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