a·plas·tic a·ne·mi·a/āˈplastik əˈnēmēə/

Noun: Deficiency of all types of blood cells caused by failure of bone marrow development

Wednesday, August 31, 2011

Day 35

Well, I faced a very hard truth today.  I have been taking care of myself physically, but not emotionally.  Which is probably why I have been so down lately.  I have to realize that I have to take care of all of me, not worry about the baby or my family or my husband, and concentrate on me.  That means taking some personal time, do things I enjoy (at least what I can)., and not worry about being a good mother right now.  My son will know me later, but only if I take care of myself now. 

Someone asked me today to step out of myself and look at me/my life as someone else would.  It was scary.  I am a first time mom, with a 5 month old, whose husband is 5000 miles away, was uprooted from my home to deal with this life threatening illness, living with family members and requiring around the clock care.  I can't even get my prescriptions filled, because I can't drive.  

I am so thankful for modern day technology.  My husband and I facetime (like Skype) everynight.  I know he can't physically hug me, but when he tells me he is, I can feel it.  I miss him so much.

Happy Birthday to my Mother-in-Law, Susie!  Without you, I couldn't have gotten this far.

Thanks for all your thoughts and prayers.  Friends out there....its ok, you can call me if you want :)

Tuesday, August 30, 2011

Day 34

The doctors don't seem to think this polyoma virus is serious, so I'm not going to freak out about it.  It just means 2 more meds - another pil twice a day and IV meds once a week.  My kidney levels did go up a little from Friday, but not too bad. 

I've been kind of having some emotional days lately, I don't know why.  I think its because I miss Ryan so much and I feel so helpless here.

I am trying to really help out with the baby a lot more.  I even gave him a bath today, which he hated cause I suck at giving baths.  But I fed him his bottle and he went right to sleep.

Good night all!  Thank you for your thoughts and prayers.

Sunday, August 28, 2011

Day 32 - Just when I thought

Everything was going pretty good, something else has to happen :(  My blood counts were stable, my kidney tests were decreasing, my doctor visits have decreased to 2x per week.  Now, they discovered, they I have a polyomavirus.  No worries to the average person.  In fact almost 80% of adults have it and are asymptomatic.  HUGE problem for those without an immune system.  I will get more information tomorrow on which type and treatment, etc.  I just am so frustrated cause its more pills I have to take and the virus could possibly be attacking my kidneys right now.

I had a wonderful visit with my family today.  I got to see my mom, stepdad, brother and niece.  They helped me babysit while my in-laws took their Sunday off.  Aunt Jenny watched Kellan in the morning (thanks for letting me sleep in!)

Good night all!  Hope everybody's week is wonderful!

Saturday, August 27, 2011

Day 31

Yeah!  We made it past Day 30!  We are almost a third of the way to Day 100!

No real life changing events have occurred in the last 2 days.  My creatinine/kidney test came back much better, it is still high, but I only have to be seen 2x per week now!  Blood counts remain the same, WBC are normal, platelets are normal, RBC and HGB are just a little low.  These might be my normal counts from now on.  Dr. Sheffler in Hawaii said that our goal was to get my blood counts steady and transfusion independent, which I am both now!

Got out and went shopping for Kellan today.  That was fun! We went to Macy's and Dillards.  I spent too much money, but oh well, that is what it is there for right?  Then we went to Walmart to pick up my prescription and a few groceries.

Aunt Jenny is coming to help watch Kellan in the morning and then Grandma Donna and Grandpa Weldon and even maybe Uncle Logan and cousin Amber will come later to help.

Thanks again for all the thoughts and prayers!  Keep 'em coming cause they seem to be working :)

Thursday, August 25, 2011

Day 29

Tomorrow will be 30 days post transplant!  Yeah!  I've made it this far, gotta keep going for sure now :)

Nothing really new to report.  Went to the lab to get my kidneys checked again after they adjusted some meds.  It went down a tiny bit, but not much.  They gave me more fluids and sent me home.  Got more labs and doctor appointments tomorrow, so it will probably be a pretty long day.  I just hope they can get this kidney thing figured out and soon before it does permanant damage!

I want to thank Grandpa DeGhelder for taking care of Kellan almost all day!  I was more worn out than I thought.  I am so blessed to have such wonderful in-laws!

Wednesday, August 24, 2011

Day 28 Long Day

It was a long day at the clinic today.  My creatinine remains high, so they are pumping me with fluids, changing all my meds around, doing pretty much whatever they can to get it down.  So the fluids took 3 hours.  Dr. McGuirk must've thought that it would absorb into my body better at a slower rate.  Usually it takes 2 hours.  All I know, is it is usually a good time to take a nap!  I got a CT of my chest done today too for some pain in my upper right quadrant of my chest.  It feels musculoskeletal, so it is probably nothing.

We have good news on our house in Georgia!  We have a buyer with it on their "maybe" list and also possibly have renters.  I'm so glad we switched from ReMax to Blanchard and Calhoun.  We were fools before!

Not much else to report.  So goodnight all, got another appointment tomorrow for labs and probably more fluids :)

Tuesday, August 23, 2011

Day 27

Here we are approaching a month!  I guess I haven't really posted anything in the last couple of day because there really wasn't anything to report, which is good news! 

I go to the doctor tomorrow to check my counts and my creatinine (kidney test).  My creatinine has been really high, dangerously high, but luckily they caught it in time.  They took me off my anti-viral meds to help bring my creatinine down.  I wish they would take me off my anti-fungals too, don't work anyway.  Did you know you can get yeast infections on your body?  Well, I know its gross, but you can and its NASTY!  Been dealing with that since the day I got out of the hospital.

Kellan is doing good.  We fed him his first feeding of solids today.  He really seemed like he liked it...I swear that kid is going to be a human garbage disposal when he grows up!  He seems to be able to take anything anytime and still act like he's hungry.

Got a care package from Whitney and people from work.  Thanks for the hats!  They are awesome!

I appreciate all the help and prayers from everyone! 

Friday, August 19, 2011

Day 23

The counts are in and they are just a hair below normal!  The nurse said that it is unusual for your counts to recover so quickly but not out of the ordinary!  The best part is my ANC is staying in the normal range, so I am not neutropenic!  We did get a bit of concerning news.  They think my tacrolimus (anti-rejection med) is causing problems with my kidneys.  They've cut my dose to 1 mg in the AM and 1 mg in the PM.  I have to go in tomorrow to get it checked again.  They may give me fluids too, but I'm drinking the equivalent of 2 L a day and the doc said that was plenty. Who knows, I hope they figure it out quick otherwise I might become a good candidate for a study my old company was doing :)

So overall, I was pretty sick to my stomach today.  After vomiting up lunch and my pills, I decided to take a nap.  I woke up at 7.  Guess I needed it.  I was pretty exhausted today after the dr appointment and trip to Walmart.  Geez formula is so expensive!  If anyone has Enfamil coupons they don't need, send them this way!  Diaper coupons too!  I think I just got off track.

Thanks everyone for the cards and prayers, thoughts and gifts!  I'm so blessed to have you all in my life and am thankful that I have such a wonderful support system around.

Thursday, August 18, 2011

Day 22 and going strong!

Everyday I feel a little bit better and stronger.  Today I fed Kellan twice, burped him and put him to sleep.  We also took a walk and played on our play yard thing.  My in-laws took "a break" from me, which I don't blame them, for a couple of hours.  Anita watched the baby this afternoon while they took a break.  I wish I could've done it by myself, but I can't change his diapers. 

Tomorrow is my next doctor's appointment.  I've been really worried about my nausea.  The doc said I shouldn't be having any significant nausea and this might be a sign of graft vs host disease.  So for the last 2 days, I have chilled out on taking the Zofran.  My conclusion, my medications make me nauseous and sometimes food (or just the medications I have to take with food).  So hopefully that will help them determine if it is GVHD.  I'm also worried about some skin discoloration, my feet look really tan, significantly different than my legs.  They haven't said anything about it and they check my feet at each visit for whatever they check for, I think swelling or something.

So overall a pretty good day.  I feel good going to bed tonight.  Can't wait to talk to my hubby who supposedly has good news about work!

Tuesday, August 16, 2011

Day 20 - 80 more to go

We are 1/5 of our way to our initial goal of Day 100!  More things to celebrate....my platelet count was....drumroll please.....NORMAL!  The first time it has been normal since last August when I found out I was pregnant!  My WBC, RBC and HGB and not too far behind either.  Physically I felt pretty good today.  Even went out on a walk with the baby and my father in law.  It felt good.  Got some of my laundry started.  These little things make me feel "not sick."  You should've seen my outfit when we went for a walk, polka dot capris, adidas flipflops, a ratty MU t-shirt, a flowery scarf over my head, topped off with a blue and green plaid puma hat!  I also had a mask on, so I'm sure everyone who saw me thought I was crazy! 

Got an early appointment tomorrow.  We are going to try to feed Kellan rice cereal tomorrow.  I'm still not sure what I think about it.  I don't think he's ready for solids, but what is it going to hurt.  He'll be starting them in a month anyway.  We are trying to work on his sitting and rolling over.  For some reason he stopped rolling over, so today we spent a lot of time on our tummy.

Today was pretty hard emotionally.  Most days are, but today especially.  I just kind of felt lonely and isolated and wanted to wallow in my depression.  I eventually got out of bed and made it a day, but it was hard.  Luckiily tomorrow I don't have an excuse, cause we have to be at the doctor at 7:45.

Thanks again Anita for watching Kellan.  Hopefully it won't take that long.

Sunday, August 14, 2011

Day 18

It has been nearly 3 weeks since my transplant and I guess I should be happy with the results so far.  Though I don't have anything to compare them to, I've been told I'm pretty lucky.  So for that I am grateful, that and my sore throat is nearly gone.  I have to think good thoughts today because I'm feeling very down about a lot of things.  Now that I have settled in and routines have been made, I feel like a sick person because I can't do anything. I know it is for my own good, but geez I can't even change my own baby's diapers.  I just kind of feel like I'm taking up space.  I also miss my husband like crazy! I want to have energy but it takes all my energy just to eat a meal.  Today it took me an hour to eat a half of a bagel and then felt nauseas for 3 hours after that.

So tonight I am going to bed to focus on happy, good thoughts so that tomorrow I might not cry.  And even if I do, it can still be a good day.

Thanks Anita for watching the baby tomorrow for the doctor's appointment.

Saturday, August 13, 2011

I'm out and surviving!

Sorry for the long delay in posting.  It has been a very long couple of days.  The good news is, I got out of the hospital on Thursday!  I was so glad to be out of there!  Kellan wasn't home when we got home but he came home soon afterwards.  What a joyous reunion!  I think he was a little timid at first but now he remembers his mama!  He has gotten so big!  I can't believe how much he grew in 3 weeks! 

Ryan helped me get settled in.  We had a doctor's appointment the next day.  Dr. said my counts looked great!  I didn't ask him what they were because they were going to call me later with my Tacrolimus level.  New word:  tacrolimus-drug that prevents graft vs host disease and bone marrow rejection.  Its based on my blood levels, so it may have to be adjusted a lot.  Anyway, I never did get a call with my new tacrolimus level, so I figure no news is good news.  The day before, my counts were WBC: 2.6, ANC 800! Hbg: 7.6 and steady; Platelets 76 and rising!  2 parts of these counts are good news, well its all good news, but my ANC is above 500 no longer making me neutropenic (or really susceptible to germs) and my platelets have recovered.  They are suppose to be the last to recover but are recovering just as fast as my WBCs!  My counts are so good, the Dr let me have the weekend off from coming into the clinic!

Today Ryan left.  I can't believe it has been a month already.  I really wish he could come back and help me recover.  I really miss him alot.  I just want my family to be together once and for all.

So overall I don't feel great, but I feel better than I did when I was in the hospital.  I still have a lot of nausea and tummy issues.  My throat is stilll a little sore, but is slowly recovering.  I have a lot of mucus from the sore throat and it makes me throw up a lot.  The million pills I have to take sometimes makes me throw up too. I am still really tired and don't move around much.   It is hard enough to just take a shower.  The other day when I had the appointment and had to be somewhere at a certain time, nearly drug me down for the entire day.  But I made it through it.  Today was pretty tough with the nausea.  The nausea medication is suppose to last 6 hours, but it only lasts 3. 

Thanks to all who sent cards and kept me in your thoughts and prayers during my hospital stay.  It is still a long time till Day 100 our goal!  So keep them coming!  Also, my sister in law has the package sent in for where to send donations.  Hopefully things will be set up next week some time.

Tuesday, August 9, 2011

Days 8, 9, 10 and 11...and on through day 13!

Sorry folks for the delay in updating my blog.  I've had an extremely bad sore throat throughout these daus.   It seems to  be getting worse.  Hopefully, this is the worse before it gets better.  My blood counts sre rising!  They are still extremely low.and I believe that todau is my last day of chemo.

I'm on a lot of pain meds and feel loopy.  I can nod off in the middle of conversation.  Which I just did.  I'll write

Hi everyone; it's Ryan.  As I write this, it's actually day 13, Tuesday.  Andrya tried to write this the other day but for obvious reasons, what she wrote up above is as far as she got.  She was feeling some of the side effects, mostly a very sore throat.  She hasn't been able to eat hardly at all.  Not for lack of effort though.  She has been trying.  Fortunately she hasn't had much nausea the last few days so at least we haven't had to worry about her keeping down what she has eaten.  Because her throat was so sore she was on a ton of pain meds, mostly morphine.  So she's pretty much slept away the last 3-4 days. 

We've gotten good news the last couple of days.  For starters, it looks like early signs of the transplant successfully grafting are starting to show.  Her blood counts are going up...which leads me to the next bit of good news: the doctor has said that she is on track to actually go home on Friday!  She's very excited about this, as we all are.  So for those of you praying, send more our way that she continues to get healthy and the transplant continues grafting so that she can come home on Friday.  She misses Kellan so much and I'd love to be able to hand him to her before going back to Hawaii, which I do on Saturday morning.

Thanks for updating my blog today Ryan! I love you so very much! I hope this sore throat just disappears over  night.

Wednesday, August 3, 2011

Day 7

Today was a much better day for me.  I woke up and my spirits were high, the nurses and doctors weren't harassing me, so overall the day went pretty good. 

The most exciting thing that happened was that we shave my head finally.  It was falling out by the handfull so we shaved it.  I kinda like it too!  Ryan shaved his head to show his support, so did my friends Shannon and Kenny.  Thanks!  I don't have a huge selection of hats, so if you wanted to get me some something, you could do that.  

I guess another thing that lifted my spirits today was the hope that I could possibly get out of here in about 5 days!  Keep you fingers crossed that the bone marrow grafts and my cells start growing.  I'm still waiting for the worse to happen.  I believe I have some sores in my throat.  They don't really hurt, except for when I swallow.  It feels mostly like there is something caught in it.  My nausea came back today, but the medicines they are giving me are really helping with that.  Other than that, none of the typical chemo side effects right now and it is more than 24 hours since the last chemo treatment (methotrexate).

Thanks for all the continued support and prayers!  Somethings working :)

Monday, August 1, 2011

Day 5 An Emotional Wreck

There isn't much different today than yesterday.  The docors and nurses continue to be irritated with me and I with them. 
My hair started falling out in  clumps today.  A lot of hair fell out.  I thought I'd be excited for this, but it made me cry.  I blame these ups and downs on that birthcontrol pill they started me on. 

I don't feel like I have a lot of strength left.  Everyday I have to reach down deep to find something encouraging.  and yet, the worst is yet to come.Day 7-10 are suppose to be the worse. So only a couple more days of anticipating that. 

I just want to get out of here and on with my life.  I want to rewirnd to June 2010 and not have gotten pregnant. But I cannot do that. Somehow I will get through this.