Just got back to my room following my Fludarabine. Another uneventful day, I will spend the rest of the day reading and enjoying the wonderful a/c in my room.
I forgot to mention that I am currently on Septra DS, Levaquin and Allopurinol po. I also received a Zofran ODT today, although nausea doesn't seem to be a problem right now.
Quick and uneventful infusions of Fludarabine as the previous days (Thank goodness) I am to start a loading dose of Rapamune (anti-rejection med) tomorrow, 12 mg (12 tablets) then I will be admitted to the Bone Marrow transplant unit on Sunday. My Mother and I walked around the transplant unit and looked at the many pictures of the previous transplant patients and the early reunion pictures. I am SO looking forward to attending the next reunion in April!!! In fact, I'd be rather happy if I could attend the...hmmm, the next 40 or so reunions to come.
Good Day/Evening to all and thank you for your thoughts and well wishes.
Today was a lacadasical day; lots of fluids dripping in along with Prograf, Zovirax, Zofran (although I think the strength must've been decreased) and some Ativan so I can attack the Rapamune and Pepcid looking at me in their cup. I have to say that even with my previous CVP, Mitoxantrone/Fludarabine, and CHOP had I ever experienced this chronic nausea/queasiness. I so frequently feel the onset of a nasty vomit, but it hasn't happened yet.
I am also feeling 'flu like' symptoms, the achiness, chills and a general malaise. Amongst that, I also had bouts of homesickness; I miss my messy boyfriend who has such a wonderful "make ME happy smile', I miss being ran over by my over eager 70lb GSP and my Sharpei-Labrador miss sweetie. I was speaking to my boyfriend Dan earlier as he described the goings on as home and I had to suppress some tears, several times. I miss the argument of what was for dinner followed by all 4 of us curling up on the couch watching what Discovery, TLC or History Channel has to offer before crawling upstairs and settling into bed for the evening. Oh, I forgot....brushing and flossing! I LOVE the taste of toothpaste and the feel of the dental tape scrapping each tooth. I had to have my parents HIDE and take away my dental products to settle for what's being offered: Biotene and some funny looking foam tooth sponges which don't quite give me the yummy mint experience I love.
I was told that I would have to eat otherwise I'd get nourishment through iv. I tried some cold, greasy overcooked scrambled eggs (blech) but the oatmeal with brown sugar was more tempting. Lunch was flavorless mac'n cheese (what happened to Kraft?!) the dry chicken tenders were not tempting either...but that apple cobble didn't know what hit it! : )
I do believe that the Ativan is working so I should attempt my po meds of Rapamune and Pepcid. I should ask for my Tylenol to take care of this chilly and achy feeling too.
My Sister's collection went well today!!!! She was supposed to give them 5000 (what's, units of stem cells?) but she gave 6000 instead. Ha, for once it pays to have the younger and bigger sister!! I had read that the actually transplant is anticlimactic and then there are the crummy feeling days following. My lower body already feels tired and achy. I feel so emotional (can provera do that?) I crying over NOT having my beloved GSP Geddy Lee sleep on me and what I'd do to wake up with his nose in my face and his paws dancing all over me with his wake-up routine. I feel so sorry for my stressed out Mom and Dad. My usually strong and (shhhh bossy) Mom seems on the verge of crying a lot, she had to pick up a lot of the slack when It comes to appointments since my Dad runs off to smoke yet another cigarette. I truly want to curl up under some warm blankets and just enjoy the warmth and not think- or have anything to think about. I dislike feeling this way. I want more control! I want to feel GOOD!
Thanks for listening
I had previouly typed a day 0 post, but I don't know where it went! Thanks to all for your continued support and prayers.
I am still sore, achy and suffering a lot of nausea, even with a scopalaine patch and Ativan iv. I think it must be the Rapamune because the Fludarabine didn't cause nausea, but perhaps the Prograf of Melphalan are causing it. Anyhow, I threw up my Tylenol so the Levaquin was given to me i.v I also got some acyclovir today.
I tried walking around the BMT clinic but it a really a short, too quick of a walk. Is today, day 0 considered my Birthday?!
I still feel like crap! I am perpetually nauseous, my bones and body aches, I want to eat but when I get food, I feel sick. I have to drag this massive iv tree with me to go to the restroom; Actually, I almost feel like the Borg Queen with so many wires and such attached to her. Even with the Ativan for nausea I have difficulty sleeping. I feel cold and after I put on a sweater and socks, I feel too hot. I want to go home, but I still have 99 days to go.
I forgot to mention that I was also given Cortisone, I think that's part of the anti-rejection cocktail.
The one plus out of getting a mini is that I probably won't have to change rooms to an isolation room.
I want to feel better! A nurse took some blood around 2am, so I am going to inquire what my counts are.
My morning started off really well, I ate a good breakfast, showered and my folks came to visit me. My Mom would call it 'positive Mommy power' that I was feeling really good this morning, because after she left, I started feeling poorly. (btw, I am nearly 40 so how could my Mom call herself Mommy?!?)
I felt a little gas bubble in my throat so I thought a little Dr. Pepper might help me out, but alas, Dr Pepper wound up in my little vomit bucket and I haven't had much luck keeping food down since. My transplant onc says that I might have to go on i.v nutrition which sounds nasty to me, but I am sure it beats upchucking. I ordered veggie soup and an Italian ice so wish me luck in keeping it down.
I didn't get numbers, but my nurse said that my platelets were good, and I could still take a walk around the BMT unit without a mask.
A big thanks again for everyone's continued good wishes for me; I am sure I wouldn't feel as good as I do without the support I am receiving.
Nausea, nausea, nausea,
Anyone venture a guess what I am feeling? That is what I feel perhaps 99% of the time. Nothing new to report other than I will get TPN (?) tonight since I can't keep food down. I've been given Zofran, Ativan, Reglan and a transderm scopalamine patch and nothing seems to work for more than a few hours. I am looking at 4 Rapamune tablets that I am supposed to take, but I just can't make myself open up the blister pack. The sad thing is, that I'll probably feel worse before I feel better and that is a depressing though.
More of the same nausea, now with heartburn and diarrhea. I was taken off Pepcid and put on Mylanta qid and Protonix bid. So far the Mylanta has helped with the heartburn and the onc wants two days sample of my stools for testing. *major blech*, I have to evacuate into little pitchers which I quite find embarrassing.
The past few days I've been able to walk around them BMT unit several times; this morning, after my shower I barely had the energy to gather my stuff and make it back to my room! When my boyfriend came by, I wanted to show him the BMT unit but I was quite winded by the time we got back to my room. The nurses say that my blood counts still look, but I feel horrible still. My problem is that I can't just 'cry' all my frustrations out, I keep getting nauseous before I could get a serious tear out! I also know that there are people out there who are enduring much more than I am. I am just uncomfortable and inconvenienced while others are suffering much more than I could imagine. I just have to say that I can't wait to get past 'thinking only of myself' and into feeling strong and healthy!!!
Ahh, 94 days before I can go home!
My blood counts are steadily declining, along with my energy level. I have been unable to keep any kind of food or drink down, but thank goodness for the TPN otherwise I would be in trouble. I have been lucky that I don't have any mouth sores yet, and I haven't needed any blood either; My onc says I am progressing normally, but I sure feel crappy for being 'normal'. I have had some crazy food cravings especially since I can't even keep my Cream of Wheat down! I am DYING for a Chili Cheese dog with chilly cheese fries!!! I can't wait for my food restrictions to be lifted. Okay, I can't wait for my stomach to tolerate ginger ale!
These past 4 days have been filled with...a little misery and of great elation! Earlier this week, I had been plagued with unending heartburn, nausea and diarrhea, but each passing day, it becomes less and less. I do believe that the BMT unit should censor tv commercials, because I begin to crave almost every food product I see, only thing is, if I think about it too much OR smell someone else's food, I become a bit nauseated. That is an improvement over my previously constant Zofran and Ativan requests. I am now able to eat small, bland portions of food, which caused me doctor to tell me that he may discontinue the 24 hour TPN drip, and reduce it to overnight only! Yesterday, my doctor also told me that my WBC counts are up, (don't ask me the number, I just heard 'up'!) and he said that if I continue to improve as I have, that I may be able to go home sooner than the 89 days on my countdown!
I must've spent a lot of energy being happy and excited about possibly leaving sooner than I thought...because I couldn't sleep last night, and today I am feeling tired, weak and a tad achy, although my blood counts and temperature are good/normal.
I took off my scopalamine patch so I hope that I won't be waking up with that 'cotton in the mouth' feeling...I just hope my nausea doesn't come back!
I am still on Tacrolimus (Prograf iv), Sirolimus (Rapamune oral), Levaquin, Abelset (with Tylenol and Benadryl premeds), Protonix, Provera and Lomotil (as needed). I may ask for something for sleep tonight, because I am usually awake when the pm nurse comes to visit me almost every 2-3 hours. Ah, dinner's here!
yeah! My doctor just came in and told me that my wbc is 300!
Today, I still feel a bit 'touchy and achy', but much better rested than yesterday. My much anticipated chicken noodle soup was horrible; warm, watery tasting with 3 wide noodles and specks of vegetables. That was not what my mind was thing of when I ordered it...earlier there was a Campbell's soup commercial and THAT was how my soup was supposed to look and taste.
Greg, I agree with you on the popcorn thing; there is always the smell when I walk to the other side of the BMT and I have to hustle to get away! In fact, a few nurses ask why I walk to quickly, but I suppose I don't want to be like some others I have seen, shuffling around with someone else dragging the i.v tree, AND I can make a quick escape if someone orders Meatloaf and gravy!!!
Ooh the Melphalan has started on my hair, lucky for me it never got too long after the CHOP, but it is still not a pretty site to see on my pillow.
This has not been a very good weekend for me; I had been feeling lethargic and achy and a little sore popped up on my lip. I think it might've chewed my lip when it was really dry from the Benadryl and Scopalamine patch.
This morning, I slept in and had no ambition of taking a shower or going for a walk. I had a headache, a bit of a temperature and a full out throat ache which includes my ears.
My doctor said that my counts are still rising, up to 500, but still low enough to get an infection. Since the nurses don't want to give me Tylenol that might mask anything, I am eating nothing but popcicles to help with my throat. I was told if my temperature rises, I will have blood cultures and a couple of antibiotics. After feeling so good on Friday this is kinda depressing. I just hope it isn't anything too serious.
I'd like to start off by thanking everyone who has shown me support with postings, cards, positive thoughts and prayers; everyone (I think) has made a difference in my life and I will be forever grateful.
Yesterday wasn't a good day for me, with my temperature threatening to spike, my continued nausea, vomiting, diarrhea and my sore throat. That all culminated with my temperature 'spiking' at 101.2 early this morning. To say that I felt miserable is an understatement! I had blood cultures done to each lumen and someone came and got some blood from my arm. I am now on antibiotics Ancef and Fortaz in addition to viscous Lidocaine and "magic mouthwash", a mixture of Mylanta, Benadryl and Xylocaine/lidocaine.
Now, I am telling myself that this is it! From here on out, I am going to not only get better, but I want to FEEL better!
My obsession with forbidden foods has not abated; I remembered something really yummy I had a long time ago and I looked up the recipe for "Frito Pie". Although the one I had had BBQ Brisket, the online recipes call for a can or chili. There was even a recipe for a Frito, peanut butter and chocolate confection which sounded interesting! Oh, I also wanted to thank everyone who expressed these same types of food cravings while going through this procedure; I am glad to hear I was not unique with these desires. Actually, I am starving, but I am so scared to even order food for fear of the vomiting and cramping. I must admit, this SUCKS and for a 'foodie' this is most inconvenient!
After being awakened from an intoxicating 'nightcap' of Ativan and Benadryl with a touch of Morphine, I was slightly groggy and not to prepared for the news that my white counts are continuing to rise and I had no temperature!
My lip sore and my throat were not fairing well as I tried to get a shot of lidocaine/magic mouthwash to work before being wheeled downstairs for a chest x-ray. As soon as I was returned to BMT, I was ushered to my shower (most likely for housekeeping to make my bed- without me in it, and everything else they do.)
My doctor later came in saying "Yeah!" no temperature and my counts are just shooting up. He said that my mouth complaints are usual and a sign that my body is beginning to take care of this. ??? Well, a happy doctor makes a happy patient. My folks stopped by with the "good" bottled water (sorry, I don't like Arrowhead) a much coveted face cream and clean pajamas. I felt loved, I felt good. I was feeling good and BRAVE enough to order a....burrito for lunch! With that white rice, blah beans and meager cheese burrito, my day slid into mediocrity. If I were a Laker Fan, I supposed the new about Kobe might've lifted my spirits; instead I ordered a....cheese pizza and WHHHOOOO, here comes the Ativan. My single minded desire to EAT REAL FOOD has rewarded me with nausea and feeling worn-down.
Ah! a card! The sign of a better evening to come? : )
Yeah! I got to go OUTSIDE today for the first time in 19 days! My parents and I went to the Japanese Garden next to the BMT unit. I was winded by the time we walked through the gates, but man, was it GLORIOUS to be outside! I sat on a bench to catch my breath and I took in every sight I had missed for almost 3 weeks. I watched a lizard sun himself, the turtles and carp 'fighting' for the food pellets my father threw in for them, and a busy line of ants going...where ever ants go. I had to slather sunscreen on my exposed areas, wear a hat (which I haven't done in 3 weeks) and even though it is pretty warm outside, I had to wear something with long sleeves.
Well, before that, my doctor came in with a great big smile and told me that I am doing 'very well', my wbc keeps getting higher, he was taking me off of all my antibiotics, and I should go outside for a walk. My only 'negative' was that I am not eating. I don't know, I wonder if I a psychologically wounded from my marathon vomiting session this past week, am I now afraid to eat? I looked at my tongue and it looks kinda smooth, the usual bumpiness isn't there! Did I swish them all away with too much Biotine? Did the transplant blast them away? Did all the stomach acids fizzle them away? Is that way nothing tastes good? Is the hospital food 'that' bad????
Another gripe of mine is after making an couple of inquiries, I find out that my state disability papers are being mailed TODAY! I dropped them off a week before my Hickman was put in and that was a month ago! Not that I am going to go mall hopping, but now that I am feeling better, Amazon has been beckoning me with 'their shiny wares'.
I should now probably make a few circuits through BMT and then find something to eat.
My doctor says that I am continuing to get better, in fact he canceled my nightly Abelcet and now I am on oral Sporanox; soon, I'll be off the iv Tacrolimus and on to the oral tabs. The bestest news is that I may be able to go home soon, either later this week or next...and NOT the on campus Village, but HOME (parents)!!! I can't wait to sleep on a firm mattress and not have anyone come in through the night checking my bp, temp, urine output, weight, nor taking blood. I will still have to make bi-weekly treks here, but, what a small price to pay to go back to the house I grew up in? : )
I do have one problem remaining: because of the almost constant nausea and vomiting these past couple of weeks, I think I am having a 'food anxiety' now. I only feel nausea now when I have food in front of me; it doesn't matter what it is, even Cream of Wheat does it to me. I had been getting Ativan with almost any attempt at eating for a while now and I am almost afraid to attempt a meal without it! : (
Aye, it's always somethin, eh? I know, if this is all I have to worry 'bout, I should quite my bellyaching and buck up.
Life IS great and so is everyone on this list!
I will be going home TOMORROW!
The doctor says that I have done really well and I suppose going home is confirmation of that.
I've already been visited by the dietician and a discharge case manager giving me the basics of going home with more information to come tomorrow. I suppose the low bac diet should be simple enough since I won't be able to grab my purse and drive down to the closest fast food joint.
Thanks to all who had sent me cards, emails and posts of good wishes and prayers!
Boy, I am not even out yet, and a nurse came in to take apart my i.v tree then housekeeping came in to take a chair/sleeper out for a new patient's mother. LOL I got a little office seat to replace it. But, since everyone here is so nice, I was given a new forest green City of Hope BMT ribbon pin AND a really nice COH BMT anniversary book.
I have to say, for a not too pleasant procedure to experince, I am so impressed with the wonderful people that work here, from doctors, housekeeping, PCA's, RN's, to the guy who schlepped me along in a wheelchair for chest x-ray's. To counter that, I am not very impressed with the culinary fare I've been provided. ; )
I am now at my parents home, resting comfortably. I am so in love with my high count Ralph Lauren sheets ("birthday" present) AND a firm mattress! I also love that when I wake up at night, it is because I woke up on my own. My parents have a barky dog, and live close to a fire station AND a railroad track, but it is still more peaceful here than where I was.
I have encountered only one real problem since leaving City of Hope, and that is the modem in my laptop suddenly stopped working! I thought it might've been the old phone lines in this 40 year old house, but after checking out some things, I discovered my problem and my darn CDs are at my home in Orange County. My boyfriend told me it might be a modem burnout which is really a bad thing for me. My parents have an older computer with a very slow (but working) modem so here I am. I do have to compete with my Mom and Dad who are throwing me 'looks' probably hoping I'll take the hint! LOL
I am eating better, drinking plenty and taking my temperature more frequently than told to. Everything here smells like bleach; my Mom is obsessed that I am NOT going to get an infection while under her
care. : )