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.


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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.

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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.

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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.

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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.

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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.

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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
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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.

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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.

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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.

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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.

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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.

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