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, December 28, 2011

1 Year Anniversary

1 year ago today, I was diagnosed with aplastic anemia.  I was 5 months pregnant and had no idea there was anything wrong.  It was only because of a minor traffic accident that we found out.  I can't believe it has been a year and and I can't believe how well I am doing!  I'm so thankful that I have a beautiful, wonderful son and a very supportive and loving husband.  Without them, I don't know where I would be in my recovery.  Tomorrow I go in for more labs and a doctor visit.  I'm also getting an MRI of my hip, which keeps hurting off and on for no reason. 

Thursday, December 22, 2011

Day 148 - Perfect!

All of my labs came back perfect today!  I'm so happy for this!  I still have some significant fatigue and occassionally some nausea, but other than that I am doing great!  I couldn't have asked for anything better!  So I hope this gives hope to other bone marrow transplant patients.

Otherwise, life is getting better and better.  I'm still with my parents, but I leave on February 1st to relocate to Washington DC.  My husband leaves Hawaii tomorrow and will be in town for about a week.  He'll then drive to DC around January 2nd and start house hunting and waiting for our household goods to arrive.  They are expected to arrive around the end of January, so we are waiting for them to arrive before I go.  We don't know a lot about the area, so if anyone has suggestions on where the good areas are to live, we would appreciate it!

Kellan said Dada today!  He's also dancing and pulling himself up.  He still isn't crawling, probably because he can't get his pudgy belly off the ground!  He really enjoys spending time with Jack and Sam, my friend's kids.  I'm so glad he can socialize now.

Thanks everyone for your continued thoughts and prayers.  This has truly been a rough and bumpy journey!  But things are starting to get better and better each day.

Happy holidays to everyone!

Thursday, December 8, 2011

Day 134 - Great News!

Today started out with such an exciting start!  On our way to the doctor, we stopped for gas and I had a dollar in my pocket, so I bought a $1 scratch off ticket.  I thought, what they heck, its only a dollar.  I got to the car, scratched it off and won $500! 

My appointment went great too!  My counts are good, even though I have a slight cold/runny nose.  I am now to every 2 week appointments!  They stopped my ursadiol as well!  That's the medication that is suppose to protect my liver from GVHD.  So that was all wonderful news!  I do have to go back next week, just for labs and to get my antibiotic treatment, but no doctor visit!

Kellan had an excellent day at my friend Trisha's house.  He had a blast with Sam (5) and Jack (3).  He is going to sleep good tonight.  I really need to get him into some play groups, he is such a social butterfly (or whatever you call the male equivalent). 

I'm still enjoying staying with my parents.  I am thinking about going to Hawaii for a couple of days, but have to work out the logistics.  As much as I would love to take Kellan, I just think that it would be too much for me to handle and too much for him as well.  So its either just me or not at all.  Its a tough decision, but I really miss my friends from Hawaii and would really like to help my husband out with the pack out (when the movers come to pack our stuff).

Thanks, as always, for keeping me and my family in your prayers and thoughts!

Thursday, December 1, 2011

Day 126

It has been awhile since I posted.  I was pretty busy the last couple of weeks.  My husband was able to come and see me for Thanksgiving, so that was really nice.  Kellan and I both miss him terribly already!

My counts have been good.  My hemoglobin has climbed back up to 11.6 on Monday.  Normal is 12.0, so we are close.  I was told to expect fluctuations for awhile.  My liver tests were a tad high too, but nothing to be concerned about.  They are probably going to fluctuate as well.  The nurse practitioner indicated that I might have a tiny bit of GVHD in my liver.

I've now moved into my parents house, about 2.5 hours away from the hospital.  I am still going weekly for check ups, but I feel a whole lot better now that I'm with my family.  My in-laws did so much for me and I am very grateful for everything they have done. 

The worst news I received this week was that I am in menopause now, so no more kids.  Its kind of devastating, but I knew that there was an extremely high chance of this happening.  I am happy that I got to have 1 child and he is the most amazing little boy!

Thanks for everyone's continued prayers and thoughts.  I will be eternally grateful to my husband, parents, brother, in-laws and friends for all their support.

Tuesday, November 15, 2011

Day 100 Results!

My Day 100 results are back and everything is great!  My marrow is now 100% my brothers and there doesn't seem to be any complications.  My risk of GVHD is now decreased.  My counts were about the same as last week, which means they have stabilized.  The doctors are going to monitor me weekly to see if they stay steady, if not, and if they decline, they are going to do more tests.  My liver function tests are much better too!  They took me off of my antibiotic last week and that seems to have really helped with the liver function tests.  My kidney tests are good too.  My iron is still really high (from all the red blood cell transfusions prior to the transplant).  I am going to have to wait 3-6 more months before we can do anything about that.  The only way to get rid of the extra iron is to do phlebotomies (remove blood). 

Though this is all great news, but I felt the best about telling the doctor how I felt.  I asked Dr. McGuirk (the main doctor that I have been seeing) last week to do me a favor and to please not have Dr. Ganguly review my Day 100 results with me today.  First thing this morning, who walks in to my room, but Dr. Ganguly.  Man how I was angry!  I dislike this doctor because he talks "at you" instead of to you, he replies to questions with "because I am the doctor", his bedside manner is awful, he treats you like you are part of an assembly line, etc.  I could go on forever about how I dislike him, including how he wrote in his dictation on my very first visit that he did a complete physical exam, when he didn't.  So today I asked him to stop talking down to me an that I wasn't stupid.  He denied that he was doing it, so when he continued to do it, I pointed it out to him.  Of course he didn't like it, but he needed to know.  My mother-in-law said I was lucky he didn't fire me.  I responded to this statement with, "He's lucky I haven't fired him!"  So after my mother-in-law told me this, I thought it would be good to talk to my therapist about it.  She was proud of me on every level.  She congratulated me for being my own self advocate.

To everyone out there that may not know me or may know me very well, my thinking about doctors is very different than most.  To me, doctors are no better than you or me.  They are not smarter than you or me.  They may be smarter than you or me when it comes to medicine, but everyone has their strengths, who's to say a doctor is smarter than an architect.  When I was a Clinical Research Associate, my job was to go to doctors offices and tell them what they were doing wrong.  I usually never had a problem with that.  Now the tables have turned and when it comes to my own doctors, I have trouble telling them how I feel about them, and trust me, I do NOT ever have a problem telling people what I think of them.  It is very important when you have a serious illness like this, for your doctor to know you, to know you personally, as well as medically.  My doctors at KU have NEVER taken the time to get to know me.  They don't understand my situation, they don't know what I am dealing with emotionally, mentally or physically.  Of course, there are always common denominators with all patients, but each person is an individual, with individual stories.  How can my doctors, who are all male, understand what it is like to be a new mother and living away from her husband and having limited help at home with the baby and dealing with post-partum depression.  Maybe if they would've taken the time to ask, they would have a better understanding of why I have an emotional outburst when I don't feel like anyone is listening to me.  So please, be your own self advocate.  It is ok to question your doctor and he/she should not make you feel bad about this.  You have the right to have your questions answered.  You have the right to understand why they are doing what they are doing.  I had a question while I was in the hospital about why they were giving me Methotrexate (a chemo drug) and what side effects I could expect.  Dr. McGuirk's answer was, "Its in the informed consent, we already went through this with you when you signed the consent (2 weeks prior).  If you have questions, you should read your consent form. You can expect things to get worse before they get better."  I was just absolutely LIVID about this!  I know that it is the doctors responsibility to answer these questions.  I was half out of it, if not completely sometimes, and it was MY responsibility to look something up, when he is suppose to know this stuff inside and out?!  And then he was surprised when I told him to get the hell out of my room.  What does he expect?!  And by the way, things didn't get worse before they got better.  So I may not be an expert on being a self advocate, but I try at every appointment to make sure that I understand completely and fully the reason why they are doing what they are doing.

Alright, enough about that.  I got cleared to go to my parents house, so I am going this weekend.  I also got permission to go back to Hawaii to visit my husband, though, I probably won't go because he is coming here next week for Thanksgiving!  I also got the ok to eat Chipotle, my favorite burrito place!  So that's what I had for lunch.  Overall, this day was awesome!  I feel like I am on top of the world and that I have kicked this aplastic anemia's butt!

Monday, November 14, 2011

Day 111

Today is the day that I get my Day 100 results.  I am still really nervous, but was able to distract myself this week, which kept me from becoming a raging worry wart.  I actually feel pretty good, like my counts are high.  Hopefully the gradual decline in my hemoglobin and red blood cells over the last month was just  a fluke.  Its 12:45 am and I am not a bit at all tired.  I have to get up in 5 hours to go to the doctors office. 

Wish me luck and say a prayer!

Tuesday, November 8, 2011

Day 104 - Good News? Bad News? I'm Confused!

Today was my first visit after my bone marrow biopsy.  Dr. McGuirk came is and was all smiles with good news.  He said the preliminary results were looking good.  My cellularity is good (that is the amount of cells in my bone marrow), my T-cells are higher than he would expect (white blood cells that help with immunity and stuff), my liver ultrasound looked great (no more fatty, enlarged liver).  I asked him about my counts being low and my bilirubin and LDH (liver tests) being high.  He thinks it is the medication I'm on.  We won't know for sure until the final results come back and the big picture is evaluated.  They are taking me off the Dapsone (antibiotic) and going to an inhalation antibiotic.  My hemoglobin was 9.8 and my RBCs were 2.9.  They haven't been that low since before I left the hospital.  ***Sigh***  I just feel like I can't ever get a straight answer from anyone.  I want to be hopeful that it is just my medication, but I've been on the same dose and same kind of antibiotic since August.  I don't want to set myself up for a huge let down next week.

After I got back from my appointment, I noticed Kellan had a runny nose and watery eyes.  Called his pediatrician to get an appointment right away because the last thing I want to do is get sick myself.  So he has a cold and I have to stay away from him for a day and a half or until his symptoms subside :(  And he does NOT like that snot sucker upper thingy!

I had a long day and I'm already super tired from my low hemoglobin.  I'm sure it is going to be a long night with Kellan as well.  Even though I can't touch him, his crib is in my room and so I'm going to wake up everytime he cries.  I need a nanny!  Just kidding :)

Thank you for all of your thoughts and prayers!

Saturday, November 5, 2011

Day 100!

Yeah!  I finally made it!  Though it wasn't as exciting as I thought it would be.  I got an ultrasound on my liver and the tech said that it wasn't fatty or enlarged like last time.  I also got lab work done.  The tests that come back immediately were not so good.  My WBC, RBC, HGB are still low.  The RBC and HGB dropped from last week.  The WBC stayed the same.  In addition, my liver tests were high.  My bilirubin was almost 2x the upper limit of normal, which is really bad.  Also, my lactic dehydrogenase was high.

My interpretation:  The breakdown of red cells will cause your hemoglobin to decrease.  When red blood cells break down, they are filtered through your liver and will cause your bilirubin to rise.  When your bilirubin rises, your urine turns dark.  Thus, this fits the definition of PNH.  So since I have all the symptoms, I'm concerned that my PNH did not go away.  Booo!  And now I have to wait to Nov. 15 to find out, because the last piece to that puzzle is the DNA confirmation, which they got from my biopsy.

My bone marrow biopsy went great!  So much better than the last time!  We just want good results to come back now.

Lastly I had pulmonary function tests done and the tech said that all of these were better than the last.

My next doctor appointment is on Tuesday.  Hopefully they will be able to tell me at least a little something by then so that I don't drive myself crazy waiting for the 15th.

Wednesday, November 2, 2011

Day 98!

Only 2 more days!  Friday is the day that all of my Day 100 testing will be done.  They will be doing and abdominal ultrasound, labs, bone marrow biopsy and breathing tests.  Please pray that these results will all come back good so my family can be reunited.  There is a downside though, I've been waiting for Day 100 like the honey badger stalks snakes, but unfortunately, I won't be getting my results until the 15th :(  *Deep breath* I can wait 11 more days, I've waited this long, whats another week and a half.

I had an appointment on Tuesday and I met with the NP.  I feel so much more comfortable talking to the NPs than the doctors.  Anyway, I was able to express alot of my concerns about GVHD.  Unfortunately, there is no way to be certain any of my symptoms or labs tests or physical signs are GVHD.  By that, I mean, my liver tests were even higher than last week.  If it is GVHD, most likely they are going to put me on steroids and I do NOT want that at all.  Steroids make you fat.  They also increase your blood glucose and prolonged high blood glucose can lead to diabetes.  My blood glucose is already high...which could be a side effect of the Tacrolimus (anti-rejection/immunosuppressant).  I think most of these unanswered questions will be answered on the 15th though, at least I hope.

My husband is going to try and take convalescent leave between now and his next orders.  I really hope he can, I have been really tired lately and my back and head hurt everyday.  (Again, I was told it was probably a side effect of the Tacrolimus).  I just want my family to be back together again.

For now, good night.  Thanks for continuing to pray for me and my family.  The hardest part of this journey is coming to a close, but there is still a long road ahead.

Tuesday, October 25, 2011

Day 90

I am so excited to be 3 months post transplant!  I only have 10 more days until my first goal of Day 100.  I had a doctor's appointment today and my counts were a little low.  Nothing to be too concerned about, but they all seem to be following a declining trend.  I'm not too worried because this has happened before.  The most concerning thing was that ALL of my counts were low today.  Usually it is just 1 or 2.  In addition, my liver tests were high.  Not too bad for a couple, but they ended up doing extra tests (indirect and direct bilirubin) to make sure that I wasn't getting graft vs host disease in my liver.  The extra tests came back ok, so the doctors are worried.   I know I worry way more than my doctor's do, but that is what happens when you understand the significance of your blood work and possibly what it can mean.  Good news though, my kidney tests are FINALLY back to normal!

Once I get to Day 100 and my counts are stable and I am healthy, I can go outside a 30 min radius from the hospital.  So, I want to go spend some time with my parents.  Nothing is set in stone, but my MIL and FIL got a little upset that I hadn't discussed this with them.  I hadn't even discussed it with my husband yet!   Anyway, I put their mind at ease, letting them know that I had thought everything through, and that I was going to try things out by staying a weekend and then deciding if it was a good idea.   I have to keep in mind that the hospital is going to be 2.5 hours away and need to ensure that I have plans in place for Kellan if he or I get sick.   So, still nothing finalized and I definitely want to get my Day 100 test results back before anything gets decided.

Anyway, on to another topic, I've noticed over the last couple of days that Kellan is getting separation anxiety.  I will walk out of the room for just a second and he starts wailing until I come back.  Gotta work more on his object permanence so this habit does continue :)

I get to go out tomorrow with my friends, Matt and Stephanie!  I'm so excited to get a chance to get out of the house!

Friday, October 21, 2011

Day 86 - Reminiscing

I just got done speaking to an old friend from college a little while ago.  I love thinking about that time.  College was one of my favorite parts of life for many reasons.  First, you get independence for the first time.  Nobody telling you what to do or where to be.  Then you have all the wonderful friends you meet.  I met my best friends in college.  In my life, I have met many people from all over, but my friends from college have always been a constant in my life.  You grow and learn so much during those years.  You begin to form your own identity.  Being from a small town in the midwest, you kind of tend to get labeled by who your parents are, or who your siblings were, or where you lived and what kind of car you had.  When I went to college, I got to start all over.  Nobody knew me and I loved it!  I just love thinking about all the fun times I had and sometimes wish I could go back in time and just stay there.  But, eventually we all grow up, become adults, get jobs, have families.  Life is so very short.  Thinking back, I just never could've imagined the topics that I speak to my friends about now.  It is no longer, what party are we going to or what time are you taking that history class.  Now its did you know so and so has this condition, or so and so got divorced, or where is so and so, I haven't spoken or seen them in 10 years.  Its amazing how life changes in such a short time. 

My labs looked pretty good this week.  My kidney tests are nearly normal (1.04, the normal range is .6-1.0).  My blood counts were good.  Day 100 is looking better and better!  Only 14 more days!

Thanks for all your support and prayers. Please continue to keep me and my family in your thoughts and prayers. Even after Day 100, I still have a long recovery period.  The first 100 days after transplant are the most critical, but there is still only a 50-60% survival rate through Day 365/Year 1.

Sunday, October 16, 2011

Day 81 - Hair News

I am happy to report that my eyelashes and eyebrows have started growing back!  I didn't lose them all, but they were getting pretty sparse.  Hopefully my hair on my head will begin growing back soon.  Who knew how much a bald head affected your overall temperature.  I have been just freezing since I lost it.

Things are going really well.  I only have 19 more days until Day 100.  It is coming up so soon and I am getting so excited!

Tuesday, October 11, 2011

Day 76 And All Good News!

Went to the doctor today and everything was wonderful!  My labs are almost all normal!  Everything is stable and good. 

For my fellow aplastic anemia people, what have you heard or experienced at John Hopkins or University of Maryland.  I need to choose between the 2 and they are both equidistant from where we are going next.  I've heard good things about both places.

Monday, October 10, 2011

Day 75!

Wow! 3/4 of the way to Day 100!  I thought that Day 100 would never get here and now it is almost upon us!

Today marked a milestone...I got to discontinue one of my prophylactic medications, the antifungal that is assisting in my kidney tests to be high.  I go to the doctor tomorrow, so lets pray that everything remains good with my labs and symptoms and I don't have to go back on it.

Things have been going really well the past week.  I have been extremely fatigued as the doctor wants me to be "more active."   He told me last week that I should be walking a couple miles a day...silly doctor, I wouldn't even do that if I didn't have aplastic anemia!  I know I should be getting more exercise, but it is hard, when I am so tired from taking care of the baby.  I have had to start taking care of Kellan a lot more because of my in-laws' situation, so I have basically went from helping take care of Kellan to almost taking care of him completely.  It is hard, but someone has to do it.  I am very thankful that my mom has been able to come and help a couple of days a week.  She lives about 2.5 hours away, so it is quite a trek. 

I'm keeping my fingers crossed that the doctor will give me the ok to go visit my husband in Hawaii shortly after Day 100.  They are so worried about me catching the flu on the plane.  Why'd they give me that darn flu shot then?  Oh well, I'm pretty sure I can convince them eventually.  I just miss him so much!

As always, thank you for keeping me in your thoughts and prayers.  Please feel free to share my blog with friends and family.

Thursday, October 6, 2011

Day 71

Its amazing what a little bit of sunshine and getting outdoors can do for you!

This last week has been the most difficult so far, not for symptoms, but emotionally.  This journey is mentally and emotionally draining, more than physically draining for me.  Though, they all are inter-related since you are physically drained from being emotionally and mentally drained.  Everyday this past week, I have had to tell myself over and over again, I just got to get through today.

Anyway, I feel like I am getting back to myself again.  I even laughed a couple of times today!  I got so much stuff done today even though I was tired from Kellan having a bad night last night (I was up at 2 am and probably only got a half hour sleep between then and 7:30 when he got up).  I felt so accompllished!  My day didn't start that way, but I'm glad it ended the way it did. 

I am happy to say, that I am looking forward to tomorrow!

Monday, October 3, 2011

Saturday, October 1, 2011

Day 66

Two-thirds of the way to Day 100!  I feel like I'm doing great too.  My biopsy from my GI track came back negative for GVHD, but positive for Barrett's esophagus, a condition that could become cancerous later on.  Oh well, it is just from acid leaking into my esophagus weakening that tissue.  They put me on Prilosec for it. 

Had a pretty productive talk with the doctor on Friday.  They are always so vague when you ask a question, but I forced an answer out them finally regarding my status.  He thinks that I am doing very well and though he cannot say with certainty that I can leave at Day 100, he does not think I will need to be here for 6 months.  Ok, so at least we got it narrowed down from 3-6 months :)

My counts are doing much better.  Last week, I must've just had a mild "bug" or something.  Even my kidney tests came back good.  They are only .12 away from being normal again!  Hallelujah!  Now we have to watch my liver tests, they keep going up, but only slightly. 

Today was a pretty sad day though.  We said good bye to my sister-in-law and brother-in-law.  They were such awesome helpers through these first 2-3 months.  Thanks Anita and Chris for everything!  Safe travels to you as you head to your next big adventure in life!

Everyone has talked me out of my pumpkin fundraiser now.  Guess I should've saw that one coming.  I personally thought it was a good idea, but the doctors don't think so and neither does my mother-in-law.  So scrap that and on to the next idea.  Taking suggestions...

As always, thank you for keeping us in your thoughts and prayers!

Tuesday, September 27, 2011

Day 62 With Good News!

In the beginnIing, because of my complicated situation of having AA, MDS and PHN, the doctor's told me that they would want me to get a little bit of graft vs host disease.  Well, right now that is exactly what I have a very mild form of GVHD in my skin.  We still don't know the GI results yet, but the meds seem to be working.  Also, we are now carefully watching my liver functions tests to see if they continue to go up, which would indicate a little bit of GVHD in my liver.  The blood chemistry results today could not be very accurate because I was not allowed to take my morning meds and wasn't allowed to drink water until 4:00 PM.  With that said, I am quite surprised that my kidney test came down a little again today.  My blood counts were exciting as well, my WBC, RBC, HGB and platelet count all went up from Friday.  I'm wondering if I had just a slight little bug that got me down for a week.  Anyway, I walked out of the clinic today happy as a lark!

I'm also excited to report that my winter clothes came today!  Hopefully no more coat wearing in the house anymore!  But what also came with my winter clothes was my Wii!  I set it up (unsuccessfully).  I have a feeling the technology here at my in-laws may be a little too outdated for the Wii.  If anyone wants to jump in and tell me how to do it, I'll explain that I hooked the co-axial cables into the digital cable box because it was the only thing that had outlets for them.  I first had them in Audio out 2, then switched to the ones on the front of the Time Warner box.  I looked at their DVD player, but I don't think theirs has addition hookups in the back.  So my Wii is hooked up through the cable box and that is as far as I got.

My father-in -law is going back to work next Monday for about a month.  If you know of anyone in the KC area that would like to help with babysitting in the morning we'd really appreciate it.  Hours would be from 7-10 and probably only on Monday, Thursday and Friday.  Ideally we would like someone to volunteer their time, but understand that in this economy, that is most likely impossible.  Please pass me an email if you know of anyone interested and a basic biography of them if I don't know them. 

So today I feel pretty good, about as good as I have felt in a long while.  It is amazing how a little bit of news can change your whole day!

Today I ask that you pray for my husband.  He is about to take his board tomorrow.  It is kind of like when doctors go before a board to get board certified.  This is the last puzzle piece we need to have to going on our next adventure after I get better (which Day 100 is only 38 days away!)  We need him to pass this more than anything.  Please pray for him to have the stamina, courage, knowledge and confidence he needs to pass this.

Saturday, September 24, 2011

Day 59 - Not So Good News

Friday I went to the clinic to get my counts repeated from Tuesday.  They really just wanted to retest my kidney function test, but did a CBC as well.  Neither result came back good.  My kidney tests are staying the same, so the longer they are high, the more at risk I am for permanant kidney damage (though I'm pretty sure we are a long way away from that occurring).  The more disappointing news was my counts dropped, specifically my platelets.  They went down 30,000 in 3 days.  Not a good sign.  I have also been have some "stomach" troubles and had that evaluated.  The doctor is pretty sure that it is graft vs host disease in my GI tract.  I also went to the dermatologist on Friday and had 2 biopsies done, to confirm skin graft vs host disease.  So they put me on some steroids for my GI tract.  Monday I go in for a GI biopsy (how fun).  There is some good news, I will get my trifusion catheter taken out on Thursday (pending all these appointments).  I will be so excited about that!  I dislike the catheter greatly because it is a pain to take a shower.  Nothing works covering it up and keeping water out of it.

Kellan had his 6 month appointment on Friday as well.  He weighs 19 lb 2 oz.  So he is a little chunk.  We started him on baby food in addition to cereal today.  He had green beans today, he seemed to like them.

This week I got a love package from my friend LeeAnne who sent me 2 hats and 2 wigs.  They are just great!  Love you lots LeeAnne!  I also got a package from my husband that included a Mizzou hat and jacket!  Thank you baby! We got a honey baked ham and pie from the Golden's and a burrito casserole from one of my mother-in-laws friends.  Food is always welcomed in this house. :) Lastly I got a letter from one of my followers.  I think that it was the best out of all the packages!  Please pray for this friend who is about to endure an investigational treatment for Aplastic Anemia.  She is going to need lots of love and support from everyone.

I also got some hobbies from Hobby Lobby today so that I have something other to do than sleep and watch tv.  (Though sleeping is a hobby of mine for a long time if you know me well enough!)

Big day tomorrow, have to go to the clinic and go to Walmart with Kellan and my parents.  I should probably double my morning ativan :)

I have a fundraising idea that I would like feedback on.  I would like to sell pre-painted jack-o-lanterns for Halloween/Football Season.  There would be no carving and they would be sports themed since there are so many teams in the area.  I don't know how much a pumpkin costs, but if I could get some help with the painting I could probably sell them on  craigslist or at craft shows and make maybe $5.  Any thoughts?  And btw, we would use patterns, this girl ain't got no artist in her :)

Please tell your friends about helping out with donations as well.  Maybe you can't afford $25, but if you got people say at work or your closest friends to donate a couple of dollars here and there, you could get $25 very easily!

Please continue to get me and my family in your prayers and thoughts!  They mean a lot to us.

Sunday, September 18, 2011

Day 53

I feel extremely frustrated with my situation right now.  I feel better, but yet I'm not.  I want to go do stuff on my own, and can't.  I want to eat foods like pepper, without thinking twice, but I must not.  This is all stemming from yesterday's encounter at the clinic when I was told that it was pretty much a can NOT do to go to Hawaii after Day 100.  I don't see why not.  First of all, they don't have the flu in Hawaii and if they do, it is usually contained within the "tourist" population.  Second of all, that's where I currently live.  They are telling me I can't go home!  I WANT TO GO HOME!  And only for a week or two.  Out of rebellion, today I ate a donut from Casey's which I'm not allowed to eat and made it worse by it being a Day Old donut.  Then at dinner, I ate cold roast beef.  I may regret this, but I was just at a point today where I just wanted to say ^&*%$ it! (I at least microwaved my pepper)

I am just going to keep doing what I'm doing and prove to these doctors that there are people who can make it through recovery in 100 days.  Just like I proved to Dr. McGuirk that I wasn't going to die in my hospital bed of a bad attitude.  And how I proved to them that it doesn't always get worse before it gets better.

Obviously, I am having a pretty bad day.  I did a good job of covering it up.  I didn't want to ruin my parent's visit with Kellan.

One day at a time, tomorrow will be better....

Saturday, September 17, 2011

Day 52

I went to the dr today for an unscheduled visit for something that looked like a rash on my arm.  And because I got myself paranoid about dematologic graft vs host disease.  There was good news and bad news.  The good news is that the Nurse Practitioner does not think it is GVHD.  The bad news is that she told me that she was not going to let me go back to Hawaii on Day 100, even if I am feeling better.  I threw my adult temper tantrum, wollowed in my own self pity, then went shopping for Kellan.  The shopping made me feel better.  We got him a jumparoo.  His legs are a little short for it.

For my followers, don't hesitate to post my blog entries on facebook or twitter or whatever you can.  I actually encourage it.  Just click on the icon at the bottom of the post.  It may be grayed out.  If you aren't already logged into the program, it will make you log in (just a warning so that you aren't afraid its going to steal your password or anything). 

As always, thank you for your prayers, thoughts and support.  My parents and Aunt Jenny are coming tomorrow to help me with the baby.  It should be a fun day!

Thursday, September 15, 2011

Halfway There!

Today is Day 50!  I am so very excited, we went out and I bought cheesecake and an ice cream cake to celebrate! Now I've had too much sugar and can't sleep :)  I can't believe that we are halfway to Day 100! It seemed so far away when this all started and now it is going by so fast!

Tuesday was my doctor's appointment at the clinic.  Very good news there as well.  The BK polyoma virus is nearly undetectable, so they took me off all those meds, including the IV anti-viral!  Yeah! My platelet count dropped, but nobody seemed concerned so I wasn't either.  My other blood counts are doing well and I feel like I am getting some of my energy back.  I've even cooked a couple of times!  My kidney tests came back the same as last week, so I'm drinking water like crazy and trying to get that down.

Wednesday, we had the DeGhelder family over for Chris's going away.  Chris and Anita are moving and they have been so wonderful to us, we cannot thank them enough!  We will miss them and I'm glad that we got to have a family dinner before they left (minus Ryan, but he was there in spirit).

Nobody believes me, but I'm booking my ticket back to Honolulu for November 4th (Day 100)!  Everyone keeps telling me to not to get my hopes up.  I'm not, I just know I will be ready!

Here something to laugh about.  My nurse on Tuesday came into my room and as she was introducing herself, I interrupted her.  I told her I knew who she was, she was my neighbor across the hall in Freddy!  (Freddy was the dorm at SMSU, now SMU).  I hadn't see or heard from her for like 14 years, and here she is as my nurse.  The funny part about this is that last time I knew her, she was a stripper :)

We still need lots of prayers and thoughts and love coming this way.  We found out that we are responsible for my donor's traveling costs, which are quite a bit considering they made him drive over 100 miles one way at least a dozen times or more, plus food, etc.  Glad we didn't have to fly someone in from Europe!

Ok, goodnight all!  Hope everyone has a fantastic Friday and an excellent weekend!

Monday, September 12, 2011

Day 47

Not much to report today.  I have been having a lot more energy lately, meaning, I can stay awake throughout the day.  Trust me, I want to sleep, but between spending time with Kellan and running errands, picking up prescriptions, making unscheduled visits to the clinic,  I don't have a lot of time.  I don't know how my mother and father in law are doing it.  Thank goodness we are almost halfway there!

If you were having trouble becoming a follower, go to Day 36 and read Ashley's comment. 

Don't forget to spread the word about donations.  I believe we just incurred a cost that we though was going to be paid for, but now its not.

Thanks again for all your prayers and support that continue throughout my recovery. 

Friday, September 9, 2011

Day 44

56 more days left...we are almost halfway home, literally :)  November 4th is Day 100, and by golly I am going to have a ticket booked to Hawaii that day for Kellan and I.  As you can tell I am getting a little antsy.  I still have a long way to go though in 56 days.  My fatigue is still really bad.  We went grocery shopping for about an hour and came home to have to take a 3 hour nap.  Well, the nap was mostly so I would have energy for game night tonight with the niece and nephew.  Game night, of course, was fun.  Isaiah won battleship, Alisa and I won the alphabet game (twice), and then I won Master Chatters or something like that.  It was fun to get to spend some time with them before they head of to San Jose at the end of the month.  11/12 of the DeGhelder family are in the Kansas City area, at the end of the month/beginning of next month it will be 7/12 and at the beginning of November it will be 5/12.  I know my in-laws really appreciate having most of their family here close to them, even if for a short time, but I think that it is going to be hard to see my brother in-law and his family move to San Jose.

No real news on the medical front, no doctors appointments until Monday, in which I have to meet a PCP that I will never go to ever again so that they know who I am when they start getting all these referrals/authorizations.  Then Tuesday, I have my IV anti-viral infusion/dr appointment at the BMT clinic. So till then we should be good!

I really haven't been working on the emotional part of my healing really well.  I do actually do the 2 things I love doing most, sleeping and watching movies!  I'd like to just get out and do something on my own though, no chaperone/caregiver.  I just need to be patient and it will come.

The donation stuff is finalized.  I'm not sure how to get on the blog, but I am going to try my hardest tonight.

The nicest thing happened to me today, a random person in Walmart came up to me and touched me on the shoulder and said "Praying for you baby" and walked away.  So nice!

Wednesday, September 7, 2011

Day 42

Sorry it has been a while since my last post...as the doctor's always say, no news is good news, right?

My labs are still looking good.  My kidney tests are still coming down which is good.  They have decreased my appointments now to weekly.  So for the next couple of weeks I'm getting an antiviral through the IV at my appointments and as long as my blood counts are good, no further treatments are needed!  (Well except for the bajillion pills I have to take every day).

I was really fatigued today I guess.  Came home from getting labs done, probably around 10.  I went back to bed and slept till 5.  I couldn't believe it.  I sure hope I can sleep tonight.  I don't think I'm going to have any problem though.

My parents came up on Sunday and saw me and helped me take care of Kellan and my friends, Matt and Stephanie visited yesterday!  Its so nice to have visitors!  It really got my spirits up to see some friends and visit with people other than my in-laws (no offense Joe and Susie :) )  I really wished I could've gotten Kellan in the pool before it closed, but oh well, it got cold really fast and time just got away from us.

We just finalized the letter for the tax deductible donation thing, so hopefully it will be up and running by the end of this week or next if you are still waiting to donate.  Even if you can't donate, we always appreciate your thoughts and prayers!

Thursday, September 1, 2011

Day 36

Went to doctor today and I feel pretty good about the visit.  I got all of my questions answered, well most of them got answered, the others I got the typical "we don't know" answer.  Oh well.  My blood counts came back steady, though my platelets are trending down.  I'm not going to worry about this until the doctors worry about it though.  It is probably nothing.  My kidney tests came back a little better today, still high, but getting closer to normal.

When I talked with my husband last night, he brought up an interesting point.  He is going through this with me even if I am 5000 miles away and it affects him too.  He stated that he doesn't know how to differentiate between feeling sorry for himself, wanting/needing attention or actually feeling sad.  I have to agree, I don't know where those lines are either.  When people ask me how I am doing, I always say "fine."  It seems like the neutral feeling to have when you don't know what category you are in.  Maybe I'm not just "fine," maybe I need to tell someone I am sad and want a shoulder to cry on or someone to talk to, but I'm afraid, people might see me as being in the "needing/wanting" attention group.  I hope that makes sense.

I have a 4 day weekend this weekend.  Anita is going to come over on Saturday and help me with Kellan.  We are going to take him to the pool.  Don't worry, I'll fully protect myself from the sun and Kellan too, we all know how transparent he is :)

Well I think that is all for tonight.  Thank you for your thoughts and prayers!

Also, if someone could comment on how to become a "follower" I'd appreciate it.  Several people have had trouble.

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.

Sunday, July 31, 2011

Day 4

Its me, Andrya, this time.  Today was a pretty bad day emotionally.  All I want is to get out of this hopsital.  My docotors and nurses keep telling me to get up and walk and do the breathing machine and eat.  This pisses me off more than anything, because I'm not retarded.  I already know this stuff and want to do it, but I just don't have the energy.  So then I get chasternized by my husband with the same stuff.  I've told them that if they want me doing these things, then they need to stop putting all this junk in my body so I can feel well enough to do.

Dr. McGuirk was extremely annoying about this today.  I guess he doesn't like be questioned about his practices.  Well too bad, that is my job as a patient to advocate for myself.  I don't understand why they have to keep putting chemo into me when all my cells have been delpleted.  His response to that is that its only going to get worse before it gets better and I have to have a better attitude.  I told him that he was being condescending to me and treating me like a child.  He didn't like that.  Pretty much the only thing we could see eye to eye on was if I don't get out of bed, I'm going to die of a piss poor attitude while in the bed. 

I have asked the last 2 doctors to tell me what it means that it is going to get worse before it gets better.  I already felt like crap and am strarting to feel better.  If I have to go through that pain and suffereing again, I don't know if I want to do it.  I want the doctors to explain the purpose of methotrexate after the bone marrow transplant.  Methotrexate is another chemo drug that I have to get every other day.  My counts are at 0 where they want them, so I don't see the point of continueing to destroy my body from the inside out.

So Dr. McGuirk set up a consult with the physch department.  It was a resident the reviewed what was going on and then his attending came in.  Their solution is to put me on Seroquel.  Well I for sure am not having that because 1.  it is an antiphychotic, which I am not.  2.  it is a mood stabilizer.  Yes, I am in a bad mood, but I'm dealling with BONE MARROW FAILURE, so it is ok to be in a bad mood! 3.  it make you into a zombie - meaning if they thought that I wasn't getting out of bed enough now, I'd never get out of bed on Seroquel.  I am absolutely OFFENDED by these quacks that they think this is the best option for me.  So all in all I got into arguments with a resident, a Psychiatrist and my BMT doctor and have offending a handful of nurses..  All of which ended up with me just still being mad and wanting to go home.

I know this is not a pleasant post today, but there are going to be bad days.  I just want this to be over with and I just want to go home. 

Saturday, July 30, 2011

Day 2 and 3

It's Ryan.  AGAIN. 

Andrya had her two most difficult days yesterday and today (Friday and Saturday; days 2 and 3).  She can't keep any food down and her nausea has been unbearable for her.  She has been getting severe motion sickness, which is making it all the worse.  Her headaches are still here too, though not as bad as before. 

She has also been extra feisty.  For the last two days she hasn't gotten out of bed much, hasn't eaten hardly anything and wouldn't talk much either.  Getting her to shower has also been a fight.  To her credit, she did shower both today and yesterday, but only on her terms, only when she was ready.  She still feels like her nurses and myself are condescending to her when we're trying to get her up and about.  I guess I can't blame her for being in a bad mood though.  She's just falling into a bit of a depression and once there, she won't listen to us and argues everything. 

Andrya and I also have been trying to work with her nurses on managing her pain and nausea medications.  I think I figured it out today.  She was diagnosed the night we had Kellan with a migraine.  She lost her peripheral vision for a few hours that night and it really scared us.  That was when her doctors made the migraine diagnosis. 

Now, I don't know much about migraines, but I know they can cause deep head pains but also nausea sometimes too.  The nurses thought that maybe her pain meds were causing her nausea, and two days ago they had switched her medication that she could manually operate as needed from nausea meds to pain meds since the other day she was having such problems with headaches.  But then the nausea was intolerable the last two days and the headaches were lingering.  They said also they wouldn't give her tylenol, as I wrote about a couple days ago, since they were worried it would cover up a fever caused by infection, which could be deadly for her right now.  All we wanted was for her discomfort from both symptoms to be gone.

They had done a C/T scan of her head yesterday morning and it came back normal, so they said that they didn't know why she was having headaches.  They assumed it was the chemo running its course and that the pain would go away but said it should have by now.  That was when I thought of the migraines and that seemed to "turn the light on" for the nurse.  So I was then able to get the nurse to give Andrya tylenol, which is what she wanted all along for her headaches, and they reworked all her nausea and pain meds to what we requested, all this after I spoke with the nurse practitioner and mentioned migraines...and now both have seemed to really subside!  I'm pretty proud of myself, if I may say so. 

By this evening (Saturday) she was feeling much better.  Her headaches (now being treated as migraines) are much more tolerable as is her nausea.  She ate soup and held it down, and she even just now asked for and ate the peanut butter cups (peanut buttah cuuups!) I bought her last night.  She also got up tonight, showered, and also walked some laps around the ward for the first time in 3 days. 

Now if we can just solve her latest side effect of the chemo and get her off the toilet, if you catch my drift...

Thursday, July 28, 2011

Day 1

Hi, it's Ryan again.

Again, Andrya is not feeling well.  Today was the most difficult day for her as far as pain and emotions.  I don't think her pain was as bad as it was a few days back but I think emotionally she's just worn out and that is making the pain unbearable.  She's feeling like her doctors are not listening to her and she just wants her pain to be gone.  Headaches and allover aches like you feel when you have the flu are still bugging her.  She is somewhat feverish; mildly so all day.  Usually in the 99's.

She wants Tylenol for her pain but they won't give it to her because it masks a fever and if she gets a fever then they need to make sure they catch it because it means she may have an infection.  That may not seem like a big deal, but remember: she has no immune system right now and even the slightest little germ can potentially get out of control and kill her since she has no natural way of fighting it.  Fortunately they've been taking blood cultures to check for infection and tonight, mercifully, they finally gave her Tylenol.  Sweetheart is passed out right now.

Nausea reared its ugly head today too.  Lots of stomach cramping, and some vomiting too.  She didn't eat much, and what she did earlier this morning and afternoon she lost.  She finally got down some soup and held it down about 7pm.

But I think what made today one of the worst was depression.  I wouldn't say she's actually "depressed"; that may be too strong a word.  But she's definitely down in the dumps.  She wouldn't get up, wouldn't do her walking, didn't do her breathing machine (which helps fight pneumonia), and didn't shower.  And try as we could, neither the nurses (who are all wonderful, compassionate women) nor I could get her to do them.  You know Andrya: if she's decided she won't do it, then she WILL NOT DO IT.

Her head just isn't right right now, understandably.  She's overly sensitive right now and thinks we're yelling at her or chastising her for not showering.  This combined with thinking her needs aren't being met are making her combative in an attempt to make us listen to her.  She says she just wants her pain addressed, but I think what she either doesn't understand or won't accept is that this treatment is just painful.  She has to dig deep and find the strength, because this won't be easy.  Her nurse said the same thing (easy for us to say, right?) and I only tell her because I love her, but our girl Andrya just isn't having it, bless her heart.

Maybe tomorrow will be better.  We'll try again with her doctor to get him to change her pain management regimen, and maybe then we can get back to kicking this chemotherapy right in its ass!

Wednesday, July 27, 2011

Day 0: the first day of the rest of our lives...

Hi it's Ryan again.  Andrya wants me to say this before she falls asleep:

"Thank you everyone for all the thoughts, prayers and love sent our way.  We are blessed to have so many wonderful people in our lives.  Today I got my brother's stem cells/bone marrow transplant.  This morning I woke up petrified of the process.  I was so scared of pain, and what might happen, the long term side-effects, and I almost didn't do it.  But I stayed strong and did it anyway, knowing I had to do it because I have too much life left to live.  I didn't get much sleep last night because of fevers and it looks like it may be like that tonight too.  My worst pain is having a headache again and body aches and they're trying to control that with morphine and oxycodone; but that only helps minimally.  Pain coupled with extreme fatigue makes me feel like I have the worst pain in the world.  But I was able to get up, take a shower, and go for a walk here in the ward's hallway which I didn't think I'd get done.  I owe that to the motivation of my husband, who is keeping me strong through all of this.  I'm really tired now, so I'm signing off.  ...oh, and happy anniversary to my husband of nine years!"

Tuesday, July 26, 2011

Day -1, a pretty good day!

So, as the title suggests, today was a good day for Andrya, as we had hoped it would be. And it's Ryan again by the way...I think Andrya just likes that she can get me to do this for her.  :)

 She was feeling good and in very high spirits; the headaches from yesterday's dose of cytoxin were gone, as were the sore throats.  She only just in the last 30-45 minutes started feeling a bit feverish, and by feverish I mean that she feels joint aches and she's cold though it's 74 degrees in here.  But I just took her temperature and she has no fever.  Mentally she seems good too.  She was back to being her ornery self again. 

 There were no chemo doses to get today either, she's all done with that and now we wait for it to take effect, destroy her bone marrow, and hope the transplant grafts. 

Julie McPike showed up today and visited a while.  Her mom Donna showed up today too.  Andrya loves the company, so thanks for coming by. 

Tomorrow is a big day.  She gets her bone marrow transplant.  Logan, her brother and donor, comes here to the hospital at 7am to give the donation and she'll receive it later in the evening.  Tomorrow is also our 9 year anniversary. 

So here's to hoping that tomorrow is as good a day as today was. 

Monday, July 25, 2011

Day -3; Really rough day

It's Ryan again.  Andrya is once again not in any mood to write her blog tonight since she had a very difficult day.  She received her last dose of cytoxin today, thank god.  It's the cytoxin that has been really rough on her.  When she got her first dose of cytoxin yesterday it gave her a very sore throat and an incredibly bad headache.  Poor girl only wanted to sleep it off but the pain in between her eyes was so severe that she couldn't fall asleep. 

She cried a bit, but she was also really brave.  She still got up to do her walks, she still took a bath and brushed her teeth.  And though her spirits were low today, by the end of the day, she was able to put it all into proper perspective.  She said to me, "Well, these side effects should be gone by tomorrow.  And at least this is the last dose of my chemo, so if this is the worst of it...".  I'm wondering if this is the worst day of this whole process; we'll see.  That'd be a real blessing.  Though we're smart enough to know we're not out of the woods yet.  We're still not even to day 0. 

Today for pain, her nurses have given her morphine at 6, then oxycodone at 7, then morphine again at 8, and again just now at 10, and she's going to get oxycodone again at 11.  That should provide a bit of a glimpse into the pain she's in.  She told me a minute ago that she thinks she's comfortable enough now to fall asleep. 

Tomorrow she only gets ATG, which is to help decrease the chances of rejection of the transplant, and it has a tendency to make her really sleepy.  Right before closing her eyes she said that she thinks she'll be in better spirits tomorrow.  Atta girl. 

Sunday, July 24, 2011

Day -3

Hello everybody, this is Ryan today.  Andrya is really knocked out from all the...stuff that they're pumping into her.  From what I can recall, today she has had benedryl, chlonoprine, keppra, prednosone, mesna, and cytoxin.  I only know the first and last one.  Cytoxin is the 3rd of 3 chemo drugs, and today was her first dose of it.  She's also only on the last chemo drug today, the cytoxin, and tomorrow is her last day of chemo, but she gets two doses of it.  I think the cytoxin is the most severe of the drugs, and we even said last night that its name even sounds severe. 

Sorry, I know that was a bit convoluted; she was trying to dictate it to me and it came out in bits.  And that pretty much sums up the kind of day she had.  All the drugs kept her asleep all day.  She didn't walk as much or do her breathing machine, but she seemed to be in high spirits when she was awake.  Which is good, but the chemo seems to be setting in now.  She's been feeling lethargic; as she describes it, she feels "awful".  She's had a real bad headache all day, and it's gotten worse as the day has gone on.  Nausea has also been a real problem today and she has lost her appetite for the most part.  She also has a sore throat that is getting worse. 

Like I said though, despite all that she seems to have been in a good mood.  When she's been awake.  Anita, our sister in law, and her mother Bonnie came down and brought our niece and nephew Alisa and Isaiah.  Bonnie made Andrya a beautiful blanket similar to the one she also made for Kellan. 

Tomorrow is day -2, which is significant because her diet changes to a neutropenic one because they expect her immune system to start to significantly disappearing tomorrow as the chemo destroys her bone marrow.  And for those that don't remember, the transplant is on Wednesday, day 0. 

That's really it.  I hope she can fall asleep tonight.  As the night has worn on she's shown more and more side effects.  I could best describe it as taking care of someone that has a fever or the flu.  The nurse just came in to give her some morphine for her headache; hopefully she can get a break from the pain and pass out. 

Saturday, July 23, 2011

Day -4

Today was my last day of Busulfan chemo and my first day of rabbit ATG.  The rabbit ATG is more like an immunosuppresant rather than chemotherapy.  With that being said, you'd think that it would have less side effects, but it didn't.  I got flu-like symptoms, body aches, nausea, fever.  My fever never got higher than 99.3, but it has been a rough day.  I just got rid of a headache as well and my appetite is terrible. 

Logan and my mom came to visit today.  I'm really glad to see some people around here.  Its pretty boring, especially when Ryan leaves to go home and be with the baby. 

I just realized something today, that the day I actually get the bone marrow transplant is our 9th anniversary.  Hopefully everything works out and we will have double to celebrate on that day every year.

I'm really tired, so I am cutting this off short tonight.  Thanks again for keeping me and my family in your thoughts and prayers.  Please pray that tomorrow's dose of ATG and the 1st dose of Cytoxan doesn't completely wipe me out.

Friday, July 22, 2011

Kellan makes an appearance!

Ryan somehow managed to arrange me to see Kellan today.  It was nice, though he didn't seem to recognize me.  It must have been the blue gown, gloves and mask I had to wear.  It didn't feel right either.  He kept looking at grandma, grandpa and daddy, but not me.  I think that made it harder on me. I miss him terribly and I hate that I can't put him to bed, change his clothes, snuggle him while he naps.  But the short time I got to spend with him was wonderful. 

I got platelets this morning, as expected.  My counts are doing the exact same as they were prior to getting chemo.  I told the doctor today that his chemo wasn't working and there wasn't a need for me to be here.  He assured me that it was working and that I would start feeling effects in about a week.  Anyway, I feel like the healthiest person in this hospital and they are keeping me cooped up here like I'm knocking on death's doorstep.  Feeling like this got me pretty down today.  All I wanted to do was sleep.  I'm glad Ryan had stuff to do today so that he didn't have to see me being miserable.  I just want to go home and now I don't even feel like I have a home.  It was a really bad day and then Ryan came back and cheered me up.  I am currently on my 2nd to last Busulfan chemo treatment and will start the rabbit ATG tomorrow.

Kellan had his 4 month visit today.  The doctor says he is doing great!  He weighs 13 lbs 4 oz and is 23.5 in.  His head is 18 in.  I don't know if that is right, seems kind of big considering it was 14 in at birth.  Ryan said he cried a bit for his shots, but then was ok after Ryan rubbed his legs a bit.  I don't miss watching him get shots, just wish I could be there to console him.

I started studying for my GRE.  There is another girl going to be checking into the unit in a week or 2 that wants to be a doctor.  The night nurse that I've had the past 2 nights thinks we should get together considering we have similar goals after transplant. 

I have had several requests for my address:

Andrya DeGhelder
KU Med Center
3901 Rainbow Blvd.
Room 4110
Kansas City, KS  66103

I can't receive fresh fruit, veggies or flowers.

The thoughts and prayers must be working because I still feel really good.  Keep them coming!  God bless Anita for taking care of Kellan today along with her own kids.  I love the artwork from Alisa and Isaiah.  They are hanging on my wall and door.

Thursday, July 21, 2011

One more day down

It was a rough day today and for no particular reason.  We are at Day -6 to the transplant and I am getting my 11th dose of chemo right now.  I'm feeling pretty lousy, but not because of the chemo.  I just want to go home and be with my baby.  I don't feel sick, so that makes it even worse. 

They make us walk up and down the hallway.  A complete round trip is 300 feet, so it is very small area.  Today we taped up pictures of Kellan all over the hallways so that I can see him when I am out "getting my exercise."  It cheered me up a little, but it isn't the same as seeing him in person.  I also got to missing my cats back home.  I just feel blockaded from the world and stuck in a 100 square foot box. 

Ryan went and got me some Chipotle.  I don't think he was suppose to, but the nurse said it was ok.  In the meantime, the car broke down.  Chipotle is only 2 blocks away, so he didn't have to go far.

My brother checks in on Saturday, so my mom is coming with him.  That will be nice to have some different visitors. 

Thanks for everyone's prayers, thoughts and help!  We couldn't do it without our wonderful family and friends!

Wednesday, July 20, 2011

Is this really real?

Day 2 of chemo was exactly like Day 1.  Not much to report.  Its funny to think that you have this awful chemical running through your body killing your cells, yet you don't feel anything.  I have a bit of nausea, but nothing serious, could just be the change in my diet...you know, hospital food :)

Ryan went home and played with the baby this morning.  He sent me videos.  Kellan was talking and giggling, it made me smile.  Ryan is here with me right now and is going to stay with me until I fall asleep..

Something interesting did happen to my blood counts.  They gave me a unit of RBCs yesterday.  I didn't feel like I needed them.  My hgb was 7.6 on Monday and then 6.9 yesterday so they gave me blood.  My platelets were 21 on Monday and 15 yesterday.  Today....they were 16----I didn't have a platelet transfusion.  Hmmmmm, interesting that they stopped changing.  Could be nothing.  usually they decrease by 5-10 per day.  Now that I think about it, they gave me "B" platelets on Friday which means my counts don't go up as high and decrease faster.  Its probably just a anomaly.

Thank you Jenny for babysitting Kellan and giving our in-laws a little bit of a break!  I'm super blessed to have an awesome family!

Tuesday, July 19, 2011

Day 1 under our belt

Besides having to get up at the butt crack of dawn, today hasn't been so bad!   I'm currently on my 3rd dose of chemo, Busulfan.  I don't feel any side effects yet, buy my pee sure does smell funny, kind of like when you eat asparagus!

I'm not going to lie, it was really rough leaving Kellan this morning.  I at least got to feed him before we left.  I know he is in good hands with Grandma Susie and Grandpa Joe.  And if not Aunt Nita and Aunt Jenny are standing by :)

Other than sleeping most of the day, we haven't done much.  Ryan has been a trooper.  We got a bigger room, so that much more to decorate!  I can't wait to have my walls full of pictures and cards and whatever else people want to send me to cheer me up!

The nurses are really nice and the bed is pretty comfortable.  I got pink blanket with me, so I am happy!  The food isn't too bad so far either.  I order "room service" when I am ready to eat and they bring it up so it isn't cold.  I like that a whole lot better, but it was weird at first.

So I am in room 4110.  That is on the 4th floor of the hospital in the BMT ward.  There are special precautions that have to be taken to enter the ward.  Everyone has to have their stuff wiped down with an antiseptic wipe (so ladies, I would not bring your LV or Coach bags with you).  Hand washing is essential and you can't use my bathroom.  Once you get used to it, it isn't so bad.  But if you want to visit me, then room 4110 is it.  The visiting hours are 8 to 8 I believe, but they are pretty flexible.  You can call ahead of time to make sure its ok.  My cell is 858-531-6511 and my room number is 913-588-4110.

So the main rules are:  no food, no flowers, no drinks for me.  If you are feeling sick, have a cough, runny nose, sore throat you can't come.  This is all to help protect my fragile immune system.  You may be asked to wear a gown and mask when you visit.

Now that I've scared you, I'd really appreciate visitors!  There is a limit of 2 and no children under the age of 12.  Can't wait to see everyone!

Monday, July 18, 2011


It is 12:05 AM, which means in 6 hours, I will be checking into the hospital to start my treatment.

We had another viist with the doctor today to discuss my plan.  What he said made a whole lot more sense.  So, I had, and currently have Aplastic Anemia.  It has progressed into MDS and another condition called Paroxymal Nocturnal Hemoglobinuria (PNH).  All three are bone marrow failure diseases.  Because I have a combination of all 3, the treatment regimen is a little more difficult.  I will be receiving treatment for MDS and AA.  The treatments kind of conflict with each other.  The treatment for MDS will make me get a little bit of Graft Versus Host Disease (GVHD).  This is bad because the we don't want any GVHD for the AA.  So I have a higher risk (about 20% chance) of developing severe, chronic GVHD.  That will mean I will never work again and pretty much never leave the house again.  That is going to suck if that happens. 

So I feel better after the visit knowing that there wasn't a "wrong diagnosis."  I am more scared now than ever though.   This is real, this is happening now.  In 9 hours, I will start chemotherapy. 

I'm so happy and relieved that I have my husband by my side.  I may even let him watch the Royals' games while he sits with me :)  I just hope my baby will know me when I get out.  My niece Alisa made me a hat and a card today.  It was just adorable!  I can't wait to wear the hat and take a picture for her.  I'm not scared about losing my hair.  I am kind of excited about it.  Everyone tells me that it grows back different after chemo.  Maybe we should start a poll to see how people will think that it will grow back!

The pre-medicine they had me take today made me feel drunk.  The medicine was 2 anti-seizure medications because the chemo that I start tomorrow will make me have seizures possibly.  Thankfully, the 2nd dose wasn't as bad as the first.  So if there is stuff in this post that doesn't make sense, I blame it on Klonopin and Keppra :)

Please continue to keep me and my family in your thoughts and prayers.  We really, truly appreciate it! 

My husband and family will update the blog when I don't feel like it.  So please come back and keep checking it.  I have had a lot of positive response from it and I derive strength from telling my story. 

Saturday, July 16, 2011

New News

Well everyone, I survived Aplastic Anemia, but I now have Myelodysplastic Syndrome (MDS).  We found this out yesterday afternoon and it came as quite a shock.  There isn't a whole lot of difference between the 2 conditions.  They are both bone marrow failure conditions, both require chemo and a bone marrow transplant.  The difference between the 2 is that my marrow is making the cells that it needs to, but they do not mature correctly.  Before they thought that my marrow wasn't making enough cells.

So this meant that my admission to the hospital was postponed.  I am now going in on Tuesday at 6:00 AM to start chemo at 9:00 AM.  I will be on Busulfan and Cytoxan.  The Busulfan will cause seizures, so they have me beginning anti-seizure medication before I even go in.  The doses of these will be higher than they were with the AA.  Some good news is that my brother can now donate his stem cells through his blood and not through a bone marrow harvest (from the hip bone).  It is much less invasive for him.

I am very conflicted with this new diagnosis.  I have a ton of questions for the doctors.  The AA made sense because it happened during pregnancy, which is one of the causes of it.  Pregnancy does not cause MDS.  The MDS is caused by a chromosomal defect, which I didn't have when they ran the chromosome test when I was diagnosed with AA.  MDS usually occurs in 70 year old men, I am a 32 year old female.  The survival rate is less as well.  I now have a 5 year survival rate of 50-60%.  The good news is that I have a lot of the factors that make the rate toward the higher end of that range.

I am very excited that my husband made it back to Missouri safely and he will be with me for the next month.  The doctors don't expect me to be ready to go anywhere from Kansas City for at least 6 months, so I guess I'm here for awhile. 

My sister-in-law, Anita, is trying to set up a charity account that you can donate to us.  If you want to donate and want it as a tax deduction, I'd suggest waiting until that is set up.  Thank you so much for helping with that Anita!

I appreciate all the thoughts and prayers coming this way. 

I need a new title for my blog now...I'm taking suggestions :)

Friday, July 15, 2011


I know I need to post. I have new news. More coming tomorrow I promise.

Wednesday, July 13, 2011

ER Visit

I got to hang with my niece Amber today! I just love her to pieces and wish I could see her more often. Now I'm at the ER because I was careless and cut my finger. The triage nurse does not seem to care that I don't have any platelets to stop the bleeding and the dr on call at the BMT clinic insisted on me going to the ER even though he had the wrong patient when he spoke to me. This dr started telling me that the ER doctor wanted to discharge me on antibiotics. I had to interrupt him to tell him I cut my finger and needed to know if he thought I should go to the ER. So now we have been here for an hour and I will probably have to pass out from no blood before I get seen. The longer I wait the more of a waste of time this is.

Monday, July 11, 2011

Beginning of the week of relief

I wasn't suppose to have any appointments this week, which I was thankful for, so I can spend every possible second with my son.  I can't believe that in a few days, I won't be able to see him for a month!  Thinking about it makes my eyes well up with tears.  I keep telling myself, that a month is a short amount of time considering all the time we will have in the future if I get this transplant. 

I got a call around noon requesting that I come in for more labs :(  Then I got another call asking if I could get my ob/gyn appointment done today.  So I did both.  The admin staff at the ob/gyn clinic were AWFUL to me.  Once I said something to them about it, they started being more professional.  I guess people that work in admin at ob/gyn offices have to take a class on rudeness because they were like that at Tripler too.  Anyway, I'm glad I stood up for myself and said something. 

The labs I had done were to test for Fanconi's anemia.  I have no clue why they are testing this, because I don't have any of the physical symptoms of it, like 3 thumbs, deformed skeletal structures, mental retardation, etc.  Oh well, its just a blood test.  I asked them to do a CBC as well, they don't think I need any blood at this time even though I get lightheaded when I stand and am very fatigued. 

So, tomorrow, I should NOT have any appointments!  I'm excited!  I can spend all day with Kellan.  I think we want to go shopping.  He needs some books and diapers and bottles and Babies R Us is having a sale. 

I want to thank my in-laws for being so wonderful these past 2 weeks!  I don't know what I would do without them.  I treated them to some frozen custard concretes today.

Saturday, July 9, 2011

First Break from the doctor's office....or so I thought

Ahhh, Saturday!  Well I thought that today would be a good day, without doctors and transfusions and tests...but I was wrong.  I woke up with a really bad headache today.  The doctor's don't want me taking tylenol, ibuprofen or aleve because it will mask a fever.  I ended up taking some tylenol anyway.  It didn't really help.  I suffered until about 6:00 tonight before it finally went away.  I'm glad my in-laws were here to take care of Kellan while I tried to rest and "sleep off" the headache.  This is the 2nd one in a week.  I never really have had headaches, but the day I had Kellan, I lost my peripheral vision and they diagnosed it as a migraine.  I have never really been one to believe in migraines, specifically because I used to work with 2 ladies that always left work because of migraines.  I always thought they were faking it and since then have defined a migraine as a woman's excuse to get out of work.  I think that I had a migraine today.  I know that they are legitimate in some people, but now I think I can understand a little better.  I just could not function at all today.

But that wasn't the reason why I ended up going to the hospital.  I took a shower and tried covering up my catheter, but it didn't work.  It got wet and I had to go to the hospital to get it changed.  I'm really glad that the doctor on call didn't get mad at me for getting it wet.  I really did try.  They gave me some stuff to use instead of saran wrap, hopefully that will work better.  My in-laws are going to get a different shower head, one that you can take off as use as a sprayer. 

I'm glad I got to spend some time with Kellan today.  He seemed happy about it too.  Everytime I held him, he seemed like he just wanted to cuddle.  It made my heart melt.   Its almost like he knows that something is going on and wants to be with his mommy.

I'm excited for Ryan to come on Thursday.  We are going to go out for one last outing before I get admitted on Saturday.  If anyone wants to come, let me know.

Friday, July 8, 2011

Short Day

Today was a short day.  I had labs, met with a Nurse Practitioner and had a consultation with the radiation oncologist.  One bit of good news is that my WBC seems to be trending up instead of down! My ANC (absolute neutrophil count) was over 1400 today!  Yesterday is was just over 1200 and Tuesday it was around 790.  That is all without taking my neupogen shots to stimulate my WBC.  Preliminary results have come back from my biopsy.  I didn't get to talk to the coordinator, but she told my mother-in-law that they were looking about the same as the biopsy we had done in December. 

The radiation isn't going to be as bad as I thought.  It is going to be low dose radiation and the side effects are going to be the same or less as the chemo. 

I am still in a lot of pain from my procedure from yesterday.  The NP gave me a prescription for oxycodone.  It kind of helps.  It mostly makes me sleepy. 

My spirits are a little higher today because I got to spend more time with my son.  We got home from my appointments at 1:30.  Kellan and I napped from then until 5.  Then my in-laws, Kellan and I went to dinner at the Olive Garden. 

I am looking forward to next week, where I only have appointments on Friday.  I will most likely have to go in earlier for a blood transfusion, but that can be anytime.  A week of rest before starting chemo on next Saturday!  Hopefully I can get some facetime with some of my friends in KC before Saturday.

Thursday, July 7, 2011


Today I got a Trifusion Catheter put in and my PICC line take out.  Its like a permanant IV with 3 hookups for my chemo and immunosuppressive therapy.  I had to get platelets first to make sure my counts were up over 50.  I felt drugged all day.  They gave me benadryl and a steroid for the platelet transfusion.  About the time that finally wore off, they gave me Versed and Fentanyl for the catheter placement.  These are 2 sedating medications.  

When we got home after the procedure, I was still feeling tired, so I napped for about 3 hours.  I woke up in a lot of pain.  Mostly in my clavicle area and right arm.  It still hurts pretty bad.  I couldn't hold Kellan for very long, so I hardly got to see or be with him today.  I feel so sad and that this is just a taste of what it is going to be like once I get admitted to the hospital when I won't get to hold him at all.  I am so thankful that Ryan's family is available to take care of him.  I don't know what I would do without them.

Tomorrow is my first doctor's appointment after all the tests.  Please keep me in your thoughts and prayers.  I hope that everything comes back ok so that there isn't a delay in getting the transplant.  I did get some good news from my CBC today.  My absolute neutrophil count went up despite not taking any of my Neupogen (the white blood cell stimulator).  On Tuesday it was 790 and today it was 1270.  They would like for it to be over 2000, but 1270 is good enough for me.  I'm sure that this is going to be discussed tomorrow.  My hemoglobin went up from 6.3 to 7.1 but went back down to 6.7 after the transfusion.  Those are still pretty low considering I got a RBC transfusion on Tuesday. 

Ryan got some stuff accomplished today too.  We found out earlier this week that we have to do an "Early Returns" for me.  The only thing I really know about this is that it means the military is going to allow him to ship some of our household goods home, including the crib and my car.  I think that is going to help us out a lot!  He talked to the Chaplain at the command today because he is having trouble with his XO, the 2nd in command at his command.  We understand that it is the XO's job to push his officers, but he is just not being compassionate about our situation at all.  It is really frustrating for both me and Ryan because we have given so much to the military and the one time we need them on our side, they are giving us a hard time. 

I told my sister in law last night that I needed to start opening up more about my feelings in these blogs because it will help me to deal with them.  I want everyone to know that I am trying to be really strong throughout this, not just for me, but for my husband and baby as well.  But I am really, really, really scared.  I get angered really easily when things start to get difficult.  So if I lash out at anyone, I apologize in advance, it is not you I am angry at, it is my illness.  I have accepted the fact that this isn't just a "condition" it is an illness.  I don't want to burden anyone, but I know I have to have help.  If I seem reluctant to take your help, please feel free to make me take your help.  I want it more than anything.  I also don't want to wear everyone down before this even gets started. 

Finally, I haven't gotten much of a response for getting phone numbers for people.  If you aren't up to speed, I lost my phone on Monday and had to get a new one with a new number.  It is in my profile on Facebook.  You can email me at andrya79@hotmail.com if you want mine or want to give me yours.