant doctor seemed pleased. When he palpated the tumor in my neck he exclaimed, "Interesting." I had to ask for clarification, since you never know which way they might be going. He said it was good because it was harder to feel the lump. I'll take all of the good news that I can get. I'm tentatively scheduled for another dose of Rituxan on Monday or Tuesday and then I'm off for another CT scan. I should probably start thinking about the flavor of barium drink I want now. Citrus is pretty unpalatable and apple tastes strange. This leaves me with berry and bananna. I think they also offer chocolate, but if memory serves me correctly, it tastes like exlax.
I managed not to vomit yesterday, only to ruin my image today by vomitting after a hearty breakfast of vanilla boost plus. My poor nurse has definitely been put through her paces with me. Chris is as worried as ever. He was hopeful that my GI tract was rebounding after my first treatment. The nurse reassurred him that it never stopped working. It's only been challenged by all the little knoblets taking up residence.
On a bright note, I finally convinced Chris to get me gum. I haven't chewed a piece in over 10 months and having it again has been heaven. It's been so long, I have to make a point of not chewing with my mouth open and smacking like a child. I can't report on anything else, as it's been a rather slow day. That's the way we like them.
Susan, I wanted to email you, but there's something weird going on with the servers here. I really appreciate the offer of the sleeve for my PICC line. I also make a mess of covering it up for showers. Unfortunately, I don't think my line will be in long enough for me to make a go of it and I'd hate for you to have to go to the trouble of mailing it. I sincerely appreciate you thinking of me. :) I know you'll find someone close to home who can really put it to good use.
To all of the friends who have emailed and not received replies, it's not because I'm not trying. We're experiencing technical difficulties. Poor Chris has been trying to send out his resume for days to no avail. Caroline, he's trying to send one to you--also, loved the net note. It made my day.
I'll post later if we hear anything else. My regular doctor usually makes an appearance late in the day with updates and my preliminary bone marrow aspiration results should be in this afternoon. Sorry for any typos--spell check isn't working.
Thursday, October 18, 2007
Day +141
We got the official word on what's going on a few minutes ago. I have PTLD, which is a pre-cursor of lymphoma. The doctors keep emphasizing that this is not cancer and is only a complication. My leukemia has not reactivated, but I will be getting a bone marrow biopsy tomorrow to see what's going on with my graft. They just want to be sure that the PTLD hasn't infiltrated my graft.
The results from my CT scan showed that my abdomen is littered with lymphnodes growing tumors. This is par for the course with PTLD. This is also the reason that I've had extreme nausea and diarrhea. I'm not absorbing nutrients like I should. My attending physician has decided to cancel the surgery scheduled for me for tomorrow. The head and neck guys were going to go in and get a big chunk of the tumor growing in my sinus cavity. Here I thought it was just a giant plug of snot. Silly me.
I received my first dose of Rituxan yesterday. It's side effects are similar to that of rabbit ATG. I got severe chills and they had to put something in my mouth so I wouldn't bite my tongue off. It was pretty bad. I had a fever all night in addition to the chills. The nurses have reassured me that the next dose will be easier to tolerate. I'll get one dose a week for a total of four weeks. This is preliminary based on how well the tumors react to the drug.
The test for EBV came back positive, which is how all of this started. The Epstein Barr virus infiltrated my defenses and just started wrecking the place. This is the same virus that can be responsible for mono in healthy people. I don't know where I picked it up from, but I do know that the cat's are off the hook. My doctor ran a test for cat scratch fever. I know she had to, but I still would have felt horrible if one of the kids gave this to me. The test for that came back negative.
The attending physician did remark that the node on the side of my neck and jaw seemed to have shrunk and I can confirm this. I'm experience significant sinus drainage and the speculation is that the tumor in my sinus cavity is starting to shrink and that's what's draining. It's so yummy to be me.
I will admit to being a little irritated at having "beaten" one cancer only to fall face first into the world's biggest pile of dog pooh. Don't get me wrong, I'm not having a pity party, or a "why me?" moment. I was just hoping for a little bit of a break and a chance to get my life back on track. It looks like I'll be in the hospital for a total of five weeks this time around. Feel free to email and post lots of comments. I only packed one book and it is horrible. I seriously thought that I would be getting out of here within a week. Silly me.
On the knitting front, things couldn't be worse. You really shouldn't knit something intricate when you know that you'll have interruptions every few minutes. The lace stole I'm knitting looks more like those sad little pot holders we all made during arts and crafts for mother's day. I'm still following through with it and by gosh, I'm going to wear it. Probably inside, with the curtains drawn and the lights turned down really low. But I'll still wear it. I've decided that when I get out, I'm finally going to try to knit a sweater. God help me. I'll have to seriously concentrate on that one. Knowing me, I'll choose the most intricate design that I can find, cavalierly ignoring the "expert" rating on the pattern in favor of my high intellect and over abundance of confidence. How do people put up with me?
It's almost noon and I'm still in my jammies. I'm waiting for a nurse to come in and wrap my arm up so I can take a shower. No telling when this will happen. The poor nurses are so over worked, I hate to bother them for something so trivial. I did get the PICC line in my arm and it did suck. The bright side is that they can get blood draws from it, so no more needle sticks. Or, rather, I should say fewer needle sticks.
Chris is being amazing throughout all of this. I know he's scared spitless and I wish that I could make things better. He's busy putting together things to keep me entertained and out of trouble. That's all I have for now. If I hear of anything else, I'll pass it along.
We got the official word on what's going on a few minutes ago. I have PTLD, which is a pre-cursor of lymphoma. The doctors keep emphasizing that this is not cancer and is only a complication. My leukemia has not reactivated, but I will be getting a bone marrow biopsy tomorrow to see what's going on with my graft. They just want to be sure that the PTLD hasn't infiltrated my graft.
The results from my CT scan showed that my abdomen is littered with lymphnodes growing tumors. This is par for the course with PTLD. This is also the reason that I've had extreme nausea and diarrhea. I'm not absorbing nutrients like I should. My attending physician has decided to cancel the surgery scheduled for me for tomorrow. The head and neck guys were going to go in and get a big chunk of the tumor growing in my sinus cavity. Here I thought it was just a giant plug of snot. Silly me.
I received my first dose of Rituxan yesterday. It's side effects are similar to that of rabbit ATG. I got severe chills and they had to put something in my mouth so I wouldn't bite my tongue off. It was pretty bad. I had a fever all night in addition to the chills. The nurses have reassured me that the next dose will be easier to tolerate. I'll get one dose a week for a total of four weeks. This is preliminary based on how well the tumors react to the drug.
The test for EBV came back positive, which is how all of this started. The Epstein Barr virus infiltrated my defenses and just started wrecking the place. This is the same virus that can be responsible for mono in healthy people. I don't know where I picked it up from, but I do know that the cat's are off the hook. My doctor ran a test for cat scratch fever. I know she had to, but I still would have felt horrible if one of the kids gave this to me. The test for that came back negative.
The attending physician did remark that the node on the side of my neck and jaw seemed to have shrunk and I can confirm this. I'm experience significant sinus drainage and the speculation is that the tumor in my sinus cavity is starting to shrink and that's what's draining. It's so yummy to be me.
I will admit to being a little irritated at having "beaten" one cancer only to fall face first into the world's biggest pile of dog pooh. Don't get me wrong, I'm not having a pity party, or a "why me?" moment. I was just hoping for a little bit of a break and a chance to get my life back on track. It looks like I'll be in the hospital for a total of five weeks this time around. Feel free to email and post lots of comments. I only packed one book and it is horrible. I seriously thought that I would be getting out of here within a week. Silly me.
On the knitting front, things couldn't be worse. You really shouldn't knit something intricate when you know that you'll have interruptions every few minutes. The lace stole I'm knitting looks more like those sad little pot holders we all made during arts and crafts for mother's day. I'm still following through with it and by gosh, I'm going to wear it. Probably inside, with the curtains drawn and the lights turned down really low. But I'll still wear it. I've decided that when I get out, I'm finally going to try to knit a sweater. God help me. I'll have to seriously concentrate on that one. Knowing me, I'll choose the most intricate design that I can find, cavalierly ignoring the "expert" rating on the pattern in favor of my high intellect and over abundance of confidence. How do people put up with me?
It's almost noon and I'm still in my jammies. I'm waiting for a nurse to come in and wrap my arm up so I can take a shower. No telling when this will happen. The poor nurses are so over worked, I hate to bother them for something so trivial. I did get the PICC line in my arm and it did suck. The bright side is that they can get blood draws from it, so no more needle sticks. Or, rather, I should say fewer needle sticks.
Chris is being amazing throughout all of this. I know he's scared spitless and I wish that I could make things better. He's busy putting together things to keep me entertained and out of trouble. That's all I have for now. If I hear of anything else, I'll pass it along.
Wednesday, October 17, 2007
Day +140
Chris has insisted that it is my turn to blog today. I'm not exactly in the best mood, so please forgive me a head of time. My transplant doctor stopped in while I was out having a CT scan, so she got a lot of one on one time with Chris. It would seem that the protein levels in my blood have dropped which means that my body is going to start cannibalizing my muscles for protein soon. She suggested that he get me to drink a boost. I will drink the boost. When I am ready. Getting the little can pushed under my nose every few hours is making me dig my heels in and resist like a 4 year old. I have been complaining about possible being malnourished for a month and I'm just now getting lambasted. Please give me a break.
I had several large helpings of citrus flavored barium before the CT scan which has caused multiple tummy problems. My nurse gave me some Ativan before hand so I wouldn't throw up. Throwing up wasn't the problem. It was the other end. Go barium.
I'm getting a new line inserted to receive IV medicines. The stick line that I currently have isn't cutting it. The option of another CVC was presented, but discarded in favor of a PIC line. It's a line that runs up my arm. I hope it doesn't get in the way of the knitting, because I don't really have anything to do up here.
Poor Chris is getting manic with the not knowing. None of the test results are in and he lives for the numbers. I have a small surgery scheduled for Friday. The head and neck guys are going to be going in and taking out a larger piece of the necrotic "tumor", for testing. Can't wait. Maybe I'll get ice cream and pudding for most of my meals.
I don't have anything more to add. Chris may blog later if he learns anything else. He's been quite a trooper throughout this entire ordeal and I'm hoping it's all over before too long.
Chris has insisted that it is my turn to blog today. I'm not exactly in the best mood, so please forgive me a head of time. My transplant doctor stopped in while I was out having a CT scan, so she got a lot of one on one time with Chris. It would seem that the protein levels in my blood have dropped which means that my body is going to start cannibalizing my muscles for protein soon. She suggested that he get me to drink a boost. I will drink the boost. When I am ready. Getting the little can pushed under my nose every few hours is making me dig my heels in and resist like a 4 year old. I have been complaining about possible being malnourished for a month and I'm just now getting lambasted. Please give me a break.
I had several large helpings of citrus flavored barium before the CT scan which has caused multiple tummy problems. My nurse gave me some Ativan before hand so I wouldn't throw up. Throwing up wasn't the problem. It was the other end. Go barium.
I'm getting a new line inserted to receive IV medicines. The stick line that I currently have isn't cutting it. The option of another CVC was presented, but discarded in favor of a PIC line. It's a line that runs up my arm. I hope it doesn't get in the way of the knitting, because I don't really have anything to do up here.
Poor Chris is getting manic with the not knowing. None of the test results are in and he lives for the numbers. I have a small surgery scheduled for Friday. The head and neck guys are going to be going in and taking out a larger piece of the necrotic "tumor", for testing. Can't wait. Maybe I'll get ice cream and pudding for most of my meals.
I don't have anything more to add. Chris may blog later if he learns anything else. He's been quite a trooper throughout this entire ordeal and I'm hoping it's all over before too long.
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