Well it's day 29, an exact month from my donor date. Also, my body actually made platelets, 29,000 if you could believe it! My white blood cell count is 5.7 but that's okay, it's supposed to fluctuate. I also walked a half mile without oxygen and without the walker. Personal Fitness came along to take me on my walk she said I did great. Thanks Mom, for my new sneakers, they make my feet great, which definitely make walking easier!
I have one of my favorite nurses today, Jeanne, she's from New York. She is a great motivator, she's determined she's going to get me out this weekend. She also may have solved my nausea problem! For me, one nausea medicine worked the best but would wipe me out for hours. So Jeanne tells me, she's up at 4:00 in the morning she took a quick trip to the bathroom and it hit her, "Marinol, why haven't we tried that?" So seven am rolls around and their's Jeanne saying I think I know what we can do for your nausea, I just have to convince the Doctors. For now, you need to go have a chest x-ray, when you come back I should have everything in place.
Sure enough, I came back to Jeanne with my Marinol and a yogurt, she wanted me to start my breakfast small. Once she was sure I could handle it she gave me the rest of my meal. For once I kept everything down and didn't feel like I'm going to puke at any moment. Even more exciting they are starting to strip a way my iv drugs so pretty soon I won't be on a iv pole all!
In closing, thank you to the Volmer for the nice card. Mom, the doctors are commenting that the amount of animals are growing in here (thanks for Gus the Gecko) but they also seem to like them. Anyway, thank you for all the love support and prayers, it does make a difference. Much love from 9215
Thursday, March 29, 2012
Wednesday, March 28, 2012
Day + 28
Wow, a few days have passed since my last blog, sorry about that, I've been busy. As it turned out we didn't get to do the Bronchoscopy on Monday morning because my platelets were too low. So we waited until Tuesday so they could keep pumping me full of platelets. It turns out platelets don't like heat so the fact that I was in a constant fever over the weekend certainly didn't help things.
However, at the eleventh hour the Doctors agreed to move forward with the procedure. Well actually I should say procedures, besides the biopsy they also withdrew two large samples of fluid from my lung. They had me sit up and hold real still, they numbed the section and with a small needle they sucked fluid straight from my back. It was freaky being awake for it I was so afraid I was going to moved and mess up the whole thing! Next they started to prep me for the biopsy which requires spraying this nasty stuff down my throat to kind of numb the pain, this is so they can put the camera down my throat into my lungs. Well I forgot to mention that my nausea had returned and I almost puked on the Doctor! Oops! Once they got me some nausea drugs they were able to continue but at this point I am sedated. Once I was in recovery they kept me in forever, not sure why, eventually they brought me a cup of ice, keep in mind I've now gone almost two days without eating or drinking! Eventually they sent me back up to my room where I could hardly keep my eyes open, too many drugs.
The next thing I know two Dermatologist came in to do some biopsy's on my skin. Turns out the Infectious Disease Doctors thought the rash or spots could actually be fungus. So as I ate my first treat of the day (cherry Popsicle) they cut two pieces of skin from my arms. Now I have stitches that look like spiders. Crazy huh? we were just hoping to get one biopsy but I got more than I bargained for!
In good news, my fevers have broken and my white blood count is at 6,9! Also yesterday I finally got out of bed and took a walk, it was so difficult to move without feeling pain. It took three of us to move along with my iv pole, and oxygen and I used this sort of walker thing that allowed me to stay straight up and made me feel more control. I only did a half mile but it's a start. I am going to go again today and as much as I can until my strength is back up.
I would also like to thank Jackie, Cameryn & Jayden Tatman for the nice book and super soft lamb, he's a great sleeping partner. It's so nice knowing how much love and support I have out there. Well that's it for today, sorry for the super long blog I needed to update you on the past few days. Thanks again to all of you who have reached out through cards, prayers, emails and positive thoughts. Much love from 9215.
However, at the eleventh hour the Doctors agreed to move forward with the procedure. Well actually I should say procedures, besides the biopsy they also withdrew two large samples of fluid from my lung. They had me sit up and hold real still, they numbed the section and with a small needle they sucked fluid straight from my back. It was freaky being awake for it I was so afraid I was going to moved and mess up the whole thing! Next they started to prep me for the biopsy which requires spraying this nasty stuff down my throat to kind of numb the pain, this is so they can put the camera down my throat into my lungs. Well I forgot to mention that my nausea had returned and I almost puked on the Doctor! Oops! Once they got me some nausea drugs they were able to continue but at this point I am sedated. Once I was in recovery they kept me in forever, not sure why, eventually they brought me a cup of ice, keep in mind I've now gone almost two days without eating or drinking! Eventually they sent me back up to my room where I could hardly keep my eyes open, too many drugs.
The next thing I know two Dermatologist came in to do some biopsy's on my skin. Turns out the Infectious Disease Doctors thought the rash or spots could actually be fungus. So as I ate my first treat of the day (cherry Popsicle) they cut two pieces of skin from my arms. Now I have stitches that look like spiders. Crazy huh? we were just hoping to get one biopsy but I got more than I bargained for!
In good news, my fevers have broken and my white blood count is at 6,9! Also yesterday I finally got out of bed and took a walk, it was so difficult to move without feeling pain. It took three of us to move along with my iv pole, and oxygen and I used this sort of walker thing that allowed me to stay straight up and made me feel more control. I only did a half mile but it's a start. I am going to go again today and as much as I can until my strength is back up.
I would also like to thank Jackie, Cameryn & Jayden Tatman for the nice book and super soft lamb, he's a great sleeping partner. It's so nice knowing how much love and support I have out there. Well that's it for today, sorry for the super long blog I needed to update you on the past few days. Thanks again to all of you who have reached out through cards, prayers, emails and positive thoughts. Much love from 9215.
Sunday, March 25, 2012
Day + 25
Good evening family and friends, I hope you had a great weekend. I I spent mine puking, sleeping, trying to fight of fevers and my lung infection. Tonight I will be prepping for the Bioscopy, this could finally give us some more insight on the pneumonia or fungus in my lungs. The only thing is I heed my platelet count to be at 50,000 and right now they are at 21,000. So it sounds like I'll be getting three bags. So let's pray that my body accepts the platelets so we can do this biopsy and start attacking this lung fungus.
Well I'm going to sign off for now, I keep falling asleep and then I mistakenly erase the whole blog! Maybe I shouldn't write the blog so late! Much love from 9215!
Well I'm going to sign off for now, I keep falling asleep and then I mistakenly erase the whole blog! Maybe I shouldn't write the blog so late! Much love from 9215!
Saturday, March 24, 2012
Day + 24
Hello everyone, I'm sorry for the lack of blogs. While it's not confirmed the Doctors pretty much feel that I have pneumonia. They have added another anti-fungal medicine. What they really want to do is a Bronchoscopy. In order to do that I have to have 50,000 platelets, this way they can pull sample of the fungus from my lungs without fear that my lungs would bleed.
Meanwhile, I am battling 103 degree temperatures. I sleep with ice packs like I'm an Eskimo The fevers give me nausea and headaches. Through out the night I'm constantly providing blood cultures or chest x-rays and receiving blood or platelets. That's why I'm really hoping we can do the Bronchoscopy on Monday. Just so we can finally get some answers and treat this thing!
In positive news, my white blood cell count is at 4.8, that with the combination of my fever it may mean my immune system is working. Yippie! I also have to give a few shout outs for the fun gifts I've received this week. Thank you Pam, Jim, Alice & Bob, for all the wonderful activities crayons, and there's still more I haven't even opened yet! I passed out with the package in bed last night. Plus, Thank you Kristina Acuna I absolutely love the scarf and make up bag, gotta love Sam Moon! I'm wearing scarf as I write this.
All in all I think my body is fighting hard to get rid of this infection. I'm staying positive and doing what limited exercise I can do for now. Eric has been a great motivator making sure I push my self but not to much. He is such a rock for me and I'm so thankful we have each other to make it through this time. Well that's it for now, much love from 9215.
Meanwhile, I am battling 103 degree temperatures. I sleep with ice packs like I'm an Eskimo The fevers give me nausea and headaches. Through out the night I'm constantly providing blood cultures or chest x-rays and receiving blood or platelets. That's why I'm really hoping we can do the Bronchoscopy on Monday. Just so we can finally get some answers and treat this thing!
In positive news, my white blood cell count is at 4.8, that with the combination of my fever it may mean my immune system is working. Yippie! I also have to give a few shout outs for the fun gifts I've received this week. Thank you Pam, Jim, Alice & Bob, for all the wonderful activities crayons, and there's still more I haven't even opened yet! I passed out with the package in bed last night. Plus, Thank you Kristina Acuna I absolutely love the scarf and make up bag, gotta love Sam Moon! I'm wearing scarf as I write this.
All in all I think my body is fighting hard to get rid of this infection. I'm staying positive and doing what limited exercise I can do for now. Eric has been a great motivator making sure I push my self but not to much. He is such a rock for me and I'm so thankful we have each other to make it through this time. Well that's it for now, much love from 9215.
Wednesday, March 21, 2012
Day + 21
Good News, my white blood cell count is at 3.3! They have been giving me a shot to stimulate the growth and man did it work. Now if only we could figure out this lung infection, we would be on our way out of here. I'm eating on my own now, only using oxygen when absolutely necessary and I even got out for a half mile walk today. One of my favorite nurses Jeanie is telling me we should be discharged next week. That makes me a little nervous because this infection really makes me feel like crap. I keep telling myself it's my white blood cells doing their job but I also want to know what the infection is so we can treat it accurately.
Yesterday, I was scheduled for a Bronchoscopy where they were planning on removing a piece of the fungus but my platelet count was too low and the docs were afraid of causing my lungs to bleed without platelets my blood wouldn't clot properly to control the bleeding. So the doctors decided to do a wash of my lungs so they could take out some of the fluid and then sit it in a petri dish to try and grow the fungus. The only problem is that takes time! I'm being treated with a catch all fungal antibiotic, perhaps, this catch all combined with my white blood cells will heal me. Honestly, I don't want to be released with the infection. I tend to get wicked fevers at night, to the point where I sleep with ice packs. Plus, taking large breathes makes both lungs hurt, it feels like my ribs and lungs are being stepped on by some crazy Dr. Martin Boots with spikes on them.
Sorry for going in to so much description there, I think I just needed to get it out. I'm still keeping positive and know that this pain will pass. So now on to fun positive news. I want to thank my girl Jen Jones for sending me an Angel of Strength, she said it's not because I need it, it's just because you are strong. That was really cool Jen, can't wait until we can get together once I'm back in Charlotte, we'll discuss the Hunger Games movie. Jen is the fabulous woman who introduced me to the Hunger Games trilogy.
And another shout out goes to Colby, you may recall he send me a cool vinyl, cd, ipod, stereo. Well now he has given me my first vinyls for my collection. Thank you very much sir! Also. I really appreciate the cards of positive prayers and hope, they keep me smiling. I really couldn't ask for a better support group. Well that's it for now, much love to you all from 9215.
Yesterday, I was scheduled for a Bronchoscopy where they were planning on removing a piece of the fungus but my platelet count was too low and the docs were afraid of causing my lungs to bleed without platelets my blood wouldn't clot properly to control the bleeding. So the doctors decided to do a wash of my lungs so they could take out some of the fluid and then sit it in a petri dish to try and grow the fungus. The only problem is that takes time! I'm being treated with a catch all fungal antibiotic, perhaps, this catch all combined with my white blood cells will heal me. Honestly, I don't want to be released with the infection. I tend to get wicked fevers at night, to the point where I sleep with ice packs. Plus, taking large breathes makes both lungs hurt, it feels like my ribs and lungs are being stepped on by some crazy Dr. Martin Boots with spikes on them.
Sorry for going in to so much description there, I think I just needed to get it out. I'm still keeping positive and know that this pain will pass. So now on to fun positive news. I want to thank my girl Jen Jones for sending me an Angel of Strength, she said it's not because I need it, it's just because you are strong. That was really cool Jen, can't wait until we can get together once I'm back in Charlotte, we'll discuss the Hunger Games movie. Jen is the fabulous woman who introduced me to the Hunger Games trilogy.
And another shout out goes to Colby, you may recall he send me a cool vinyl, cd, ipod, stereo. Well now he has given me my first vinyls for my collection. Thank you very much sir! Also. I really appreciate the cards of positive prayers and hope, they keep me smiling. I really couldn't ask for a better support group. Well that's it for now, much love to you all from 9215.
Monday, March 19, 2012
Day +19
Well today was a bit frustrating, I was told Sunday that come midnight I would have to give up food and water in preparation for a Bronchoscopy early Monday morning. Well 8:00am rolled around and we weren't being called down. My team of doctors completed their rounds and we sill hadn't heard anything. Needless to say I was starving and parched and a little cranky by this point. Plus, this whole time I'm suffering from pain, every breath in feels like a kick in the ribs.
But there is some silver lining in our day today, my white count is .23 so it's moving in the right direction. The Doctors also started me on nutrapin shot which is going to give me a boost of white counts. And one more thing, I'm off the TPN bag! Now I have to keep a food journal and track my daily grams of protein and calories.
So I've been bed ridden most of the day thanks to off and on fevers, which is why we really want to get this bronchospy started so we can figure out how to treat the problems.
I hope this find your self relaxing, with your loved ones. Much love from 9215.
But there is some silver lining in our day today, my white count is .23 so it's moving in the right direction. The Doctors also started me on nutrapin shot which is going to give me a boost of white counts. And one more thing, I'm off the TPN bag! Now I have to keep a food journal and track my daily grams of protein and calories.
So I've been bed ridden most of the day thanks to off and on fevers, which is why we really want to get this bronchospy started so we can figure out how to treat the problems.
I hope this find your self relaxing, with your loved ones. Much love from 9215.
Sunday, March 18, 2012
Day + 18
Well we started off today with some awesome news, my white blood count is .2 this is what we have been waiting for some movement towards 1. Then we got some bad news, it turns out I have a fungal infection in my lungs which is what has been causing the sharp pain in my side and lower lungs. In a way it's not bad, because when we have healthy immune systems it's common to have fungus in our lungs they are just maintained by our immune system. Plus, Duke responded amazingly, I had a chest x-ray and a ekg in the middle of the night and early this morning they took me for a cat scan. They quickly spotted the fungus and started me on medication almost immediately.
Tomorrow, I will have a another Bronchoscope, this way they can get a better look. Hey at least if I have to get a fungus now's the time to do so.
In other news, they are working on my discharge plan, I have to start recording my food in take, most importantly protein and I need to incorporate supplements to grow my strength. Doing this will get me off the TPN which will get me one step out of here!
That's it for now, I'm hanging in there staying positive and hopeful for a speedy recovery. Much love 9215.
Saturday, March 17, 2012
Day + 17
Happy St. Patty's Day! I hope you are all celebrating in style, Eric went all out and made corn beef and cabbage for himself, he's quite the cook! It's been a couple of quiet days for me, I've been bouncing between fevers and basically feel like I've been run over by a semi truck. I fell yesterday so now I'm restricted on my movement, I didn't hurt myself but they don't like to take any chances. I spent all day yesterday in bed and pretty much all of today as well. I have lots of pain in my bones which is a sign of engraftment, so are the fevers, if I have to lay low for a couple of days then so be it, whatever will get my white blood cells growing.
I figure I have to come out of this weekend with at least some white blood cells, because I'm kind of behind the curve now, they expect to see something on day 14. I guess it goes to show you just how individualized this process is, originally I was a head of the curve now I'm falling behind, but I'm not discouraged.
The only super disappointing thing for me today is they made me give up my cold water. I have to drink Gatorade now. I will chug cold water until the cows come home so this is hard for me. But it turns out all my water could have been causing my breathing issues and I wasn't really properly hydrating myself. I need more electrolytes and sodium.
Well dinner is here, this will be the first meal I attempt to eat today. Everything taste funny like it's laced in phlegm. I hope you have a great St. Patty's Day! Much love from 9215
I figure I have to come out of this weekend with at least some white blood cells, because I'm kind of behind the curve now, they expect to see something on day 14. I guess it goes to show you just how individualized this process is, originally I was a head of the curve now I'm falling behind, but I'm not discouraged.
The only super disappointing thing for me today is they made me give up my cold water. I have to drink Gatorade now. I will chug cold water until the cows come home so this is hard for me. But it turns out all my water could have been causing my breathing issues and I wasn't really properly hydrating myself. I need more electrolytes and sodium.
Well dinner is here, this will be the first meal I attempt to eat today. Everything taste funny like it's laced in phlegm. I hope you have a great St. Patty's Day! Much love from 9215
Thursday, March 15, 2012
Day + 15
Hello everyone, I hope today finds you feeling good! I'm feeling good for the second day in a row. Just dealing with nose bleeds and phlegm and of course my hallucinations (balls or swirling light and letters and the occasional music). Today might be my last day on steroids so hopefully I won't be seeing or hearing things any more. I would also love to stop getting pricked for blood sugar, receiving insulin shots and high blood pressure medicine. A girl can dream right?
I'm just happy to have good spirits and be heading in the right direction. My daily chest x-ray shows improvement and now I'm finally coughing up some of my phlegm which is nice. I've been eating regular foods now along with the TPN so I think soon I'll be off of that soon. They are already lowering the oxygen I am on so everything is going in good. The Doctors said they think I have turned my corner towards really bouncing back! I know it's thanks to all the doctors, nurses and definitely all the positive thoughts and prayers from all of you that have helped me get this far!
Speaking of thanks, I want to give my Cousin Colby an awesome shout out, he got me a kick ass Crosley Radio turntable! It plays vinyl, Cd's, iPod, and iPhone! Seriously man, I feel cooler having it in our possession. Plus, it solves our lack of music problem in the apartment! Also, I want to thank my Mom for sending me the cutest Ernie doll, wishing me a happy 32 years + 2 week birthday. As some of you know my first jeep was an old silver Cherokee that I named Ernie, I had a little tip cup asking for gas money for Ernie, he was a good old jeep.
All in all I had a great birthday, and so many wonderful well wishes it makes me feel so blessed and loved. This may be a hard time but it sure has taught me how strong love is and how much we all need to feel loved. That's it for today, make sure to tell your loved ones just how much you love them. Peace out from 9215.
I'm just happy to have good spirits and be heading in the right direction. My daily chest x-ray shows improvement and now I'm finally coughing up some of my phlegm which is nice. I've been eating regular foods now along with the TPN so I think soon I'll be off of that soon. They are already lowering the oxygen I am on so everything is going in good. The Doctors said they think I have turned my corner towards really bouncing back! I know it's thanks to all the doctors, nurses and definitely all the positive thoughts and prayers from all of you that have helped me get this far!
Speaking of thanks, I want to give my Cousin Colby an awesome shout out, he got me a kick ass Crosley Radio turntable! It plays vinyl, Cd's, iPod, and iPhone! Seriously man, I feel cooler having it in our possession. Plus, it solves our lack of music problem in the apartment! Also, I want to thank my Mom for sending me the cutest Ernie doll, wishing me a happy 32 years + 2 week birthday. As some of you know my first jeep was an old silver Cherokee that I named Ernie, I had a little tip cup asking for gas money for Ernie, he was a good old jeep.
All in all I had a great birthday, and so many wonderful well wishes it makes me feel so blessed and loved. This may be a hard time but it sure has taught me how strong love is and how much we all need to feel loved. That's it for today, make sure to tell your loved ones just how much you love them. Peace out from 9215.
Wednesday, March 14, 2012
Day + 14
Hello everyone, today I am feeling the best I have felt since my fever spiked! The only side affects that are causing me trouble are from the steroids so far they have given me the following: high blood pressure, high blood sugar, vision spots and may be what's causing my breathing issues, oh and I hallucinate and hear music that is not there! I don't know why athletes even try the stuff dealing with the side affects is enough trouble, I have to have my blood levels checked all the time which hurts and I am getting insulin shots!
Now for the good news, I have been keeping down food and was so excited to tell the doctors that I pooped all on my own! They were going to give me a stool softener but that just creates a mess so I really had to prove my self and I think my birthday dinner and cake did the trick! Also more good news there is no blood in my lungs and my heart is functioning exactly as it should. Now we just have to figure out my breathing problem, it's hard being short of breath all the time, even from the smallest things like rolling over!
I've spent the morning doing bills and that just wears me out so I'm getting ready for a nap, I'm thinking I'll get at least my 7 laps in right before dinner and then take a shower so it will give me a full mile of activity for the day. Oh and pretty soon I should be growing some white blood cells, my bones are hurting and that's one of the signs! Pray for white blood cells, I keep telling them to grow and that I'll be good to them. Thanks for all the support and prayers. Much love from 9215!
P.S. I'm going to try and upload a picture of the beautiful bow mom found for me. Eric wishes it would blow away but I think it's kind of cute. :)
Now for the good news, I have been keeping down food and was so excited to tell the doctors that I pooped all on my own! They were going to give me a stool softener but that just creates a mess so I really had to prove my self and I think my birthday dinner and cake did the trick! Also more good news there is no blood in my lungs and my heart is functioning exactly as it should. Now we just have to figure out my breathing problem, it's hard being short of breath all the time, even from the smallest things like rolling over!
I've spent the morning doing bills and that just wears me out so I'm getting ready for a nap, I'm thinking I'll get at least my 7 laps in right before dinner and then take a shower so it will give me a full mile of activity for the day. Oh and pretty soon I should be growing some white blood cells, my bones are hurting and that's one of the signs! Pray for white blood cells, I keep telling them to grow and that I'll be good to them. Thanks for all the support and prayers. Much love from 9215!
P.S. I'm going to try and upload a picture of the beautiful bow mom found for me. Eric wishes it would blow away but I think it's kind of cute. :)
Tuesday, March 13, 2012
Day + 13
Hello Eveyone, I am bag and writing my own blog on my birthday! It's been a busy day, it started with an 8:00 am Bronchoscopy, where they literally send a probe with a camera through each airway in your lungs, next they flush out one area at a time to check for any blood or damage, they repeat this process until they get to the end and they try to suck up as much of the fluid as possible. Luckily, they gave me two medicines one to put me to sleep and one to make me not remember what happened. It's not like going totally under just enough to last about 15 minutes which is all the time they need. Although there was some delay in getting started because they couldn't get their projector on! I looked up and immediately saw the problem; "Well it's not an Epson that's the first problem." it was an NEC (boo hiss)! I told him my husband works for Epson so we might have to work on getting Duke to do an upgrade. Eventually, they turned the machine worked manually so it was just a remote issue which required a tall person to fix.
After that, Eric came up with birthday treats and gifts! I really wanted him to pick out some charms for my Pandora which he did and took my whole bracelet for me so it could be cleaned. He picked out the most beautiful cupcake, a bead with all orange lady bugs, and a beaded bead with orange as the main color. If you all remember orange is for the fight for Leukemia. They are perfect and I love them so much, plus the deal for this month was spend so much and get a free bracelet! Then he hands me another Pandora bag holding a gift card from my inlaws! Let's go shopping! I am one spoiled woman. To top it all off, I got cornbread muffins for breakfast and an angel food cake for desert! What a husband, I'm so thankful to have found and married him, he's my soul mate, my best friend and constant supporter.
Well my dinner tray awaits, I'm having Country Fried Steak, this one's for you Grandma! Much love to you all, thanks for all the prayers and support I can't wait until I can see you all again as a healthy woman! Peace out from 9215!
After that, Eric came up with birthday treats and gifts! I really wanted him to pick out some charms for my Pandora which he did and took my whole bracelet for me so it could be cleaned. He picked out the most beautiful cupcake, a bead with all orange lady bugs, and a beaded bead with orange as the main color. If you all remember orange is for the fight for Leukemia. They are perfect and I love them so much, plus the deal for this month was spend so much and get a free bracelet! Then he hands me another Pandora bag holding a gift card from my inlaws! Let's go shopping! I am one spoiled woman. To top it all off, I got cornbread muffins for breakfast and an angel food cake for desert! What a husband, I'm so thankful to have found and married him, he's my soul mate, my best friend and constant supporter.
Well my dinner tray awaits, I'm having Country Fried Steak, this one's for you Grandma! Much love to you all, thanks for all the prayers and support I can't wait until I can see you all again as a healthy woman! Peace out from 9215!
Monday, March 12, 2012
Monday March 12th, 2012 or Day +12
Good morning everyone,
Jenn had a very rough weekend and thus no blog updates these past few days... She is experiencing fluid in her lungs and that has made her quite weak. She is having the pulmonary team come today to examine her chest with a probe to see if the fluid is water or blood. That should be completed by this afternoon. The doctors aren't too sure which it is, but said that this happens occasionally with Bone Marrow Transplants.
Jenn will be getting steroids today to help with the clearing of her lungs and once the Pulmonary team inspects them, they will start more aggressive treatments depending on what fluid is in her lungs.
This has Jenn quite weak and to be 100% honest has her quite worried. The Doctors and myself have been reassuring her that everything is ok and that temporarily makes her feel better. She really is doing ok, but this stuff is all quite scary. She is hooked up to an oxygen machine and a vitals monitor to make sure her oxygen levels are suitable and not falling too low. She is resting as much as possible and eats very little, so in case Jenn didn't put this in an earlier blog, she is on a nutrition IV as well to help keep her fed.
All in all she is at the bottom between her Immune System being completely wiped out and the new donors stem cells should be grafting here in the next couple of days, which should make Jenn start to feel better. The team here at Duke is doing an excellent job and the nursing staff really gives Jenn a ton of attention; so she is in very capable hands.
Please keep Jenn in your prayers and keep sending the well wishes, all the cards make Jenn feel much better and stronger so keep them coming!!
Thanks everyone and lots of love from room 9215!!
Jenn had a very rough weekend and thus no blog updates these past few days... She is experiencing fluid in her lungs and that has made her quite weak. She is having the pulmonary team come today to examine her chest with a probe to see if the fluid is water or blood. That should be completed by this afternoon. The doctors aren't too sure which it is, but said that this happens occasionally with Bone Marrow Transplants.
Jenn will be getting steroids today to help with the clearing of her lungs and once the Pulmonary team inspects them, they will start more aggressive treatments depending on what fluid is in her lungs.
This has Jenn quite weak and to be 100% honest has her quite worried. The Doctors and myself have been reassuring her that everything is ok and that temporarily makes her feel better. She really is doing ok, but this stuff is all quite scary. She is hooked up to an oxygen machine and a vitals monitor to make sure her oxygen levels are suitable and not falling too low. She is resting as much as possible and eats very little, so in case Jenn didn't put this in an earlier blog, she is on a nutrition IV as well to help keep her fed.
All in all she is at the bottom between her Immune System being completely wiped out and the new donors stem cells should be grafting here in the next couple of days, which should make Jenn start to feel better. The team here at Duke is doing an excellent job and the nursing staff really gives Jenn a ton of attention; so she is in very capable hands.
Please keep Jenn in your prayers and keep sending the well wishes, all the cards make Jenn feel much better and stronger so keep them coming!!
Thanks everyone and lots of love from room 9215!!
Friday, March 9, 2012
Day + 9
Good Morning, I'm feeling great today and I hope you can say the same! After a long night of trial and error we finally found the right amount of pain medicine for my throat and mouth. Which is awesome because even though I didn't get much sleep, I've been able to shower and keep down oatmeal for breakfast. The only down side right now is the chemo effects are starting to kick in, I'm loosing hair and everything tastes like salt. When you look at the big picture that's nothing. My doctors are telling me I'm responding exactly as I should and that it won't be too much longer before I start growing white blood cells!
It's such a relief knowing that we solved my nutrition and pain problems. I'll still have a few bad days here and there but now I can manage the pain, instead of feeling hopeless. I even walked two miles yesterday to make up for Wednesday when I couldn't even get out of bed. That's probably why I still feel rested, after my evening walk I basically passed out, in a good way. One of the side effects of my pain medicine is itchy skin so I'm doing my best to resist the urge to scratch. The lightest itch can make me bruise or bleed. Luckily, my red blood cells and platelets are holding steady.
Thank you all for the continued support through cards, emails and Facebook messages. It makes me feel so good that so many people are pulling for me. Plus, I know that keeping a positive attitude is what helps me recover the way I have. So thank you for all the love which is definitely helping me recover and become stronger every day. I'm so blessed with all the love I have in my life, so again thank you.
One more thing, please send thoughts and prayers for my step-dad Mike, he just had a surgery on his knee and was released home yesterday. I know how much the power of prayers and positive thoughts can effect a persons recovery. We need Mike to be able to heal quickly so he can get back to doing the things he loves, like Golf!
That's it for today, I hope your day flies by so you can enjoy the weekend! Much love from 9215.
It's such a relief knowing that we solved my nutrition and pain problems. I'll still have a few bad days here and there but now I can manage the pain, instead of feeling hopeless. I even walked two miles yesterday to make up for Wednesday when I couldn't even get out of bed. That's probably why I still feel rested, after my evening walk I basically passed out, in a good way. One of the side effects of my pain medicine is itchy skin so I'm doing my best to resist the urge to scratch. The lightest itch can make me bruise or bleed. Luckily, my red blood cells and platelets are holding steady.
Thank you all for the continued support through cards, emails and Facebook messages. It makes me feel so good that so many people are pulling for me. Plus, I know that keeping a positive attitude is what helps me recover the way I have. So thank you for all the love which is definitely helping me recover and become stronger every day. I'm so blessed with all the love I have in my life, so again thank you.
One more thing, please send thoughts and prayers for my step-dad Mike, he just had a surgery on his knee and was released home yesterday. I know how much the power of prayers and positive thoughts can effect a persons recovery. We need Mike to be able to heal quickly so he can get back to doing the things he loves, like Golf!
That's it for today, I hope your day flies by so you can enjoy the weekend! Much love from 9215.
Thursday, March 8, 2012
Day + 8
Hi everyone, sorry I skipped the blog yesterday, Day +7 was pretty tough. My puking returned along with a killer sore throat. My throat is basically raw and feels like it's covered in blisters, they were giving me morphine but it didn't seem to help at all. According to the doctors this is completely normal, I probably won't begin to really feel better until late next week. My progress is still really good, I've been able to hold strong with my platelets and red blood cells and hopefully next week my white blood cells will start to grow.
Today started out a little rough, my sore throat makes taking pills, eating and drinking nearly impossible. Then I started puking again, since one of the chemo side effects makes me lactose intolerant. As I mentioned before the morphine wasn't doing anything for me so now they have me on a Dilaudid PCA, which means all I have to do is push a button and I get a little dose to manage my pain. It's good that I have this since I'm starting to get some small sores in my mouth in addition to the big ones in my throat.
I was able to get a good nap in and finally finish watching Charlie Wilson's War so the afternoon was quite pleasant. I guess that's it for now, I hope your day went well. Thanks for the continued support through prayers, thoughts and cards. Love from 9215.
Today started out a little rough, my sore throat makes taking pills, eating and drinking nearly impossible. Then I started puking again, since one of the chemo side effects makes me lactose intolerant. As I mentioned before the morphine wasn't doing anything for me so now they have me on a Dilaudid PCA, which means all I have to do is push a button and I get a little dose to manage my pain. It's good that I have this since I'm starting to get some small sores in my mouth in addition to the big ones in my throat.
I was able to get a good nap in and finally finish watching Charlie Wilson's War so the afternoon was quite pleasant. I guess that's it for now, I hope your day went well. Thanks for the continued support through prayers, thoughts and cards. Love from 9215.
Tuesday, March 6, 2012
Day + 6
Happy Tuesday everyone! I am so happy to report that, for once, I don't have any nausea! However, I am now dealing with nose bleeds and phlegm. Still not as bad as nausea. I just received my second to last dose of chemo and it was the tiniest amount, the nurse gave it to me in a syringe! I've had two bags of platelets and I might need another bag given my nose bleeds. I have more energy and I'm in good spirits. The only bad thing is I have to go onto TPN, total paternal nutrition because I'm not eating enough. I will still eat regular meals but the IV TPN will give me the boost I need to get out of here.
I think I have another two weeks left in the hospital, which is nice to think about. I just have to keep working hard so I can be released and once I am released I have to keep up with my regimen so I don't get checked back into the hospital.
I'm sad to report that the Sabres did not win last night, I still love them even though it's been a pretty bad season. Well I guess that's all I have to report. I hope you all have a fabulous Tuesday! Much love from 9215.
I think I have another two weeks left in the hospital, which is nice to think about. I just have to keep working hard so I can be released and once I am released I have to keep up with my regimen so I don't get checked back into the hospital.
I'm sad to report that the Sabres did not win last night, I still love them even though it's been a pretty bad season. Well I guess that's all I have to report. I hope you all have a fabulous Tuesday! Much love from 9215.
Monday, March 5, 2012
Day + 5
Today was a puke free day! I still have constant nausea but I was able to keep three meals down which I haven't done since before the transplant. I still feel really tired because my counts are still down so I spent most of the day sleeping again but I did make myself walk a mile and take a shower. I know taking a shower doesn't seem like much but when you feel the way I do now you don't even want to get out of the bed. Any movement is a reminder of the awful feeling in my stomach.
Unfortunately, I keep finding crazy bruises on my body that make me look like I've been in a fight. That's normal since I don't have a full immune system yet. The good thing is I don't have any rashes which is the first sign of graft vs. host disease. According to the doctors, I am doing great even though it doesn't always feel that way. If I'm counting my days right I should hopefully have my counts back up the week of my birthday so hopefully the nausea will be gone by then.
Not much else to say, I want to shout out a little good luck to the Buffalo Sabres who play tonight, if we win there's a chance for playoffs! Lets-Go-Buff-a-l-o! Much love from 9215.
Unfortunately, I keep finding crazy bruises on my body that make me look like I've been in a fight. That's normal since I don't have a full immune system yet. The good thing is I don't have any rashes which is the first sign of graft vs. host disease. According to the doctors, I am doing great even though it doesn't always feel that way. If I'm counting my days right I should hopefully have my counts back up the week of my birthday so hopefully the nausea will be gone by then.
Not much else to say, I want to shout out a little good luck to the Buffalo Sabres who play tonight, if we win there's a chance for playoffs! Lets-Go-Buff-a-l-o! Much love from 9215.
Sunday, March 4, 2012
Day + 4
Hello everyone, sorry for the late posting. I've spent most of the day sleeping but I only puked once so that's good. Still feeling queezy and I haven't eaten much today so I'm hoping I can just sleep off the nausea.
Regardless, the doctor says I'm progressing as I should, it will be another two weeks before my blood counts return so I think I'm going to be feeling like this for awhile. I still have it a little easier than most since I'm young I don't have as many health complications.
Well that's it for today, time to request some anti-nausea drugs and go back to sleep. Much love from 9215.
Regardless, the doctor says I'm progressing as I should, it will be another two weeks before my blood counts return so I think I'm going to be feeling like this for awhile. I still have it a little easier than most since I'm young I don't have as many health complications.
Well that's it for today, time to request some anti-nausea drugs and go back to sleep. Much love from 9215.
Saturday, March 3, 2012
Day + 3
Hello Friends & Family, I hope you are having a relaxing weekend. Again, I'm sorry for the late blog, I took a lazy day today. Unfortunately, I puked four times today but I have an awesome nurse who has been fixing me small simple meals all day so I don't go hungry. I've decided from now on I'm only ordering bland small snacks instead of three meals a day. My nurse gave me a snack menu that I can use for in between meals and she made me a nice protein smoothie.
I even took a nice three hour nap and felt energized once I woke up. My blood counts are at zero so I really should have no energy at all. I think it really helps when I walk, today was the first time since the transplant that I was able to walk a mile straight instead of breaking it up into two walks. I'm not quite ready to attempt two miles but it's a goal I'll work towards.
Well there's not much else to report. I've been receiving beautiful cards of encouragement which always bring a smile to my face. I am truly blessed to have such an amazing support group, so thank you to all of you! Much love from 9215.
I even took a nice three hour nap and felt energized once I woke up. My blood counts are at zero so I really should have no energy at all. I think it really helps when I walk, today was the first time since the transplant that I was able to walk a mile straight instead of breaking it up into two walks. I'm not quite ready to attempt two miles but it's a goal I'll work towards.
Well there's not much else to report. I've been receiving beautiful cards of encouragement which always bring a smile to my face. I am truly blessed to have such an amazing support group, so thank you to all of you! Much love from 9215.
Friday, March 2, 2012
Day + 2
I haven't puked today, yay! Sorry for the late blog, I didn't want to jinx my puke free day. Today has been pretty good, I still have constant nausea but I'm learning to deal with it, usually I sleep it off as much as possible.
I received a surprise gift from my donor today, as if she hasn't given me enough! The Bone Marrow center brought me a cute jewelry box, when I opened it there was a note addressed, To My 'cell mate', which made me laugh. Her note mentioned how happy she was to be able to donate her cells and wanted to send furry versions to match the ones floating around inside me. I now have a stuffed Red Blood cell, White Blood cell, Stem cell and a Platelet. They are hilarious they have little eyes but they are the exact shape of the cells I received. I'm posting a picture so hopefully you can see how cute it is. I think we will get along really well once the year passes and we are allowed to meet.
Well that's it for today, I hope you have a great weekend! Much love from 9215!
I received a surprise gift from my donor today, as if she hasn't given me enough! The Bone Marrow center brought me a cute jewelry box, when I opened it there was a note addressed, To My 'cell mate', which made me laugh. Her note mentioned how happy she was to be able to donate her cells and wanted to send furry versions to match the ones floating around inside me. I now have a stuffed Red Blood cell, White Blood cell, Stem cell and a Platelet. They are hilarious they have little eyes but they are the exact shape of the cells I received. I'm posting a picture so hopefully you can see how cute it is. I think we will get along really well once the year passes and we are allowed to meet.
Well that's it for today, I hope you have a great weekend! Much love from 9215!
Thursday, March 1, 2012
Day + 1
Today, I am officially one day old, each morning the nurses write on my board the number of day it is, leading up to the transplant were all negative, the transplant was day zero and every day from now on is plus one, two and so on. It reminds me of new moms when they count their babies age by weeks.
I'm still puking up a storm but am slowly learning how to take my medicines early enough to keep some food down. Plus, my new nurse, Jackie, made me a strawberry peanut butter shake which gives me the protein I need, it's pretty good too. The doctors tell me the nausea and fatigue symptoms linger the longest so we just do whatever we can to get good nutrition in me.
I was kind of down this morning because I really thought I would be able to take all my medicines down, I got through 20 pills but then they all came right back up. Thankfully Eric came in and cheered me up, we talked to the nurses and nutritionist about eating lots of smaller meals or shakes and to order off the main hospital menu. It makes me feel better because I was starting to dread meal time.
Eric has left now but I'm so glad he reminded me to get positive again, it really makes a lot of difference. One of my other nurses tells me to talk to my new cells and tell them to make themselves at home, basically send them good vibes. So I've been doing that every chance I can, I don't want my new cells to turn on me and give me graft vs. host disease. I'll take any advice from these nurses most have them have been doing this for a long time so they've seen it all.
On a sad note, I would like to offer my condolences to my step brother Chase and the Downing family, Chase lost his grandfather to Alzheimer's yesterday, it's never easy loosing those you love but at least we know they are in a better place.
That's it for today, I hope this day finds you well and you are able to appreciate all the love in your life. Much love from 9215.
I'm still puking up a storm but am slowly learning how to take my medicines early enough to keep some food down. Plus, my new nurse, Jackie, made me a strawberry peanut butter shake which gives me the protein I need, it's pretty good too. The doctors tell me the nausea and fatigue symptoms linger the longest so we just do whatever we can to get good nutrition in me.
I was kind of down this morning because I really thought I would be able to take all my medicines down, I got through 20 pills but then they all came right back up. Thankfully Eric came in and cheered me up, we talked to the nurses and nutritionist about eating lots of smaller meals or shakes and to order off the main hospital menu. It makes me feel better because I was starting to dread meal time.
Eric has left now but I'm so glad he reminded me to get positive again, it really makes a lot of difference. One of my other nurses tells me to talk to my new cells and tell them to make themselves at home, basically send them good vibes. So I've been doing that every chance I can, I don't want my new cells to turn on me and give me graft vs. host disease. I'll take any advice from these nurses most have them have been doing this for a long time so they've seen it all.
On a sad note, I would like to offer my condolences to my step brother Chase and the Downing family, Chase lost his grandfather to Alzheimer's yesterday, it's never easy loosing those you love but at least we know they are in a better place.
That's it for today, I hope this day finds you well and you are able to appreciate all the love in your life. Much love from 9215.
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