nausea and back pain

The night after my chemo, when I took the nasty oral dose at home instead of the IV dose, I was so nauseated I barely slept and remained so until  10:00 am when I got more chemo and got and IV zofran instead of an oral.  I told mom I wanted some kind of pastry sweet for breakfast and so she made me and poppy seed almond cake.

I did good all day until the evening my back started hurting because my body started producing heavy replacements and took 2 tylenol before I went to bed.  I woke up at 2:00 am this morning and had to take 1 ondesetron (loritab) instead my back hurt so bad, then went back to bed and slept really well.  I feel okay this morning so far, but woke up and realized my head was itchy and my pillow looked like the cat had slept on it.  So, I called Amber and she'll be around tonight to give me a buzz.

counts:
N/A (see yesterdays -chemo +body rebuild = my guesstimate)

Day One Aftermath

I didn't sleep well, I either was super nauseated or had to pee, and when I went pee I could smell the Mensa and coffee and got nauseated again, would lay down to sleep for twenty minutes to an hour then have to do it all over again.  I finally went to sleep after listening to Phantom of the Opera for the first half hour for five hours.  I feel like what I imagine a hang  over feels like.  I will never agree to taking the Mensa orally instead of through the IV again that was disgusting and haunted me all night.  Sleeping was already hard enough considering I've had tachycardia (a faster that normal heart rate) the last couple of weeks.

Long Day of Chemo

Wow, talk about a long day at the hospital, my appointment was at 8:00am and I ended up being there until 6pm, they wanted to keep me until 8:30pm so I could take this last chemo through my IV but decided to send me home with the oral version.  Which was a liquid that tasted suspiciously like a permanent smells.  I nearly threw up after trying to quickly consume the first half in one gulp, then after being horrified at the thought of drinking the other half, mixed it with dark coffee and two hot chocolate packets and nausea meds.

My LP went pretty well other than he went right through a tight muscle I had going on which is NOT pleasant, though there's no way of noticing that.  Chemo every day now with extra chemo and the LP once a week for a month, then we'll see where I'm at.

Thank you for your prayers, and since god is a smart alek, my neutrophils were exactly .7. ;)  My platelets took a huge jump so the doctor figured we were pretty safe to go ahead.

counts:
WBC= 2.6
HCT= 31
PLT= 200

Just Hanging Out

I've just been hanging out, watching Vampire Diaries, playing animal crossing (on the DS since my wii is broken) and working on my project, which is ALMOST done.  Nothing really new to report, I go in for chemo tomorrow.  Jake's switching jobs, he gets a dollar less pay but we qualify for food stamps.

Counts
N/A (will update those tomorrow)

A few days update

Okay, so the rash is foliculitis from having a low immune system, and I still have it.  Lisa and Jim brought me some oatmeal bath, which made the first set at least start to come to a head, I think I'll try some again tomorrow.

I have been working on a special project and going to school, and the classes require a bit more concentration than the last ones.  I'm taking marketing right now.

Yesterday I went to get chemo and still don't have quite enough neutrafils to start consolidation again, so everyone pray I have enough next time, otherwise they'll have to go back and start me on induction phase II instead, and put everything off another month.

Winter tried to fake a cold while we were in there, and then cried when I had grandma take her into another part of the ward to make sure.  We think she was trying to be sick like mommy.

counts as of 9/26
WBC= 1.7
HCT= 27.8
PLT= 100

False Alarm

I woke up at midnight last night with a rash on my back and panicked that it was shingles, and told mom and baby to evacuate and called the doc.  I had had a headache and a little bit of a sore throat, and called my doctors to make an appointment.  I woke up Jake and had him drive me down to LDS, they checked me over, and fortunately decided that I didn't have shingles, and said that Winter should be fine since she had already got the chicken pox vaccine.

They determined that its a type of rash accompanied with swelling that is a possible side effect of prednesone.  Why am I not more surprised?

Anyway, they prescribed me some anti-itch stuff and we got most of my meds refilled while we were down there and I had a little longer than usual to chat with my husband.  It was actually good that we sent mom and Winter away, since mom's car had a flat tire and we drove a whole lot further than they did.  Mom's story turned out well as well though because she was able to call triple A and get a free repair at Discount Tires.  Yay!

Winter is not happy that I won't kiss her up because I don't want to give her a sore throat and she's being really needy tonight.


Counts
N/A

Double Day Update

I did not get any chemo.  After heading down to the hospital and finding out I'm supposed to get an LP every time this round as well, also was told they weren't giving me any chemo because my ANC is critical again (in other words, I have no existing immune system).  I've been off the steroids, but still in pain from them and taking pain meds to sleep and walking like a pirate the rest of the day (it is national talk like a pirate day after all).  If I don't see improvement tomorrow I'm going to call and discuss it with the triage  nurse.

I went to the gyno today and got my clean bill of health  and Winter got her booster shot and mom got her flu shot, hopefully it protects her.  Winter and Jake apparently still need theirs, the flu shot wasn't mentioned to Jake for Winter, so he assumed she didn't need it, and he just hasn't got his yet.

I'm working on a couple of projects and waiting for my next class to start, and everything else is good.  Heather made zuppa toscana tonight and her zuppa is pretty awesome. :)

A Full Nights Rest

So yesterday Jake, Winter, and I drove down to the hospital to get a prescription for different pain pills in case I needed them in the middle of the night, then back to the wal-greens to fill it.  Winter has been constipated and in pain on and off all day, and so I grabbed a box of enema laxative while we were there.  After I picked up my prescription she told the pharmacist about how her bum hurt, and he helped me tell her it would be okay after she took the medicine mommy picked out.

Of course the laxative scared her and her bum and tummy was still hurting so she was refusing to try and poop, but maybe twenty minutes later she sat on the potty and would not get up until she "pee'd".  It took about four minutes before she yelled,  "I pooped!"  We all cheered and she is now a much happier camper and grandma had bought her a 6-12 hour laxative that tastes like root beer and we snuck a little bit in her chocolate milk last night as well.

Mom on the other hand didn't even need to use her prescription last night, yay!  Thus far is still doing well, and will be going to the dentist this afternoon for a cleaning and exam so she can go to the dentist again and get drilled and filled and have her dental bar removed.  This will be a fun out-of-pocket expense since medicade only covers pregnant women when it comes to dental.  Hopefully I don't need too much work.

counts
N/A

Another Night of Prednesone Pain

Still had a hard time last night dealing with my pain, even though I am tapering slowly.  I took two oxycodone and it didn't help like it did the night before and I ended up taking a lorazapan, drinking two cups of coffee (for the caffeine) and eating a bowl of ice cream (for the endorphins) in order to take enough of an edge off to finally go to sleep.  Amber and Adrianna were awesome at distracting me while I  played sims and chatted with them on facebook.

I feel fine this afternoon, but since the oxycodone didn't cover it this time, I'm going to go over to the hospital a little later to pick up a prescription for something else just in case since I'm on a time frame and think I'm doing a much better taper to get off the stuff.

Anyway, otherwise its been a good day, and thanks to Winter being over at her friend Kai's and Jake sleeping  through the lunch hour, mom and I had an awesome lunch of baked salmon, toast with melted cheese and fresh tomatoes and baked yam.  YUMMY.

Counts
N/A

A couple of pokes, PTSD, and pain management

Okay, so I figured everything would run pretty smoothly and sent mom and Winter off to the fair while I spent the day at the hospital.  Mom says they had a great time (which I suspected they would-because Winter has always loved the fair).  Winter even rode the the ride that takes you up in the air and drops you up and down by herself!  Mom hates that one!

Anyway, right when I got in i had my blood run then sat in the room for about thirty minutes reading before the doctor came in to see me.  It was Dr. Biss, who I had once before, and made himself seem like a total dope by being unprepared by not having my chart, or any information on me at all.  I just thought he was that new and that he was having an off day or something and shrugged it off, but while I'm laying there waiting for him to do a bone marrow test he says, "So you're done with your prednesone?"  I'm like, "No, you haven't given me a taper."

Then he proceeds to tell  me how there's no taper listed on his chart and that I could just quit.  Well, I didn't realize how upset the whole experience had made me and totally started to wig out and tell him that I know I need a taper, that I'd played that game before.  And he says, "Oh, you've had problems coming off it before?"

Now I'm really upset, and cry and am shaking with adrenaline, and tell him, "I'd rather GIVE BIRTH."  So then he and RN are trying to calm me down, and my mind is now stuck on the memory of screaming in pain every four hours for three or four days because they can't figure out that they cold turkeyed me off of prednesone the first time and I bawl all the way through my bone marrow test, making the RN doing the procedure nervous, and John the other RN had to come in and watch to make sure they weren't torturing me.  And Megan (the RN doing the procedure) had to promise me she'd talk to Dr. Hodis to get me a prednesone taper.

Anyway, I had to go straight down to get my lumbar puncture (spinal tap, for those who don't know, where they inject chemo into my spine) so when I went down there (I had stopped crying finally) and they took my vitals the nurse had to look at me funny and ask, "Is your heart rate normally 104?"  I then explained the situation to her, how Dr. Biss had scared me and she asked if I thought I could take a breather and calm down and she'd even double check.  I said yes, because I liked everyone in radiology and would probably be fine in a few minutes.  And I was.

The LP went fine, I was already numb still from the last lidocaine shots, so it was probably the easiest one I've ever had.  I finally got into the recovery room, and had a very shaky lunch at about four thirty, and was grateful I cheated and ate a few hours before my LP or I'd have probably still been wigging out.  Megan had sent down a prescription with a taper instruction sheet while I was getting my LP.

When I got home I ate again and took a quick nap, got up and colored with Winter, then went to bed early, exhausted after taking the dose of pills on the taper they gave me and told my husband to make sure I didn't have a fever and that I was breathing when he got home and my mom to check before she went to bed.  It all went well until midnight when I discovered that the taper they had planned for me was too steep and I ended up with my right knee feeling like my knee cap was shot off and having to call the triage nurse to ask if I should take another 10mg of steroid to taper off more slowly.  She said she didn't know what it was and didn't have the charts and to take two loritabs instead until she could straighten it out with the doctor.  So I did and paced and cussed and colored in Winter's coloring book for a half hour while the pills took effect and went back to bed.

I didn't get a call, but I took some prednesone this morning, and the next drop is equally as big, and I haven't heard from the doctors office, so I'm probably going to have to call and ask about adjusting a bit again.  And they were going to no taper!

Anyway, I feel okay right now, and will be getting my dressing changed today, and actually feel like I've grieved for the first painful experience now and will be a very FIRM self advocate today about my own medications.

counts
WBC=1.8
HCT=29
PLT=86

Writing this one late-includes info about tommorow

I'm writing this blog later than normal, I've had a good day, and of course I have straightened out my bowels finally so that when I get chemo tomorrow I'll go back to being constipated.  :)  Isn't that how it goes.

I have my chemo, plus an LP and a bone marrow test again to double check that I'm slipping into remission and ready to start consolidation on the 18th for sure as well as double checking my match with my three possible donors.  It will likely be a long day in the hospital, since I have my appointment at 11, and LP at 2:30, and I'm not supposed to eat anything eight hours before my LP, so I'm sure I'll be nice an pleasant with the radiologists until they dope me up. I'm guessing everything will be wrapped up at about 5 the way things usually get drug out.

Anywho, dad leaves tomorrow morning and Winter is upset about that and having to sleep in her own bed, she was worried about the lights shaking too.  I think its a power surge that happens when the air conditioning comes on in this house with old wiring, so I just unplugged all the lights and told her she had to be a big girl and sleep in her own bed.  We'll see if she makes it through the night.

I finished my required work for my classes for the week in case I have a hard time concentrating later, I've really enjoyed this class.  I made some really basic calendars for my mom to use until they start stocking calendars in the stores here in a few weeks- I hope they help.

I just want to let everyone know how much I appreciate all the help and support and prayers that have been given out to my family, and how much each and every one of you mean to us, and this is only the beginning of the road ahead, but I can see a clear path of support and love being built like a bridge for my family, and by my family friends and loved ones that will lead me to a full and healthier life.

counts
N/A-available in next post.

Hangry

Had a good day yesterday, and Winter and I slept throughout the night in our own rooms after I had removed the offending shaking snail light and replaced it with a snowman.

Marcy and Nancy came by, Anne couldn't make it, but they brought me a nice casual pair of pants to wear in the hospital and awesome sugar free chocolate bars that don't taste like aspartame.  :)  They both look really good, and sound like life is going well.

Today I've been hangry almost all day, at first I think it was just sleeping in a bit longer than usual without waking up to eat something, and then having to come up with something myself, then napping past noon when I usually eat a little before noon.  I think I need to request that if anyone else in the family goes out to eat, they need to just say that they're going out to eat and that A-I'm responsible for myself-and B-they aren't going to go have Wendy's because not being able to have a chicken sandwhich french fries is the last thing I want to hear.

Now that I've had lunch and a much more timely snack, I'm feeling better, and I'm just going to have to keep a little better track of my time tomorrow.

I think Lesa might be dropping by a little later, and it sounds like furniture is being moved around between a condo and house, so it'll just be me until dinner.

counts
N/A

IMPORTANT UPDATE-LOTS OF INFO

First, in case anyone does not understand, all of my chemotherapy and bone marrow transplant work will be done on the 8th floor, East wing of LDS hospital, and I will keep you updated on room and location changes as they occur, but the following is my current schedule as well as what we can possibly expect throughout the  process.

Presently, on the 13th I will go in for my final induction treatment, completing the first small steps that have pushed me into remission, which will include chemotherapy, a lumbar puncture containing chemo, and a bone marrow test to double check my results with my potential donors.  On the 17th I will go in and have my teeth   cleaned and examined so that I can have any cavities taken care of and my orthodontic bar removed on another visit I will have before the month is up.  On the 18th I will start the next month long treatment set which will make sure that my luekemia remains dormant.  During this month, things will remain the same as in the induction stage where I will be hospitalized for any problems, or fevers, and will go in for transfusions and be monitored for any other needs that may occur (worse side effects etc).  On the 19th I will go have a thorough gynecological exam to make sure I'm not carrying any diseases that would case worse immunodeficiency than expected.

Once that month is up I will be re-admitted into the hospital for a longer duration, receiving six days of full body irradiation to eradicate any left overs, nausea can be big problem during this time, but otherwise should do well.

I will spend 4-6 weeks in the hospital and receive my transplant.  The first few weeks should hopefully be the easiest, but since I have an unrelated donor, it is likely that I will develop at least a small case of graft versus host disease, which will be a struggle to balance out medications and symptoms caused by medications, which could last a few days to several years depending on how my body adjusts to the transplant.  This is the part I expect will be hardest.

Now, I'm sure there are other questions out there about what could cause what and such, but here's the answers to the questions that I've already been asked and can remember, feel free to ask any others you want to, regardless of any fear of offending me or upsetting me-you won't, and I believe in open communication to healing.

Will I lose your hair?  YES
Will you be able to have any more children? VERY UNLIKELY
When will you be done?  POSSIBLY 2 YEARS TO NORMAL
How will my donor donate?  I WILL USE STEM CELL-THEREFORE BLOOD PLATELET AND WHITE CELLS ARE DRAWN-IN THE CASE OF LARGE VEINS, THE DONOR WILL HAVE TO HAVE A LINE PUT IN AS WELL.
Can I contact my donor?  AFTER ONE OR TWO YEARS IF THE WANT IS MUTUAL.

Counts
N/A

Big Day

The big planning day is here, I really don't know what to expect with a family conference thing, it seems more over the top than it is, but I'm really not sure.

Nancy, Marcy and Anne are coming to visit soon, its been a while since I've seen them and that will be awesome!  Dad rocked breakfast this morning, so I'm feeling pretty good, even though its a bit of a dreary rainy day it looks like, or morning at least.

Winter had a night terror last night and i let her sleep in my bed, even though she didn't have any late T.V.  Darn.  I hope this is just a passing phase, when I get sicker i'll have to send her down to grammy and grandpa.

I don't have much else to say, I might blog twice today instead of waiting until tomorrow, because I know everyone is waiting for the story.

Counts
N/A

Sorry I missed my post yesterday

Sorry I missed my post yesterday, I was too distracted by my mom flying in and Heather finally signing for her house, and finishing the next Dark Tower book that of course ended in a cliff hanger.

The night before Winter got up three times with nightmares or sleepwalking.  I tried to get a hold of Lisa, knowing one of the McBride girls had a lot of sleep trouble too to see if she had something to recommend, but didn't, though Jake told me that he read somewhere video games and tv within the hour before bed made it worse, so last night I made sure we were done with tv and video games for the night at eight and put her to bed at nine, and she didn't wake up upset once.  It seems promising, so we'll see how that works out.

Adrianna and Emily dropped by yesterday evening with a chocolate cupcake with awesome peanut butter frosting.  I had trouble going to sleep because I didn't turn on my fan and didn't realize it until I woke up unable to resist the cupcake any longer.

Anyway, I'm still feeling good, and ready to talk tomorrow about how I'll move forward with the transplant with my family.

Counts
NA

Chemo Drain Day

Winter had a nightmare at three in the morning last night, and I sat in the chair and rocked her in a blanket for an hour while the cat went wild climbing over things and skitting over things until i finally found the energy to chase him downstairs with a pillow and Winter and I moved to my bed where she woke me up every two minutes for the first hour to tell me that she loved me.  Not so bad.  I actually got probably a full ten  hours of sleep, and yet I was still exhausted come ten o'clock.

Dad made a good breakfast, and so I think it was just the first chemo drop this week being a little harder, fortunately I think my counts were high enough to take the beating and seem to be recovering.  I did help Winter with her bath this morning.

I got my dressing change today, I can now see how bad the rash was getting.  The home health guy says that this new patch is the best one one for that, but I might have to call and have him change it mid-week if it starts to come  undone.

Dad stopped by the local outdoor market and bought some fruit and veggies, and Heather signed for her house, the keys to which they'll have on Monday, so Monday should prove an exciting day.  Dad's been having phone problems, its not ringing and apparently he gets the voice message of anyone else.  I told him he might have to swap chips with Winter's phone.  Though hopefully it's the phone and not the chip in the first place.

Counts

N/A

Chemo Day

Chemo day today, getting really tired, so I'll be going to bed shortly.  Winter and dad visited with Anne for a bit downstairs.

I think they forgot to give me a hypo-allergenic patch last time, or they think if its non-latex its hypoallergenic, I don't know, but I have a little bit of an itchy rash, but the nurse should be by tomorrow to change it, and I've requested the hypo allergenic dressing, so hopefully that's what we have.

I had Notoshia come and visit today and show me all her recent art work (which is one of my favorite things to do), and I watched Cats for the first time.  There is some pretty music, but I'm not sure its something I could watch more than once, though I would probably read the book it is based off of.  I really enjoyed having one of my friends to spend time with again today. :)

counts
WBC= 1.8
HCT= 29.7
PLT=94

Visitors

It was a slow day today, I just read maybe half of the Dark Tower II; The Drawing of the Three.  No, not even that, the first third almost, Winter took me for a short walk outside this morning while papa took his shower.  She had to have her twenty minutes of peace time around noon because she couldn't play nice.  I tried to make a diet dr pepper slurpee to see if I drink it.  I wouldn't.  Winter wanted it, but I told her not to spill it three times, and she did three times, then argued with me about how she needed a slurpee after I dumped it.  She screamed bloody murder and woke up her dad, so mom plopped her in bed and let her have it out with herself.

Eileen and Donald came by with Dontae and Eileen had dinner with us, I helped Jake make tatter-tot casserole (sheperd's pie).  It was nice to have some more people to interact with.  Dontae got really tired at the end and would only stop crying when Winter did this wild dance for him all over the living room.  Winter got an airplane at the museum with papa and went to the mall (at least that's what she told me).

Feeling really good today.

Counts
N/A

This update is three days old, for some reason I didn't publish it though.

Night Sweats

I don't know why, it must be common for other people, that the doctors always say that the night sweats are a symptom of leukemia, and once you're on chemo you shouldn't have them anymore.  I think they're crazy, because I don't get them until I start chemo!  The answer of course is that its the medical beds plastic sheets, but my sheets aren't plastic and my face is moist and I wake up wet all the time.

Anyway, I had some strange dreams last night I think having to do with my subconscious trying to prepare me for a transplant, though they were a little fantastical sci-fi, I got the gist.  I slept on and off all night getting up to pee and reflect on the dream I had moments before and why I would dream it.

Winter had a break down last night and I let her stay up and watch princess and the frog in my lap.  She told me that she didn't want me to have a line, and that she didn't like it.  I told her that I was going to be sick for a while, so I would need it for a long time.  This made her cry.  I had her help me "take my medicine" to feel better by letting her push a saline flush in.

She seemed better after that however.

Still having good days. :)  Will have a family conference on my transplant at one thirty in the hospital with probably one of the couple of doctors on the team I haven't met yet, and tomorrow is chemo day.

counts
N/A

The dependability of electronics

Okay, so after taking some extra senna this morning, I'm getting a prescription for it too, because I obviously need more than the minimum dose and the ducolace, and I'm wondering if that is even working anyway.

Having said that, today is a mommy and daddy day since papa gaga has to work-Winter was upset about this at breakfast but seems to be cool about it now, since mom is just swapping video games for her every few minutes.  I tried to get her to take me for a walk earlier but she refused.

Of course after a full week of the internet working, it quit working this morning because dad needed it.  Now its up again because he had to go to Heather's.  I am starting to wonder if its just the hours mid-week in the morning when it goes down, or if it has something to do with when I turn my computer off at night and he turns his on.  I don't know, its an enigma.

Winter slept walked last night, maybe had a night terror, because she was shaking and crying.  She doesn't usually shake and i can usually get her to stop crying pretty quick.  She thought she had peed the bed too, and that tends to upset her, but she hadn't.  Once I put her in a blanket and back to bed, she was happy as can be.

Everything is going well here.

Counts
N/A (good likely)

Feeling Some Stress

So today, I let loose a little stress with dad about how I was worried about mom trying to get the business started and everything else, and that I thought he might be better off going home now, since I figured this would be the healthiest I'd be, but we decided that he'd stay on and that mom would be fine and only had a few more days before she could be here.  Dad and I spent the rest of the morning talking about the different versions of Dark Shadows and how I thought the Vampire Diaries way similar in story line.

Still feeling moody, but I think that's because I had enough energy this morning to feel moody.  Jenni got a great picture of the double rainbow yesterday I couldn't get dad to come and see, although the sky looked a lot more orange from the angle Winter and I saw it at.  Jake said that he could see the whole bright arch and it went right over his work in a big ring.

Maybe I'll get a head start on this week's class and get my initial reading done, I believe it is Excell this week instead of word, and that's my weak spot, though I'd like it to be a strong spot, so getting a little ahead couldn't hurt.  I actually did learn a couple of things about Word 2010 this last week too that I didn't know, or wasn't comfortable using before, so it wasn't so bad.

I don't know if she's e-mailing her privately, but there is a girl who keeps complaining about not being able to come up with 150+ words for a discussion post, I think I'll have Jake look up my files on the other computer from English where the teacher has this great brain-storming writing assignment that would work well for her-if I can't find it, maybe I can replicate it and put it into our document sharing, because this is the only instructor I've had that isn't using document sharing like crazy for stuff like that.

Anyway, I suppose my counts are really good, because I feel pretty stable today, though I had some crackers earlier AND last night and i think the salt is bothering me a bit.  That's what I get.

Counts
N/A

Big Storm Last Night

There was a huge storm here last night, and the lightening was hitting pretty close.  Duchess finally jumped over the baby door between my room and the rest of the house, I think it was that he thought he could protect me from the lightening or something though, because he stayed on the far side of the room and was staring down the flashes like he was going to jump at the window and attack him.  I told him to get out and that I was okay, and he jumped back over.

I finished reading my first dark tower book, The Storm through the Keyhole.  Its pretty good, but it took me a few chapters to get used the Twain-ish accents and Wizard of Oz references.  The storm was fitting back drop.

The neighbor girls came to play outside with Winter, they are having a hard time understanding that I am sick and will be for a long time.  It  must be that age group 7-9. Its hard to understand when the only sick you know last a week or less.

Good day, just a little weak, but not as weak as I felt yesterday.

Counts
N/A

Chemo Update

So yesterday, I didn't get an intra-thecal like I thought I was going to get, they're saving it up for extra torture time on the 16th to go along with my next bone marrow biopsy.  I did get my vincristine and donarubason as well as have a discussion about my medications, and told the P.A. that I would tell someone if I took a tylenol.  I got a calling tree or questions and emergencies and Tony made sure I had a sandwich.

So then I talked with Dr. Asch who updated  me with the correct information on timing, so my next chemo (and it will be just regular is the sixth) and then the bone marrow test and LP are scheduled for the 16th.  Sometime around the 6th my case worker will schedule time for everyone to sit down and talk about the transplant.  Dr. Asch's main concern was that I was taking everything too well, and that I was maybe masking my distress.  I told her know, that I understand what I'm facing and that I would worry about one thing at a time, one day at a time, and right now it was finding a way to poop after all the stuff she was giving me and figuring out how to control my blood sugar now that I had starved myself.

Well, the blood sugar thing, I slept that off when we got home after eating a left over enchilada and corn chips after the sandwich and baked lays Tony brought me in the hospital, and we had a late dinner.

I had a hard time sleeping, it has just been too hot in our room since I've gotten back, especially with the night sweats (yes, I checked my temperature) and this room was significantly hotter I think because Jake put the cover back on the water controls in the small bathroom, so the hot air is no longer escaping to the basement, and I've had the door closed to keep the cat out.   So in the middle of the night, when Jake got home he dug out the baby gate and set it up, and sure enough, Duchess won't jump over it, he does guard it though.  I slept the rest of the night much better.

I felt a little nauseated this morning, but I took an ondesetron and feel better.

Counts
WBC= 1.7
HCT= 29.9
PLTS= 78

Going in for Treatment

Okay, so today I'm going in for treatment and while I'm in getting an intra-thecal (medicine in my spine) and I think an IV or two, and fasting/resting, (stupid steroids, I'm hungry already and probably won't be able to eat until noon) I'll be living vicariously through Winter, Heather, and Dad who are going to the zoo to have an adventure.  We'll see which party is more envious of the other when the day is done  (Papa and Heather might be ready for their naps when I'm done with mine).

Lesa came and visited and brought an inspirational butterfly poster over-love it, just gotta get it to quit rolling up and falling down.  Gonna try some more glue dots or something.

I think dad got a lot of work done yesterday (at least I hope so) and Winter had a great day, and went to bed early so that time to go to the zoo would happen sooner. :)

I had Jake cook and chop yesterday, and he did a great job for his first real chop and cook chicken and veggies-I'm super proud, and we made chicken enchiladas,  which were awesome!

I took two different kinds of laxatives last night in hopes it will prevent me from getting backed up again, the chemo starts me off rough every time. >:(

Counts
(N/A)

The Three W's

First W today, is to let you all know I'm doing wonderful this Wednesday.  Jake and dad spent all last night putting up a swing-set for Winter while she hit the end of her happy sleep cycle and wigged-out and had a few tantrums on me.  (You've guessed it-the second W is for Winter)  Heather called about the same time I was talking to her and we both explained how she had to teach papa how to be a big boy and show him how to sleep in his bed by himself.  I also had a talk with papa about it, and told him  how I put her to bed and when that usually was, and her indicators of rest.  And that sometimes she does need a nap, and to let her cry it out if she doesn't sleep and you can tell she's tired.  You know-those mommy things.

So, I put her to bed last night with a little struggle at first, but then she was excited and giggling with all her babies in bed with her, and slept until six when she slept so hard she peed the bed a little, so mom took her to the bathroom, tossed the only blanket she apparently peed on aside and gave her another blanket that her mom usually uses, which let her sleep until just now actually at almost nine.

The last W is the water heater, dad had it repaired, and the guy (Barlow Heating and Air)  did a great job replacing it only took a couple of hours and he did a great job and updated the system for newer standards.  Looks great, and works great.

Counts
N/A

The Non-Chemo Related Troubles

Yesterday I straightened out all my login problems with school and finished a discussion post, but then the router started acting up again, which it has been doing since I got home like crazy, so I didn't post, then went up long enough for Winter to throw a tantrum about netflix then went down again and I wasn't able to post.  Again, having problems this morning and Jake has been looking at it, but it just seems to go on and off randomly. : /

Today's adventure is the end of the water heater.  Last night Jake took a cold shower, and when he and dad went down stairs, discovered a puddle by the drain and the pilot light out, so while Jake was at work he picked up a long lighter and dad started the pilot light, though the ground around the water heater was underneath a puddle.

We got Winter and I a bath and dad went to the library to use the internet for work and to call Barlow's.  We're now waiting for the water heater guy to show up so we can get an estimate and figure out the best way to take care of the situation.

As far as how I'm feeling, I'm doing okay still, and had to tell the neighbor girls to stay away because I was too sick to have them coming in (especially the one, since she seems to always be covered in whatever she ate last).  Plus, she thinks its okay to just open the door and let herself in when its not locked.  I had Jake bounce them out though since he was up.

I'll update further tonight if the internet stays up or goes back up again, we'll see....

counts
N/A - but must be good on the blood side at least.

Rocking this Treatment

I sent Winter and Papa Gaga to the water pad up off of Riverdale road this morning for a play date, since Winter would not get out of the tub and get dressed.  I've never heard her throw a fit about getting dressed before!

I've been pretty good, no fevers yet unless you count the little one degree ones, and I was going to have Amber come shave my head, but it really is upsetting my dad, which I think is strange, because I thought it would upset my mom worse.  Its kind of silly to me, since I see it as a way to keep my temperature down, and gives me a feeling like I'm prepared to fight, but all they seem to relate it to is sickness.  I know Amber probably feels the same way, and I think in a way she's been putting it off all weekend for the same reason, so today I told her she could come by to give me a pixie cut tomorrow, but that I was calling her when it started to itch.  Winter will have her hair trimmed so its not in her eyes, too, because she keeps having to fight hers too.

I did my IV thing myself today while Papa Gaga and Winter had their crazy fun time at the park and McDonalds.  :)

Tomorrow morning the carpet cleaners come too, then I'll feel okay about doing my stretches on my carpet, YAY! :)

Watched the Hunger Games-eh. B-

Oh, and also have decided after waking myself up with a dream that I was a werewolf and nearly falling off the bed, that I have been reading too much monster/wolf fantasy.  :)

Counts
(N/A)

First Full Day Back Home

Pretty tired, Winter hasn't let anyone rest for to long, but I'm happy to hear her little voice and listen to her playing with Papa Gaga.  Had a rough start with only a few groceries I could eat this morning, but doing better now.  Dad made steaks for dinner, which was awesome, even if I can't eat it medium rare. :)  I did Winter's steak dance (well, a small encore of her break-dancing bust-out from earlier).

Amber will be around tomorrow I think to cut off my hair, and with all the night sweats I'm getting now, it won't be so bad, especially because I don't have an electric shaver and I'm starting to feel a bit monkey-ish.  I like to get it before it starts itching so I can just rub what's left off my head in the middle of the night and go back to sleep.

My line supplies and medication came in today as well as a nurse to show me how to work the machine, then my regular nurse will be Erik, who had some time off and will come change my patch once a week, and answer any questions or calls I make to home care.

Went to bed early last night, and might have to do the same tonight, we'll see how much I can get out of that steak.  :)

counts
<N/A>

Heading Home

Heading home today.  Yay!  Need to keep in mind for my next LP though to make sure I get extra water.  I was having a hard time with my blood pressure last night.

I've been sorting through my stuff, and had the CNA donate the rest of the Dr. P to the floor fridge.

I'm thinking they'll probably release me at about four-ish, so that I'm sure to get today's IV medicine covered.  Intermountain home will be by tomorrow to train us on how to do that and will be dropping by whenever we need line care.

I can't wait to see Winty today, since I didn't see her yesterday at all and be back in a more familiar (maybe-LOL) setting.

I've noticed my hair thinning a little bit on my head, but otherwise everything else is mostly intact, and probably won't get the itchy symptoms or the hair loss here for a few days or the nausea from the vincristine, so I have time to be preemptive tomorrow.  I'll be glad to get rid of this crappy crooked table I have to use for everything. :)

Counts:
WBC=1.6
HCT= 30.2
PLT= 79

Big Chemo Day 2

Had a good night last night other than some back pain from suddenly making a lot of cells and a muscle cramp I'm guessing, a tylenol took care of it just fine, and some early rest.

Last night, about 3:00 I woke up and took a walk and realized I was hungry so I went and had a yogurt.  They drew my blood at about 4:00 and I rested until this morning.  They told me they were worried my blood sugar was a little low, and I said that I wasn't concerned since I could tell I when I was hungry and went a have a yogurt, but let them poke me anyway.  (It was 64 - glucometer now read 85)  So I hope I can get in and get my LP early on so that I can eat something and not mess up my schedule I've got down.

Dad is on his way up by himself, so it wouldn't surprise me if he practically met me on my way home.  I'm praying that he gets here safe.

I also should be getting a dressing change today, and we'll see if this one is less itchy.  I hope less and not more.

Counts:
WBC = 1.9
HCT = 29
PLT = 81

Germaphobia

Okay, I think I have over-emphasized cleaning up after my cat, because its not just him but the crumbs from Winter's food and stuff that hasn't been vaccuumed in a while.  I would also like to say that with my first bout when I got home I slept with my cat almost every night, so I'm not worried about that so much.

 Also, the last time I was getting sick it was because I was already so sick and getting fevers and such, and they were cleaning my red and swollen line wound everyday, opening it up to germs, and leaving the ends open and vulnerable, also, all I had was a surgical mask to protect me, not a filtered 3M one like I have now.

I ALSO didn't get from anything around me because my family is amazing and super clean, and good to me.  I got sick from bacteria that is totally normal to be in your own body, with the thrush, the normal germs in my mouth and with my stomach and totally normal bacteria that helps break up food.  The point is, even after all the clean up, and the evasive stuff, I want to return home to a clean environment, but I'm not negating the things that bring me joy when I'm sick, because otherwise, I might as well live in a bubble.

I will have a low immune system for an indeterminable amount of time, until I've had a transplant.  I can spend it in a hospital by myself all day walking three miles, or I can go home and come back when I need to and be happier to spend the time with who and what I love.

I love you all, and I have 50 people trying to do whatever they can do to  help all the time, who are already watching my daughter, bringing food, making sure I have all the things I need to be comfortable, and I will keep everyone updated with what they can do to keep helping.  I also have been personally applying for grants, medical deferments and assistance with bills, and cannot see a time in the near future where I think I'm going to lose my home.  So whoever is spreading that crap around, needs to realize that I'm doing well, that I'm 29 years old, and I am open handed and will accept gifts easily and find them, because I've always been willing to give them and I believe that everyone has a right to feel good about giving and sharing burdens, and not to feel outcast from the group because someone else feels like they want to do everything or that what they are giving is the wrong thing.  So be nice to each other and let each other have opportunities.

Jake and Winter brought me clean jammies and a new toothbrush yesterday as well as a gallon of tea, which I have already drank, much to my CNA's dismay.  ;)  That's what they get for wanting to measure pee.  I also had Heather come by this morning and visit.

I had to check again with the nurse to see if I was getting stool softener since it was becoming obvious my bowel movements were still weird, and guess what, they were.  So I had that removed and called up for yogurt to snack on.

Things are still looking good, and I'm being a good girl and eating nice and taking a lot of walks since no one is around most the time.

I love and appreciate all that you guys are doing for me here, you're each terrific in your own way, and each very talented and diverse enough that I'm blessed to have you all as friends and family.

Counts
WBC= 2.0
HCT = 28.6
PLT = 70

Just a couple updates

Still doing well today, had a fun nurse last night named Karen, apparently she's a book hoarder. :)  She reminds me of Hammer from Fable II.

I was able to get detached from Agnes my I.V. drip, since I am drinking enough water on my own, and I don't have to have my blood sugar tested as long as I'm watching what I'm eating.

Lesa came to visit, and brought some books we were talking about earlier.

I met a nice girl named Caroline and her mother while walking the hall.  She gets her transplant tomorrow and is able to use her own marrow, so was pretty excited to move on. :)

I did a small wishlist on wal-mart.com that people can use if they don't know what they can do to help and feel compelled to do so, its hard registering for things on-line though because not everything shows up, and i can't browse the same way, but I won't be going to the store anytime soon with the crazies that try on all the make-up and leave it for someone else to buy. :)

I had to call room service back today since I still hadn't got the breakfast I ordered by ten, and found out that they had forgot to print my ticket, so I had more of a brunch.

Dr. Prystas came to visit me and see how I was doing and ask if they were planning on a transplant, and told me she was on the donate list.  :)  Asked how I was doing after the 48 hour overhaul.  I also had my social worker come in and give me some grant offers she had found that I could try for and some instructions for applying for disability.

Otherwise, it will probably be a slow boring day.

Counts:
WBC=1.6
HCT=28.6
PLT=74

A Personal Reconfirmation

Yesterday was an emotional hiccup, over something that should have been a good thing, I just wasn't seeing the forest through the trees.

Dr. Pedersen told me  yesterday that they were thinking about making me an outpatient, and the first thoughts that went through my mind were of all the horrible things that happened to me the last time, then I got to thinking that 90% of all those horrible things happened in the first two weeks, and was starting to feel better until I started talking to everyone else.

The worries and misgivings of my close family has made them anxious and overprotective, which I can understand, but did not help with my own emotional stability, so I had a breakdown, ate a candy bar, and gladly accepted an insulin shot.  Once I really started to think about last time, and what helped me pull through when it got too hard to go on, and reminded myself that I'm 29 years old, and I make my own decisions either way, based on my own feelings and not those of other people, I'm ready to move on.

I don't expect a lot of visitors today if any and so will probably have to do fifty laps around the nurse's station   instead of the usual twenty.  :) My pajamas need washing though so I'll be sporting the scrubs, which is okay, but the top goes too high and isn't stretchy enough for a line, so it all has to come out my armpit. :p  Lets just face it, the gowns were made for surgery and pokes, not for central lines.

Thank you all for responding to my needs if I am still able to return home, and helping out my little family.  A special thanks to Heather, who has been an excellent mommy #2 while I'm away, and an awesome support.

Counts
WBC=1.5
HCT=27.6
PLT= 69

Saturday

Yesterday was a good day, I had a lot of visitors, Wes, Ashley, Alayna, and Vanessa stopped by and brought some posters for my room and some unsweetened tea. Yay!  Alayna was confused and upset outside my door having a fit.  I put figured I couldn't scare her worse by stepping outside in my hazmat suit if she could hear my voice.  She calmed down when I walked them down to get a treat at the fridge down the hall and the nurse brought he a Popsicle her and I split, and all was good until they went to leave and she was upset that they had to close me back in my room. :(  She kept me entertained with all the sound effects she makes for things now.  It was hillarious!  Love those guys.

I got to be unplugged for a while, and read some and walked around without Agnes (my IV pole) for awhile, which was  nice.

I had Adrianna, Kade, Emily, Rich, Eileen and Donald visit later, talk about a full house, but those guys are always fun.  Emily and rich brought me diet Dr. Pepper and some more books.  Its going to take me through my transplant to read all these! :)  Eileen brought my first card and I had her put it up on my wall, and start that, plus some change for the vending machine in the hall, which last night I used to get myself a butterfinger crunch (haven't seen one of those for a while) which I love.

So overall a good day, no real complaints, other than that prednesone blow fish sort of feeling and diabetic fingers. :)

Counts
WBC=1.6
HCT=27.4
PLT=63

(Yes, the exact same) :)

The Sugary Puffer Fish

Yesterday, Winter and I trick or treated the nurses station, and got her a super-power germ fighting mask like mommies, some pizza combos, and an m&m bag from Tony who giggled about how cute she was the whole time.  I'm not sure if Tony remembered me, but I once tried to give him and my mom a heart attack by having richters on  his shift.

I haven't mentioned my love for prednesone yet, so here it is.  Dear Prednesone, you make me sick, you're like slime between my toes...oh, sorry, you know the rest.

Anyway, yesterday I started feeling myself puff up from prednesone and was confused since A) This didn't happen in the hospital last time, and B) I'd been avoiding salt.  Then I realized, as I lay there feeling like an over-ripe gourd, that last time I wasn't CONSTANTLY getting water from a drip, and getting flushed with SALINE.  Oh well on that part.  We're just a school of puffer fish up here on 8th.

One thing I didn't know about prednesone the first go round was that it causes blood sugar problems, so I probably spent those two years as a ballooning diabetic, since I remember drinking lots of Coke.  My youth saved me I'm guessing.  Now that they know this dirty trick I have to have my blood sugar tested.  Anyway, I drank a can of Dr. Pepper in the afternoon and maybe eight ounces more with dinner which included a very amazing pumpkin pie, and my blood sugar turned up to 174 so I had to get a shot.

I think I will stick to tea mostly for my caffeine qualification.  Maybe have 8 ounces once in a while.

Reguardless, you could guess what happens after drinking even a little bit of Dr. Pepper and eating pumpkin pie....   That's right, I had really bad HEARTBURN in the middle of the night, and had to take three tums and belch my way around the nurses station.

I think I'm going to go easy on the breakfast.  And dad-your guess was closer on the counts come morning. :)

Counts
WBC= 1.6
HCT= 27.4
PLT= 63

A good morning

After I had a full day of chemo yesterday, I was exhausted, I went to bed early and grouched at my CNA about being sleepy and having to pee, and my hat being full. (for those who don't know, they have to record everything that comes in or out, and I can fill the pee bowl (a hat) higher than the marks meant to measure the recording).  I apologized at one point during the night when I started to feel half human again.

I woke up at about 5:30 AM, and walked and did some exercises the physical therapist brought me yesterday.  She seemed to be excited to have someone request anything from her, when I asked for some small exercises, so I'm sure she'll be elated to find me some stretches to do today.

My aunt Lesa said that she wanted to come by today around lunch time, which should be good, and it sounds like my sister and Winter will be visiting again, so I haven't completely had my time to myself and my expansive crew of caregivers.  I just ordered breakfast and it sounds like they'll be giving me a blood transfusion today.

My line seems to be doing well, even better than the first time, wound care is on Thursdays, so I had just missed the last one when it was put in, but I can tell its really finding its home in there and is starting to itch a bit at the skin site.

And yes, I stole the beanie I was planning to last night before passing out.

Counts

WBC=1.1   :(  No kisses.

HCT=23.2  (this will get higher-yay)

PLT=88

First Winter Visit

Mom and dad headed back to Tuscon today, and my daughter came to visit.  I showed Winter where the glass displays were that she could color on to tell mom to get better, and she took up all the space she could reach.  The whole floor is talking about how cute it was.

I had an okay night last night, I got a depo shot which caused the opposite effect it was supposed to last night and got blood over everything, but I slept really well.  Today I started my chemo regimen with predenisone and a lumbar puncture, tonight I get the vincristine and one other.  I stopped and restarted my menstrual cycle, so that highly painful shot didn't do me much good.

I talked with the social workers I was supposed to meet yesterday, and when they said they could get me a wig, I told them how I'd rather have the hat on the wall, down the side hall and they told me to go take it before it disappeared, and that they had plenty of beanies to replace it with.

My husband has discovered the true power of a neighbor who wants to help desperately when he got home and found that our tree has been chopped down and the weeds where I wanted to put a zero scape have all been torn up.  I wouldn't be surprised if he woke up tomorrow to discover she's had her guys finish the job.  I hope my friends will take the initiative in offering different kinds of help to him, since he's so anti-social and doesn't realize like I do, how many want to do something, and anything even if its only to give him money to pay for gas to visit or keep up with bills.  Though I will gladly accept any company, books, and Dr. Pepper. :)

Counts
WBC=2.3
HCT=29.4
PLT=81

Day one

Today we checked into the new room at the hospital, room #802 if you haven't guessed.  Got here at about 10:00 and hung out, filled out a lot of paperwork for financial help and starting the regimen.  What I'm looking at is a month of heavy chemo, then they'll be searching for someone to donate bone marrow for a transplant.

As soon as I finished paperwork, I had a spectrum of blood draws and then went down to have an MRI, get a line put in again, (isn't it crazy that the young guy that wheeled me around most of the time for my lumbar punctures (spinal taps) 7 years ago is actually the PA who did my new line), and chest x-rays.  I ate breakfast at about 7am, and didn't eat again, 'til 7pm, was excited when food arrived, then the CNA comes in and tells me I have to have my blood sugar tested.  I'm like, I can tell you now honey, that its low. ;)

Counts

WBC = 1.5

HCT=25.2

PLT = 74