Up-date

     I've run into a few friends that told me I needed and up-date.  So far today I am at day 30, that's how the Stem Cell program works they go by days.  I came home 2 weeks ago, I got to exchange my Hospital Christmas wall for my beautiful Christmas Tree and home with the people that I love.  We had a pretty quite Christmas until evening when the kids all came over,  Everyone was healthy, that's the key word around here.  It was wonderful to be with everyone!!!  

     I have been going everyday up to McKay Dee lab/infusion therapy  to have my blood drawn to check mostly levels for my platelets and my WBC.  Then most days I go back to McKay Dee to receive a unit of platelets.  There have been a day here and there that my levels have been good enough to skip a day.

     Now there is a problem regarding the low platelets.  I should be producing them on my own and my level should be much higher.  So Friday, the 30th I had to have a bone marrow biopsy, my 4th, to see if they can figure out why I'm not producing them yet.  We have a Dr. appt. next Friday for the results.  But a great event happens tomorrow, I get to skip a day for blood draw,  that hasn't happened sense I came home. I'm so happy.  I get to sleep in!!!!!

     I'm still tired. some days are better than others.  I still have the crappy nausea, worst in the morning, so I'm doing the pregnancy trick of a cracker in the morning and then a nausea pill.  I do get frustrated about still being so tired and exhausted so easily, and just not feeling good,  Still wearing a mask everywhere I go and today was the second time I've gone into a store.  I'm picky about where I will go, needs to small with not a lot of people.

     My PA said I need to add a week to my "sitting" arrangement because of the low platelets, low WBC and I still have a central IV line.  So all in all I'm not quit where I should be, but once they figure out why, they will fix it, or so they say, but that's my prayer.

     I have so appreciated everyone that has helped with being my sitter and the ward sisters that brought in meals and all the prayers and words of support and love. My family is amazing, my husband is my rock, he never complains, he works from home when needed, he drives where ever we. me, needs to go.  I have so many blessing and things to be grateful for.

     Wednesday the 14th my Dr. said I could  go home on Friday, today, if all my numbers stay up.  So far my WBC, RBC, platelets, nutrophils are all holding their own. My bone marrow has kicked in and is working.

     Well I'm not going home today!  Yesterday morning I spiked a fever,  so again they did blood cultures, changed my antibiotics and gave more blood products.  Then last night at 6:20 pm my nose started to spontaneously bleed, a running constant bleed.  I have to admit it scared me and Kim and I both said that if this were to happen at home, we would both be freaked out.  It didn't matter what we tried it didn't stop. The on call PA got called in and after checking the bleed he called the on call  ENT and got his suggestion.  They couldn't coterize due to the fact I've been on blood thinners so it was recommended to just hard pack it to stop the bleeder.

     As he was putting the packing in, that little bit of pressure, made it stop.  I have never had a bloody nose like that or anything even close before.  But that packing was going to be miserable, he said it would of had to stay in 3 days and the pressure I did feel was gagging.

     I've been blessed in so many ways, having the fever come and go and even though it took 4 hrs to stop the nose bleed, things keep righting themselves.

     Kim stayed all evening with me until he knew I was doing okay, I felt bad he had to stay so late, but I appreciated his support and being with me.

     No go-home date has been given yet, maybe I'll hear something today.  

     

Number game

Day 18/11,

      My mouth sores, I only had a few really bad ones, are healing up so now I can swallow with out pulling so many painful faces.  And in my professional opion once a side effect has come and now healing, that side effect shouldn't be allowed to come again.  One time only!

     Today and Yesterday I received more platlets and blood.  #12 units  for plasma and #5 Units for the blood.  But the good new is I'm still right on track.  Today I had 300 neutrophiles, which is from zero,  which means my marrow is starting to, try really hard to start working!!!!!!  So until then I will keep receiving the things I need the artificial way. 

     With all the fluid everyday, with the IV medications, and drinking 2L, my poor feet,ankles, legs and today my knees have some bad edema.  I have it in the morning too and it worsens as the day goes on, so no skinny ankles anymore.  

     It is getting harder and harder to remember 3 min. ago, or I forget the ending to a story, or why I was telling it in the first place.  I've heard about the Chemo Brain for the last 4 years, and I totally believed those who talk about it.  Now I'm part of the group who has chemo brain. Once today it  felt like my thought went through a trap door, just gone. It does get better the further  out from chemo your are.  I am kind of laughing as I write this, there is no such real medical diagnosis of chemo brain.  But it is still real none the less!  I am glad I have always been a list maker, so I have to write it down as soon as it comes to me, I'm really doing Okay, I have not yet gone CRAZY, could be soon, but not today.

     My eating and drinking fluids is still a problem.  I had Kim bring in one of my camel-backs, that keeps things colder and also propel water flavor, so that really has helped.  Eating, there is still some brain stomach connection that just isn't happening, I do have some nausea, but not a lot, so maybe it's like my memory problem, the desire to eat went out a trap door. 

    Being here you don't get to socialize much, if someone is walking in the hall I say HI, but I did get to know one gentleman and his wife,  They are both so sweet and so now when we see each other we visit and give an update.  He and I started the same day, different cancers, somewhat the same treatment.  But his wife says he is struggle too, to get out and walk, to eat much, and just general lethargy.  I don't want anyone to go through this, but when you talk to someone who understands it is comforting, and feels supportive.  We all want each other well and able to tolerate this treatment.

     Pictures in blogs make it for a fun read, but mine is keeping myself updated as this process goes along.  I have so many things to be grateful for, that I am on track, PT called me her only compliant pt. so far, that I have family and friends sending their love, prayers and support, and such smart people who are caring for me, which makes me feel confident about my care. 

    

       

            

Hang'en

     Not much for today.  I was able to get 2, 3hr sleep stretches last night which is good.  So why am I so tired today? I told myself I was allowed to nap today, and I have.  For some reason too I can't make myself go walking.  That's bad!!  I did get ready for the day, shower and real clothes, no make-up today.
     I started getting the daily Nupogen injections yesterday.  So at some point, soon, I should start to build my marrow and immune system up, but I did get more Platelets (#8) today.
     My Dr. told me today I was right on track and not to get discouraged with all the side symptoms. I'm blessed enough to be able to eat, I never want to eat, and drink water, which I have a hard time with too,  walk around and starting to concentrate on activities a little more.  So there is progress just slow as promised.
       Yesterday afternoon the 8-East floor had a mini Christmas program with a singing group called Lower Lights.  The staff had put chairs for everyone around the nurses desk, and the group performed about 5 Christmas songs.  I only counted 8 patients who came out.  Later I made some comment about how only a few pt's came and my nurse said "there are a number of pt's that hardly ever leave their room and / or they feel to sick to come out".  I'm grateful for all my blessings and for where I stand  in this process.  Even from when I started this post about 5 hrs. ago, things have changed in my body.  just more to get medication assistance to get me to LALA land!

Roller coasters

     Everyone has heard "Life is like a roller coaster, with ups and downs".  So here is my question.  Which is good, the up -ward motion, the falling motion or when it comes to a complete HALT, which is the only part of the ride I enjoy!

     My chemo/stem cell recovery has had ups and down.  But I don't know which is which.  So its day 8/5, and I have been so grateful to not have had mouth sores, well today I got a few, probably more to come.  TMI, but the diarrhea has started now also.  I've been able to eat, still just small amounts, but I have never thrown up, that's good news.  Drinking is a big problem now too, it's just that my mouth has a weird taste in it, food hides the taste, but water makes it worse.

      I am grateful for Modern Medicine.  Not just for what I am receiving, but that our babies can have a simple ear infection treated.  I'm happy that the 2/3, from the host of heaven, who choose to come to earth included some very smart/genus people.  The team of Doctors I work with, which work with all the transplant cancer pt's, all are so smart and kind.  I've meet 4 now and I not sure how many there are, but they are all caring, only want whats best for me, they make recommendations on how to help with every symptom.  

     I would have loved to have missed this large bump-in-the-road illness, but life doesn't work that way.  I have meet so many wonderful medical staff, here and more so at my Ogden Clinc.  I have know really smart Doctors and RN's who are so spot-on in making recommendations in trying to  help everyone to tolerate what's happening in our life.

     I know the Lord has a plan and he has some amazing people working hard, here on earth, to advance our lives both in quality and love.  

     

"Eating is HARD"!

First off...........

Stella, Burton, Benson, Hyrum, Margot, Milo, Kate, Charlotte!

These adorable kids at another Santa Photo shoot.  The girls all work so hard to make their schedules work and to put the kids in such cute PJ's.  I get so many compliments on the 4 years series of pictures I have in my office of these adorable grand kids, and what a way to see their progression and so many changes.

     So eating really shouldn't be such an ordeal, should it.  Nausea and abdominal  pain seem to go hand in hand around here.  I'm also experiencing anxiety.  Probably from this little room, difficulty concentrating, nausea, trying to drink enough everyday so I don't have to have IV fluids with a little extra Nutrition in them run at night.  I have only dropped a few lbs, which I hear is OK.

     I have received 4 units of Platelets so far, I can only imagine that my Stem Cells haven't been able to rejuvenate yet and start making more in my marrow, I've also received 1 unit PRBC.  Then lots of other medications, to help with sleep, anxiety, stomach, appetite stimulant.  You name the problem they have a remedy and I'm told over and over again to tell them EVERYTHING I'm feeling.

     Sleeping in a place like this is difficult too.  There are aways lights on somewhere, hall noises (not bad), V/S needing to checked, medication at all hours and lab  being drawn @4am.  Then of course my own potty breaks and general body aches and pains, no one likes hospital beds, even with your own pillow!

     I am not writing this to share my complaints with anyone or wanting of pity or sorrow, but for me to remember what this process has been like.  I  do need to write down what medications have worked and what has not.  
   
     I can for sure that even though it's only day 6/3 (6 for chemo days and 3 for Stem Cell day, which they call my birthday).  I have been blessed to have wonderful family and friend support, I may often be slow to respond, due to laziness/lethargy at time, but everyone has been amazing.  I have been blessed to up until today not have any mouth sores.  I've feared getting them, and heard about people with them,  that I am so grateful.  My Dr., who I really like, said I'm not out of the woods yet, but I can still be grateful.

      I have so much to be thankful for, go back and look at the picture,  That even though I've had 2, just 2, little tearful moments I know I am being watched over as is my wonderful family.  The Lord knows what he doing, it's just hard to wait and figure it our for ourselves.

 
   

      

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Finally here!

     I don't know why keeping this updated is so hard, but it is.

     So on Oct 10th I was admitted again for the 4 days of straight chemo.  I didn't have to worry about hair loss, because it was gone.  I just knew this time that I would hit rock bottom at so,e point.  But this time the Nupogen (immune builder) was started earlier.  But it still happened,  my WBC went to 0.6 instead of 0.1, but while I was getting fluid and having my labs drawn at the clinic Lisa RN came and told me my labs and I just started crying and said please don't let Dr. J admit me again, I just can't go back to the hospital.  I felt bad because I took her so off guard, and she went and talked with the Dr. and told him what I said, so if I would go into the clinic everyday and get my shots and blood infusions I could stay home, and of-course I said yes.  I went through the weakness again and nausea and diarrhea but I was home, which didn't make Kim feel good, he doesn't like being in charge like that.  Plus that same week he had 2 funerals in the ward so I needed to rely on friends and kids, but I got through it and back to work within 3 weeks.

      Once back to work I was told by me Dr. that I was in remission!  That was very confusing to hear.  But it only really meant that I was in the perfect position to now have the Stem Cell performed.  He had been talking with the team at LDS hospital and they agreed.  So appts. were being set up for me to be seen again and get the process started.  I had another bone marrow biopsy and was told again I was in remission, so lets go!!!!!

     So here I am.  I was admitted on Nov. 29th.  I have received my 2 lethal doses of chemo, lethal if not countered with my stem cells, antibiotics and immune builders,  Soon my bone marrow will stop producing RBC, WBC's and all the normal infection fighting antigens that is produced there.

     I will feel the chemo affects on day 4-6, but being here they will treat with medications to help get through the rough times and try to keep me eating and hydrated, and will give infusions as needed of blood and platelets.
 
    But between the last round of chemo and now we have had lots of love and family fun and support and kindness from lots of family and friends.

Pumpkin carving, which I wasn't able to attend, but I'm so glad they did it anyway, hosted at Melanie's home.

Jodi's Pirate family for Halloween!

 A first for mom Melanie, Kate and her friend cut each others hair, she now has an adorable little bob cut.

 A few letters to Santa.

     Celebrated Hyrum's #8 and Kate's early #6 birthdays.
Margot learning to sit up.

Helping the Flints "making Christmas" by helping put up thier tree,  Benson helped by taking off each ornament we put on and trying to eat them.

Thanksgiving at Karen's, we were a smaller group then normal but we had a nice time and she did a great job.

We celebrated Burton's #1 birthday at his grandma Sue's home.  It was fun to see him get excited about new toys but not get much play time, until the next morning,  because he has too many bigger cousins who insisted on trying them out first.

Our First Baptism.  Hyrum was so handsome and sweet.  He had lots of family and friends attend.  I felt very blessed that they could do it a Saturday early so that I could attend and I was privileged to be asked to give the Holy Ghost talk.  I have a strong testimony of the Holy Ghost and that if we stay in tuned we can hear and receive it's promptings every day, in every part of our lives, not just choosing right from wrong, but having comfort in the choices we have made and the struggles we might be going through.

We went to Temple Square with some of the family and as we were walking through I said to Kim "I wonder when I will feel this good again and have this kind of energy"  I know it will be awhile, but I know I am blessed even though I feel very scared.  Kim and the boys gave me a very sweet blessing before being admitted and I will continue to ask for the Lords help to be positive through out this process.  I know I am loved and watched over by a caring Father in Heaven.

And I got my tree up.