WBC - 3.7 (up 500 from previous day)
Platelets - 208 (up 66 from previous day)
ANC - waiting on segs/bands to calculate, but they'll be considerably higher than yesterday's high of 163,200 (will update here when known)
Hemoglobin - 10.9 (down 200 from previous day)
Hematocrit - 31.1 (down 700 from previous day)
Well, I made it through the night without a fever, I am indescribably happy to report. I should be able to get out of here TODAY!!! Lorraine's already left for work, and in the back of the car she'll have a jacket for me and suitcases into which we'll pack up my stuff! No matter how much you go in with, you always leave with more. (Thanks to the kindness of friends and strangers.) She did one little haul last night, taking all the books, games and DVDs, so that's out of the way.
This morning I'm just waiting for the pre-rounds meeting with the Registered Nurse, Ken, whom I love dearly, followed by the rounds at which will be attending the attending onc who manages the rounds, Dr. Flowers, Ken, 2-3 representatives of the pharmacy department, my nurse of the day, and sometimes an interning oncologist who has a sour face and a name I find utterly forgettable.
I can't believe I'm going to be able to see my beautiful Simone (gorgeous black male cat from heaven who's been inseparable from me for I think 11 years) and Louie (the most perfect puppy in the world.) I'm thrilled to death to be seeing Boo (the little, black, terrified, secret cat who literally only comes out of hiding for me) and Gracie (also terrified but still fully committed to fulfilling her role as House Diplomat.) And then of course I can't wait to see Bughead (out-of-her-freaking-mind but indescribably fun and loveable cat) and little Piccina (Italian for "little one" is the name of this scarily fearless, pain-in-the-butt pretty calico.)
Right now I'm having a lot of diarrhea-related pain, so I'm going to close here...but I'm looking forward to updating from home!!
Tuesday, November 7
Monday, November 6
Day +12 - Going Home Tomorrow???
WBC - 3.2 (up 1,600 from previous day)
Platelets - 142 (up 65 from previous day)
ANC - 163,200 (up more than 162,000 from previous day)
Hemoglobin - 11.1 (up 1,900 from previous day)
Hematocrit - 31.8 (up 5,900 from previous day)
I might be going home tomorrow!!! I'm so well engrafted, they don't think I'm getting much benefit from being in the hospital any longer. The only remaining concern is the fact that I'm still almost daily getting a fever. They say that they're sure that these are "engraftment fevers" and not any result of infection -- and they have tested literally all potential sources of infection -- so I don't see why having one more little, short term spike would be a dealbreaker on my release.....but it still could be. We'll just have to see first how I get through the night, and then how much weight should be attributed to the fever should I get another one. Very nervewracking.
The other source of concern is the very ugly case of "radiation recall" I have now on my chest and back. I've lost a couple of layers of skin, so my skin looks at best like I've been badly sunburned, and at worst like raw hamburger. They've given me a cream, but I'm going to request a different one that another patient told me worked much better for her because this one isn't doing much of anything and it's given me no relief.
I'll find out tomorrow during the morning's rounds......say a prayer!!! I WANT TO GO HOME!!!!
Platelets - 142 (up 65 from previous day)
ANC - 163,200 (up more than 162,000 from previous day)
Hemoglobin - 11.1 (up 1,900 from previous day)
Hematocrit - 31.8 (up 5,900 from previous day)
I might be going home tomorrow!!! I'm so well engrafted, they don't think I'm getting much benefit from being in the hospital any longer. The only remaining concern is the fact that I'm still almost daily getting a fever. They say that they're sure that these are "engraftment fevers" and not any result of infection -- and they have tested literally all potential sources of infection -- so I don't see why having one more little, short term spike would be a dealbreaker on my release.....but it still could be. We'll just have to see first how I get through the night, and then how much weight should be attributed to the fever should I get another one. Very nervewracking.
The other source of concern is the very ugly case of "radiation recall" I have now on my chest and back. I've lost a couple of layers of skin, so my skin looks at best like I've been badly sunburned, and at worst like raw hamburger. They've given me a cream, but I'm going to request a different one that another patient told me worked much better for her because this one isn't doing much of anything and it's given me no relief.
I'll find out tomorrow during the morning's rounds......say a prayer!!! I WANT TO GO HOME!!!!
Sunday, November 5
Later on Day +11
Quick post-rounds update: The attending onc who's on rounds now feels that we can shoot for getting me out of here somewhere around Wednesday/Thursday. Yay! They're phasing me off some of my stuff now, reducing the amount of fluids they're giving me and also cutting out a couple of the antibiotics. They'll watch my dependence on my PSA (morphine pump) and will be looking for reduced use. In order to get out of here, they're going to want to see that I can eat and drink adequately on my own, that pain and fevers are not an issue, and that my counts continue to rise so I can fight infection and all kinds of other good stuff.
The major hurtles now are the eating and drinking. They say that my mouth and throat are looking a little better, but I'm definitely still on an all liquid diet. Even oatmeal is too much for me now.....but not for long!! I predict that tomorrow I'll feel much better than today, and that an upward trend will just continue!
Man, I'm so excited! I am completely comfortable with a Wednesday/Thursday timeframe. I feel like I'll need that time to progress further, and that it will arrive before I know it!
Yay!
The major hurtles now are the eating and drinking. They say that my mouth and throat are looking a little better, but I'm definitely still on an all liquid diet. Even oatmeal is too much for me now.....but not for long!! I predict that tomorrow I'll feel much better than today, and that an upward trend will just continue!
Man, I'm so excited! I am completely comfortable with a Wednesday/Thursday timeframe. I feel like I'll need that time to progress further, and that it will arrive before I know it!
Yay!
Day +11
WBC - 1.6 (up 800 from previous day)
Platelets - 77 (up 34 from previous day)
Hemoglobin - 9.2 (down 600 from previous day)
Hematocrit - 25.9 (down 2 points from previous day)
ANC - 976 (they say this number can fluctuate up and down, but today it looks great, since 1000 is apparently the goal, and even 500 is a great number!)
Get a load of those white blood cells!!! Wooo hoooooo!! I've got a double or nothing bet on tomorrow's results which should make me poorer by 2 dollars and also absolutely joyous! I'm predicting 2.2 -- my night nurse, Mike, says 2.4. I would absolutely love to lose to him again! Today's nurse, Karen, whom I love, is going with a more aggressive 2.6. See why I love her?
Oohh! And there's something called a "Seg/Band" which is some sort of marker in the white blood cells which reflects the really important, best part of the white blood cells. Apparently you want this number to be high to get the best reflection of positive changes in the WBC, and I have a high number, apparently! There's a calculation which uses the seg numbers and the band numbers to calculate the absolute neutrophil count (ANC) which is very important in its reflection of new healthy cells. Segs + bands x total WBC = ANC. That's one way to combat chemo brain!
Now the red blood cells are not doing as well as the white, but that's ok. Angie, you asked me a couple of days ago if I'd been given any blood transfusions or platelets. I have not received any platelets (and I'm participating in a platelet study as well!) but 2 days ago I did get 2 bags of blood, as I did this morning also.
I'm happy to report that I didn't have any fevers last night! Now that is definitely a step in the right direction!
Still got the mouth/throat/head pain, so the PSA (morphine pump) is still a strong ally. I'm hoping that the hemoglobins I'll get from this morning's transfusion will increase the oxygen volume of my blood, thereby allowing my nice new white blood cells to rush to perform repair in my mouth and throat right away.
I'm going to take a nap now because I had an awful night's sleep last night. Then early this afternoon I'll get in some walking laps. With my counts going up I'm feeling much better able to get in some cardio.
I'm going to miss seeing Lorraine today, but she needs to take care of herself now and knock down that cold or flu! I'm so glad she's got a doctor's appointment tomorrow -- maybe she'll be able to get some medicinal support to speed it along before I come home. God, I can't wait to go home.....I miss everybody so much.....
Platelets - 77 (up 34 from previous day)
Hemoglobin - 9.2 (down 600 from previous day)
Hematocrit - 25.9 (down 2 points from previous day)
ANC - 976 (they say this number can fluctuate up and down, but today it looks great, since 1000 is apparently the goal, and even 500 is a great number!)
Get a load of those white blood cells!!! Wooo hoooooo!! I've got a double or nothing bet on tomorrow's results which should make me poorer by 2 dollars and also absolutely joyous! I'm predicting 2.2 -- my night nurse, Mike, says 2.4. I would absolutely love to lose to him again! Today's nurse, Karen, whom I love, is going with a more aggressive 2.6. See why I love her?
Oohh! And there's something called a "Seg/Band" which is some sort of marker in the white blood cells which reflects the really important, best part of the white blood cells. Apparently you want this number to be high to get the best reflection of positive changes in the WBC, and I have a high number, apparently! There's a calculation which uses the seg numbers and the band numbers to calculate the absolute neutrophil count (ANC) which is very important in its reflection of new healthy cells. Segs + bands x total WBC = ANC. That's one way to combat chemo brain!
Now the red blood cells are not doing as well as the white, but that's ok. Angie, you asked me a couple of days ago if I'd been given any blood transfusions or platelets. I have not received any platelets (and I'm participating in a platelet study as well!) but 2 days ago I did get 2 bags of blood, as I did this morning also.
I'm happy to report that I didn't have any fevers last night! Now that is definitely a step in the right direction!
Still got the mouth/throat/head pain, so the PSA (morphine pump) is still a strong ally. I'm hoping that the hemoglobins I'll get from this morning's transfusion will increase the oxygen volume of my blood, thereby allowing my nice new white blood cells to rush to perform repair in my mouth and throat right away.
I'm going to take a nap now because I had an awful night's sleep last night. Then early this afternoon I'll get in some walking laps. With my counts going up I'm feeling much better able to get in some cardio.
I'm going to miss seeing Lorraine today, but she needs to take care of herself now and knock down that cold or flu! I'm so glad she's got a doctor's appointment tomorrow -- maybe she'll be able to get some medicinal support to speed it along before I come home. God, I can't wait to go home.....I miss everybody so much.....
Saturday, November 4
Day +10
WBC - .8 (up 400 from previous day)
Platelets - 43 (up 25 from previous day)
As you can see, my counts are now steadily climbing upward! I feel like a superhero! I'm really looking forward to another jump tomorrow -- I fully expect to be in the 1-somethings with my WBCs...and to some upcoming pain relief accompanying the increased counts as the cells rush first to where repair is most needed.
My abdominal pain has lessened but has not left the building, and my mouth and throat continue to worsen. I'm still running a fever most of the time, which doesn't bode well for an early release, but oh well. Of course I want to go home when they think it safest -- I was just hoping that could be sooner than later.
The "radiation recall" I had before has actually RETURNED! Now does that seem fair? So I have this bright, livid purple-red square which lines up with the outside of my esophagus front and back -- all the surface outside of that vertical line was radiated and is now raw, welty and itchy again. I'm told that it will remain a very dark brown block for at least a few months, until it eventually peels off as all skin does. It's not at all the same color as the other side of my throat and chest, so it's very obvious that some fairly harsh baking has occurred!
In weight loss news, my weight on the scale is holding at the same point it was a week ago (when I stopped eating altogether [again.]) I know that at this point, I must have lost a total of at least 20-25 pounds by the way my clothes are fitting and the feel of my own body. They're loading me up with hydration since I haven't been able to eat OR drink, and I'm just retaining that fluid quite nicely. I'm STARVING and experience so much pain when I try to eat or drink, it's just WONDERFUL to get a nice benefit from this misery! Gotta love the silver lining, no?
I've asked Lorraine to bring down the exercise bike from the bonus room (our home gym) so I don't have to tackle the stairs to get in a little pedaling. I'm really going to try to get in regular exercise (in tiny, gentle doses to begin with) right from the start, and I know that those stairs are going to be too much for me for a while. I seek to remove potential barriers/excuses, not add to them! I told her to ask a friend for some help getting it downstairs -- she doesn't think it's a good idea, so I'm going to have be a hard case about it because I feel very strongly about its benefit. Later on, we can move it back upstairs, but for now, I need it handy.
And on the follicular front, my little stubbies are falling out now. My eyelashes, too, I'm sad to say. Ah well, out with the old and in with the new!
I probably won't be able to see Lorraine tomorrow because she seems to be coming down with something. My nurse and I sent her home today because she kept complaining that her throat hurt her. She's also been sneezing a lot and feeling really run-down -- and she took a 2 1/2 hour nap in my arms this afternoon when I spooned her lovely in my hospital bed. (My nurse got more than a couple of giggles out of her snoring!) She has a doctor's appointment on Monday, so hopefully he'll clear her to come back to me on Monday! I can't stand losing a day with her....
Platelets - 43 (up 25 from previous day)
As you can see, my counts are now steadily climbing upward! I feel like a superhero! I'm really looking forward to another jump tomorrow -- I fully expect to be in the 1-somethings with my WBCs...and to some upcoming pain relief accompanying the increased counts as the cells rush first to where repair is most needed.
My abdominal pain has lessened but has not left the building, and my mouth and throat continue to worsen. I'm still running a fever most of the time, which doesn't bode well for an early release, but oh well. Of course I want to go home when they think it safest -- I was just hoping that could be sooner than later.
The "radiation recall" I had before has actually RETURNED! Now does that seem fair? So I have this bright, livid purple-red square which lines up with the outside of my esophagus front and back -- all the surface outside of that vertical line was radiated and is now raw, welty and itchy again. I'm told that it will remain a very dark brown block for at least a few months, until it eventually peels off as all skin does. It's not at all the same color as the other side of my throat and chest, so it's very obvious that some fairly harsh baking has occurred!
In weight loss news, my weight on the scale is holding at the same point it was a week ago (when I stopped eating altogether [again.]) I know that at this point, I must have lost a total of at least 20-25 pounds by the way my clothes are fitting and the feel of my own body. They're loading me up with hydration since I haven't been able to eat OR drink, and I'm just retaining that fluid quite nicely. I'm STARVING and experience so much pain when I try to eat or drink, it's just WONDERFUL to get a nice benefit from this misery! Gotta love the silver lining, no?
I've asked Lorraine to bring down the exercise bike from the bonus room (our home gym) so I don't have to tackle the stairs to get in a little pedaling. I'm really going to try to get in regular exercise (in tiny, gentle doses to begin with) right from the start, and I know that those stairs are going to be too much for me for a while. I seek to remove potential barriers/excuses, not add to them! I told her to ask a friend for some help getting it downstairs -- she doesn't think it's a good idea, so I'm going to have be a hard case about it because I feel very strongly about its benefit. Later on, we can move it back upstairs, but for now, I need it handy.
And on the follicular front, my little stubbies are falling out now. My eyelashes, too, I'm sad to say. Ah well, out with the old and in with the new!
I probably won't be able to see Lorraine tomorrow because she seems to be coming down with something. My nurse and I sent her home today because she kept complaining that her throat hurt her. She's also been sneezing a lot and feeling really run-down -- and she took a 2 1/2 hour nap in my arms this afternoon when I spooned her lovely in my hospital bed. (My nurse got more than a couple of giggles out of her snoring!) She has a doctor's appointment on Monday, so hopefully he'll clear her to come back to me on Monday! I can't stand losing a day with her....
Friday, November 3
Days +8 and +9
Hello, all! I can't speak, but I can write fairly well, if a bit confusedly, I'm finding as I type and retype this. That morphine is quite something!
Great news right out of the gate is that my body has started to produce white blood cells, hematocrit cells, hemoglobin cells, and platelets! Go me!!! I've been getting high fevers at night (over 103 degrees) so they're not sure if those result from an infection or are just "engraftment fevers." They've changed my antibiotics again just to be sure. I'm told that if my counts continue to rise and the fevers abate, I'll get to go home before I'm fully engrafted. Conversely, if my counts dip down before rising again, or if the fevers continue, I'll have to stay in here longer, as they wouldn't want to release me if I were prone to fevers. Makes sense. Right now I'm just willing my body to cooperate and continue to just crank out those cells. At Emory, they don't count the cells when they are less than 300 (<300); once they fall that low, you just fall into a "bottomed out" category. My WBC this morning had risen to .4 -- great news! And, like I said, some other critical counts rose also, so I'm really happy! If this trend continues, I should see some relief to the now substantial pain in my mouth and throat, in addition to my abdomen. I really am looking forward to some relief soon, because this part is just so totally not fun!
Brian, you mentioned your having got Neupogen shots at some point after your transplant -- that isn't part of my protocol. I'm just going to have to bring them up on my own! I think I can; I think I can....
My slightly raised counts notwithstanding, I'm still hurting a lot, and am trying to sleep through the pain more often than not so the time passes more quickly. They think I'm going to start feeling better this weekend. I sure hope they're right.
In other news, I'm smiling again, if with a painful little wince each time! (Ouch!) I've been so good with my mouth care, and they know it; they say that for some people the mucositis is unavoidable, despite their best efforts, and the best you can hope for if you happen to be one of these people is to proactively reduce the severity of the mouth sores. (The esophageal and GI tract sores/ulcers will develop pretty much unhindered if they're going to, with little to do preventatively -- apart from that Kepivance drug which helps everybody but which I cannot take because of my esophageal strictures.)
That's it for now -- I have a pounding headache, so I'm going to try to catch a little shut-eye to see if that will help. I have the feeling of having bottomed out, but in the words of the attending onc, Dr. Flowers just now, that just may not be the case. Tomorrow will tell all. And here's hoping for no fevers -- engraftment-related or otherwise!
Great news right out of the gate is that my body has started to produce white blood cells, hematocrit cells, hemoglobin cells, and platelets! Go me!!! I've been getting high fevers at night (over 103 degrees) so they're not sure if those result from an infection or are just "engraftment fevers." They've changed my antibiotics again just to be sure. I'm told that if my counts continue to rise and the fevers abate, I'll get to go home before I'm fully engrafted. Conversely, if my counts dip down before rising again, or if the fevers continue, I'll have to stay in here longer, as they wouldn't want to release me if I were prone to fevers. Makes sense. Right now I'm just willing my body to cooperate and continue to just crank out those cells. At Emory, they don't count the cells when they are less than 300 (<300); once they fall that low, you just fall into a "bottomed out" category. My WBC this morning had risen to .4 -- great news! And, like I said, some other critical counts rose also, so I'm really happy! If this trend continues, I should see some relief to the now substantial pain in my mouth and throat, in addition to my abdomen. I really am looking forward to some relief soon, because this part is just so totally not fun!
Brian, you mentioned your having got Neupogen shots at some point after your transplant -- that isn't part of my protocol. I'm just going to have to bring them up on my own! I think I can; I think I can....
My slightly raised counts notwithstanding, I'm still hurting a lot, and am trying to sleep through the pain more often than not so the time passes more quickly. They think I'm going to start feeling better this weekend. I sure hope they're right.
In other news, I'm smiling again, if with a painful little wince each time! (Ouch!) I've been so good with my mouth care, and they know it; they say that for some people the mucositis is unavoidable, despite their best efforts, and the best you can hope for if you happen to be one of these people is to proactively reduce the severity of the mouth sores. (The esophageal and GI tract sores/ulcers will develop pretty much unhindered if they're going to, with little to do preventatively -- apart from that Kepivance drug which helps everybody but which I cannot take because of my esophageal strictures.)
That's it for now -- I have a pounding headache, so I'm going to try to catch a little shut-eye to see if that will help. I have the feeling of having bottomed out, but in the words of the attending onc, Dr. Flowers just now, that just may not be the case. Tomorrow will tell all. And here's hoping for no fevers -- engraftment-related or otherwise!
Wednesday, November 1
Days 5, 6, and 7
Hi. Lorraine here posting for Sarah. The past few days have been hard for Sarah as she has had severe stomach pain due to the lining of her stomach and GI tract is sloughing off.
She is taking a good amount of Morphine to help with the pain and is sleeping through the rough part.
She has had a fever, mucositis and esophagitis, her blood pressure is up and down and she has dry heaves. All of this due to her blood counts have bottomed out.
Once the stem cells start to engraft they will go straight to where her body needs the most help, so hopefully her stomach will start to feel better.
The constipation is still there so she is taking scary laxitives.
Other than these aweful things she is fine but not so Sarah Smiley.
Hope all of you are doing great. Thanks for all your love and support we both appreciate it so much!
Lorraine
She is taking a good amount of Morphine to help with the pain and is sleeping through the rough part.
She has had a fever, mucositis and esophagitis, her blood pressure is up and down and she has dry heaves. All of this due to her blood counts have bottomed out.
Once the stem cells start to engraft they will go straight to where her body needs the most help, so hopefully her stomach will start to feel better.
The constipation is still there so she is taking scary laxitives.
Other than these aweful things she is fine but not so Sarah Smiley.
Hope all of you are doing great. Thanks for all your love and support we both appreciate it so much!
Lorraine
Subscribe to:
Posts (Atom)
