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.

 

Tears of joy

     9/16/2016, went for regular MD appt. after my big blood draw!  Usually I've looked at my lab and have a feel for what's coming, but I didn't this time!  As he read off the ones I basically understand, the beta-light chains and a few others, he hit on the important ones and they were fabulous.  If not normal they are closer than we ever seen them.  I just suddenly had tears of joy.  Since December this hasn't happened!  I guess I'm and old fashioned gal who needed old fashioned treatment!!
     So in about 3 weeks more blood draws and those results will determine when I do this treatment again, the 4-6 day in hospital 24/7 treatment.  I'll know more of what to expect, but I'm not sure it will be any easier.
      On a side note, Tuesday the 14th my hair was coming out in large clumps. So that night Jodi was here and help me wash and comb out as much as we could, pretty sad and lots of tears, I was very greatfull to have her here and being so responsible and helping me get through it.  then Wednesday the 15th my sweet husband finished the deed with the electric hair trimmer/razor.  He did a good job, so I am officially a 5:00 shadow head until the tiny ends fall out🙄.  I'm now practicing my wigs, hats, night caps, little scalp covers and a variety of other goodies, so far my favorite is hats.
       I know I'm loved with or without hair, by all the people I love!!!

This I wasn't expecting

     Last entry, after chemo, I went home on Sunday the 4th.  Not feeling the best, but I had just had killer cell chemo.  My eating and diarrhea continued to be a problem and even got worse. Until Wednesday the 8th, when I needed help to get out of bed, dressed and make decisions.  Kim really just wanted me to go to the ER for fluids and I knew I needed something soon, but I waited the few hours until my Dr. Office opened sand I called them and they said tocome get fluids.
     They started fluids and drew blood, and after an hour I was told Dr. Johnson was admitting me back to the hospital.💉, my blood work was totall mess.  I had become neutropic (I had no WBC, or platelets,), probably and infection, due to fevers, dehydration, due to diarrhea an not eating or drinking enough.  Kim was at a meeting he couldn't leave, so I called Jodi, and she came and got me and took me over.
     First thing an RN and then DR.J said was, this was expected, just not this quickly!  I'm pretty sure we were not told about this little side effect, unless it was limped in with " I would be sick after chemo".  And probably I should have know something, with just the nature of chemo.  But at home I really thought I was just dehydrated!
   

Dr.s are usually right

     So what I said before that I might just enjoy naps and meals........so wrong!  My 4 days turned into 6 due to lots of IV problems and then at the end my potassium and blood count all dropped , chemo-effects, so I had a few extra infusions.  By day 4 I knew I'd had chemotherapy.  Everything I've received in the past has had side- effects, with stomach/ bowel issues, tired, metal mouth, some nausea, but this stuff had all that at a new high.  Still blessed to have no vomiting!!!!! Just thought I wanted to.

      Kim had to reminded me that my Dr. said I would be sick, so sick I am.  But it's getting better, I think, eating is still a hard issue, with weight loss, I'm hungry but as soon as I start to eat,my stomach wants to stop!!! Who thought I'd ever have wt. loss as a problem!   Just supper tired, and weak now.  Went for a short walk with Kim tonight, and I think we went 1house to far, we only went 18 houses😝. But my strength will come back too.  I took this week off to see how the recovery would go, so I'll know for next time.

      I could repeat this in as early as 4 weeks to 8 weeks.  It will depend on my labs and what the LDS team wants to do.  

      I still have hair, I have no idea when that will start to fall out.  I'm ready though, I really love my new short cut, so I'm going to have one of my wigs cut this way, so when it does happen I'm ready.   

      I am so blessed, my family is amazing, my husband is a fabulous care giver, task doer, take-out king, Diet Coke runner (not my normal habit, but it helps my stomach 👍, I've called him my "slave" but he is so happy and willing to go get my phone, get me a blanket, fix my meals, always asking what I need.  He doesn't get frustrated or angry, he doesn't ignore or become impatient, he is truly a rock I don't want to be without!!!  I love him so much❤️!  He doesn't ever read this, so if you see him thank him for being so loving and good to me!!

       

Hospital stay

     So the hospital stay started early Monday morning.  But not until about 4 pm did the chemo drugs actually get started.  Just a quick note, I've only experienced nausea, no vomiting or dry heaving. I've been told it's aclumalative but I'll keep praying for the lesser of the symptoms.  I'm sure a lot is due to the great number of fasting and prayers by so many friends and family members in my behalf.  I've noticed no hair loss which I wasn't worried about this week, maybe it will start sometime next week.  I got my hair cut short and I really like it, my family and I wish I'd done it earlier so I could enjoy it longer!!  I'll keep this posted as I can.  After I'm release Friday I start a routine schedule of different drugs on different days then as he keeps looking as blood work then they see if I do this again in 8 weeks or might be ready for stem cell.  Time will tell😊.
     Love and are greatfull for so many family and friends, love and support, and I'll never be able to thank all of you properly😘

It's been awhile, but very eventful!

      First off-Margot is doing very well with her thyroid issue.  She gets her blood drawn and so far just little adjustments have had to be made to her medication dosage!!!! But this last time she was in perfect normal range.

      I wish I could tend and play with them like I did the first 3.  Tired/Fatigue are my life!!If you ask 'how are you feeling or doing', that's what you'll  hear.  I watch families going and doing fun activities, and just that makes me tired.  Kim is very patient, he still goes hiking, something I never did with him anyway, but movies, dinner, anything is just hard.  I am still working, I had to take a day off because of a leg pain that made it hard to walk, and it's not good staying home and doing nothing, good thing there was a Law and Order Marathon.

     Kim and all the boys got our play ground equipment set up, I know the kids like it, but right now it's too too hot to play on it, but it will be fun in the years to come.  We are going to plant a mature tree over there to help with shade, but they only come so  mature.

     We celebrated Charlotte's #2 birthday.  Her mom and dad had a fun family party for her and all the kids had a fun time.  She has gotten so big and fun, loves water and being outside.  She is a sweet big sister, and sings and dances.

     Kim had head (scalp) surgery.  I'll explain. He had his face treated with the most awful chemo cream that burned his face and turned it dark red almost black in spots and was very painful.  His Dr. was trying to get ride of all the sun spots, and skin cancers or pre-cancer spots.  He was miserable for weeks and has said he'd never do it again.  But he also had a basil cell carcinoma lesion on the top of his head removed.  I was glad when that thing was gone.

     The whole family went to Snowbird and played. we were celebrating Kim's 60th birthday.  The sad part was Kim didn't get to join us until almost 4 pm.  He had to conduct a funeral in the ward.  So the few rides he went one he said he had a good time, I know the rest of us did.  Just being with all the kids was great and I was able to keep up for the whole day, shocking I know.  I do have to admit all the little kids have a love of speed, when I was with them they just wanted to GO FASTER!

     I really really need to keep a daily diary of all the things I've been through but I just don't. But a few things are I've received a blood transfusion a couple of times, my count just gets  too low.  I received a shot call Nupogen  because my WBC was low too.  A lovely Colonoscopy and upper GI scope, all showed I was fine, no ulcer just irritation in my stomach.

     I've been working with a few Dentists went for one root canal, that turned into 2 that has now turned into constant pain in my jaw.  The 3 different dental guys say after all they've done it is not the teeth but the jaw.  So I probably have a Myeloma lesion in my jaw. How to  treat that we are just not sure yet.

     So I'm almost done.  On Friday the 5th, I found a lump in my left breast.  Tues. it was Ultrasound, which found 3 lumps,and then on Monday the 15th 2 of them were biopsied.  And on the 17th when the results were supposed to be back, we only knew it  wasn't breast cancer, but it was a cancer, they were not able to identify it here, at McKay. and had to  send it to a outside, SLC Lab, and so the "what if" game started.  My Dr. gave me lots of different possibilities and how each would be treated.  We finally told the kids, because I was hoping to have some answers before I told them.

     On Monday the 22nd the results came back that it is my Myeloma, but it has basically gone a muck.  I had a PET scan that showed more  areas of concern. My right breast, my jaw, I've got painful ribs again that could be fx. but they are livable. A few other spots showed up, but they can just be my regular MM areas, not giving me any problems.

     So as it stands, My Dr. is going to meet with his 3 partners, get their opinion,  and talk with my Dr. at LDS and see what direction they want to take.  Again a few options were mentioned, but again #3 chemo didn't work and my body took advantage of that and went a little crazy.

     I am grateful I can keep working, I grateful for a husband who can just hug me , hold my hand and admit he has nothing more to give at times.  He lets me cry as needed (which is all the time), he fixes a lot of meals and will do take out if that's my craving!!  He helps with the laundry and anything else that needs to be done.  I love him more than words can tell.

     I have the best kids in the world too.  They call, they will help if I need them, they tell me all the time they love me, they all get along so well that just that warms my heart.  I love them so much.

     I have friends both a work and home that care about me and want to help, (I really don't need anything), I have received sweet little gifts that are reminders about how much they care.  I need to be more Christ-like. like they are, and give to those that are in need, even silly little "I'm thinking of you messages".

     And last but not least, our families who care and call and want  up-dates, ( sorry I didn't tell anyone the latest) and too what to help where help is needed, but really we do just fine at home, but hearing from them is heart warming and makes me so happy that we have stayed close and care and love one another.

    I tell Kim all the time, "I'm tired of this, I can't do this anymore, why is this so complicated, it was supposed to be a fairly easy treatable cancer" we were told,   But I will keep fighting this trial, I'm sure it won't be my last,  And my gratitude to others love keeps me going. 
   

   

     

   

Families Are Forever

I know these two pictures look a lot a like but they are very different. The one on the right was a fun event, we had bailiff, (wearing bullet prof vests), lawyers, judges, random people just watching I guess.  Mr. and Mrs. Hardcastle were asked a bunch of questions about who they were and their marriage date, and if they were willing to take on all the rights and responsibilities of being Burton's parents.  That his birth parents had given up all their rights.  Obviously they answered all the questions correctly, because they were legally given their son.  What an exciting event.
     The picture on the left is from the Ogden Temple.  In this beautiful setting,  there were lots of Aunts and Uncles, Grandma's and Grandpa's, friends and we were told heavenly family too.  A very nice temple sealer, who gave words of advice to all of us, and then the little guy was brought in and held between his loving parents and with very few words said he, became his parents eternal son.  Also a most special and exciting event.  This was followed by his being given a name and blessing by his father, which was a very special blessing. Then food and visiting and cousins running all over the place.
     Watching the kids have fun and seeing all the love and support that Gordon and Jessica have is so heart warming and tiring!!!!
     Once again the Lord is watching us and his blessings are many.        

OUCH OUCH

     New update,  I went yesterday for what I again assumed was a regular MD appointment and then chemo.  I was told once again that my chemo wasn't working. 1st OUCH!  It was because of the symptoms I've been having of fevers and new pains, and being so tired all the time, but either way it's not helping.  So onto chemo number 3.  This coming Friday, if the LDS transplant team approves the new drug, I will start it.  I asked a few more questions today about the drug, and was told the first time I receive it, it will take about 8 hrs.  I will be sitting in a chemo chair for 8 hrs. hard to think about. I'll need to find a good TV series, some good music and take a long nap.  I guess there is about 4 hrs. of pre medications then the drug is started.   So each time after that it's only about 4 hrs.
     But the good news is I've been approved for the stem cell transplant.  I still don't have an actual start date, but I did have a Bone Marrow biopsy, second OUCH!  They drew a bunch of blood and I guess I'm moving forward.
     Boring I know.    
    
      

Counting blessing 10 x 10 (little toes and fingers)

     May 10 about 7:30ish PM  we received our 8th grand-baby.  Matt and Jenn had a beautiful little girl, Margot Lynn Hardcastle, 8lb 7oz, 22" long, and tons of dark dark hair, that everyone has commented on.  She appeared perfect to her parents, the nurses, the Dr. and the family, even big sister Charlotte expressed no concerns about her new little sister.
     But about 5 days later Matt and Jenn were told she had, what was called congenital Hypothyroidism.  So it's just that, a low thyroid level.  I didn't even know they checked for that, but after much research, done by the whole family, one thing I found out is that it's a test that's been done, as part of the new born profile, for 20 years.

     Okay we thought, so low thyroid, but again with Google, Web MD, or what ever site makes us all experts, we also found out that this condition needs to be treated quickly and with in a certain time frame to Prevent Permanent Brain and Physical Impairment.  So Okay again lets get her treated, well it wasn't happening and no Dr's were talking to Matt and Jenn.  They found out their Dr. was physically out-of town.  They were sent for more blood work to make sure the numbers were correct, in the mean time, Margot was the perfect baby, too perfect.  She was sleeping all the time, a sign of low thyroid in infants, we were all getting more and more upset and concerned.
     On Friday the 20th Matt called me and said the wrong blood had been drawn and now they  were being sent to the McKay Hospital lab to draw the correct blood sample.  They were frustrated and scared as was I.  So before I went for my Chemo I looked up Primary Children's Endocrinology dept, got a general number, dialed it and got the nicest young man on the phone.  He listened to me explain our situation and calmly but what honestly seemed firmly, told me to have a referral faxed to them TODAY, and gave me the number and told me that today or tomorrow morning their on-call Dr. would look at all the results.  He said the baby would get an immediate appt. with them and that things would be taken care of.  So I called Matt with the information and he started working on getting the referral sent down, which happened quickly. Then with-in a couple of hours of the lab being drawn, the Dr. On-Call called Margot's on-call Dr. and gave them the order for what medication and dosage she needed and what pharmacy it was at.
     The rest of the story is, with in about 2 days she was acting like a typical new-born, crying more, awake at night more, eyes wide open more, pooping more and just more active.  The day Matt said she was crying most of the day, I just wanted to cry myself and I didn't feel sorry for mom and dad, I was just more grateful than ever. 
     Our Father in Heaven knows each and everyone of us, he knows our name, he knows our needs and our situations as unique as we may think we are, he know them, feels our frustration and knows what we need. We may not think he does, but he does.  One thing I've learned from all this is he is listening, no matter how quite our prayer might be.  I've been told now for 6 months, "you are in my prayers or I've put your name in the temple roll, or I'm thinking about you", I've decided it never hurts to have others prying for us too, right?  But we have to be listening and with all the noise around us it's HARD!    
   

Moving Forward (is this happening to me)

     Yes I am moving forward, just a different forward than I thought would come this quickly.  When I meet with Dr. J. the following week, he did have a plan.  He explained again that my MM wasn't responding to normal chemo and he didn't want to move too far forward with any of the new drugs, because some of them could preclude me from having a Stem Cell Transplant down the road, so after of lot of investigation and consultations he was moving to a different chemo regimen and wanting me to meet with the Transplant team at LDS hospital.  
       I visit with women everyday and help them try to understand their breast cancer, how to move forward with their life and I try to give them help with what ever they need.  I have not had a ME, (case manager) in my MM road up to this point.  Well that very night, (after my appot. with Dr. J.)  I got a phone call from a case manager for MM from LDS.  I finally felt like I had an advocate, someone who understood and was here for me.
      I did have to wait 3 weeks for my appointment,
      The day finally arrived and we meet with a PA who did a physical and went over my 10 page history papers, then we meet with Dr. G and my case manager.  She was so informative and easy to understand, and explained some possible reasons for why my MM wasn't responding and what Stem Cell could do for me.  She went on in detail on how it worked, and how it was done, that it worked for  97% of those who have it done.  And they hope I can get 2-5 years of remission.    Even though she was easy to understand it didn't make any of it sound any easier.  It didn't scare me too much, but it still makes me anxious.    
     I have to share an experience that only lasted for a few moments.  As I was listening to Dr. G. suddenly I was somewhere else thinking....is this information something that I am learning about to teach someone else or is this really happening to me, this only happens to other people, but then it all came back that yes this is my life, my situation, my disease.... It was a surreal little experience.
     Work has been a huge huge weight on my mind since the whole stem cell idea was brought up.  My boss was already in the process of hiring a PRN RN that we could train in my job and he could also use in his other department.  Everyone knows that any new hire can take weeks and weeks to get through the hiring process, orientations, training, etc.  Then we had a meeting with our 2 Dr's. my boss, office manager, and a few others and we were discussing what needed to happen in my abscess.  Long story short, we used to have a PRN RN, and she quit working to concentrate on her own businesses, and it was suggested to give her a call and see if she might be interested in coming back to help us out.  And She WAS.  She had been thinking about us for a while and was actually missing us and was very interested. 
      Prayers are answered in so many ways.  The moment I was told she would help us, a very heavy load was lifted.  I started to cry and found out it was Dr. I's. idea.  Just an FYI, she was raised LDS but has absolutely nothing to do with the church, but I thanked her for listing to her promptings, she just smiled and said she wanted the best for me, but I new she was inspired, and she listened!!

     Our family is growing, suddenly we have 8 grand babies now.  The Lord is watching over all of us and his blessings are felt every day.

 We've had a new beautiful baby, Margot Lynn Hardcastle, born May 10th.  Mom and baby did great, but I think dad has been a nervous wreck for the last few weeks.

A sweet little 3 year olds birthday, Steela was delighted with her gifts, donuts, candles and attention.

      And a music recital for Hyrum and Kate.  They have always loved music. I've been in the car with the 3 kids before and had them singing at the top of their lungs Le Miserable, or humming star wars, and so many tunes they hear over and over again with their mom.




 Milo loves his cars, and asks for hugs.  I love that!

Benson is not only crawling but standing up and is total mobile, time for the baby stair gate. 

Burton and his bright eyes and hikes everyday with his mom, he should start keeping track to his miles, he'll soon be able to brag about his long distance travel.

And Charlotte became a BIG sister.  She loves her little sister and is always at her side making sure she is being loved and cared for.  So sweet to watch.

   

       This bunch of littles makes me so happy and brings such joy to my life. (I love their parents too), and they know they are always welcome as long as the kids are with them!!  No matter when I start this medical procedure I know between Kim and my kids I will be taken very well care of.     
     

Dissapointments

     I was getting used to the new routine.  Normal working, normal family life, chemo every Friday, pills every day, weekends where I have tried as hard as possible to be upbeat and not let my stomach-upset rule my life, but to be honest there have been many nights that having a dinner (takeout)  an getting a Red Box movie is the extent of our date nights and activities.  Kim is very patient with that, he always says he doesn't mind. but planning for future trips or activities is at a stand-still.  By now we usually would have our summer planned with at least a short trip, we weren't planning a big trip this year, due to our great Baltic vacation last year, can't do that 2 years in a row!!

     Over the weekend of Easter, we did fly to see Jodi and Trever, but this visit was a bit different.  We were helping move them back to Utah.  Trever was offered a job with a company in which he knows one of the owners and after much negotiating they were taking a new job in UTAH.  They sold their home in 24 hrs, and were headed back home. I really didn't do much to help, if anything at all, but help Jodi and entertain the kids.  Trever drove his truck the whole way, Kim drove Jodi's car with me, Jodi and the kids, and Milo, Trevor's dad, drove the U-Haul.  All I did was complain at night that my right leg and ankle were so swollen and painful, I was scared for many reasons.  Did I have a blood clot, could I not even do car trips anymore? Or What?  just new problems. 
     It was a new problem.  A couple of weeks after we were home I started having a pain in the front of my left leg.  Actually the whole leg was hurting and aching, but coming from one spot.  I walked over to my Dr's office and he was sitting at the receptions desk, he talked with me and wanted an x-ray right away.  I'm used to that so I later walked over to radiology and was x-rayed.  It's very convenient to walk 50 feet from my office and to get my medical care. 
     The next day was my scheduled chemo.  As I'm waiting in my recliner, visiting with a sweet lady who was receiving her last treatment for breast cancer, so I ran (walked) back to
my office where we had a few left over pink roses, and brought them back for her.  So I'm waiting again to get started, the cute aid came and said my Dr. wanted to talk to me.  Well that doesn't sound good, I felt like I was in trouble and heading to the principles office.  He came in and confirmed that my pain in my leg was a new lesion, of many that I have, but it was deteriorating and causing the pain, but it also meant that with that, and my blood work earlier in the week, which had no improvement, that the chemo I was on was not working!!!! 
     Just an FYI, the 3 medications I was on have worked for many people for many years, as many as 6 years.  I didn't get 4 months.  As I was looking at him, begging inside to please give me good news for the next step, he had none at the moment.  He showed me my lab work and my x-ray he explained what was happening.  I watch my lab every week seeing the difference from week to week, but not totally understanding it. He told me he needed some time to really look at every thing, to get some input from his partner's and that I might need to consider a 'Stem cell transplant', NOT something I wanted to hear.  I assumed that someday I might need to go that direction, but way down the road.  He said that my disease was progressing much fast than he ever imagined!  That is a lot to be told and take in.  So no chemo today!  I went back to the infusion room, hugged the sweet friend I had made wished her luck, walked back to my office, shut the door and cried!
     That night the kids had planned a miniature golfing activity for my birthday.  We all had a great time together, and that's what is important.                
    

Life goes on

     The end of that last entry made it sound like I was dying, soon,  I am not!!!  Christmas went on as sort-of normal, seeing everyone and answering lots of questions about a disease that I still don't know much about and just trying to figure out life and treatment.
     During their time home, Jodi and Trevor had Benson's baby blessing.  It was a fun night, one that the 2 of them worked very hard at making just right.  A lot of family, on both sides, came together on the Saturday, following Christmas, and gave a name and a very nice blessing to little Benson Trevor Flint. 
    

 Cute family photos from the blessing night.

     After Christmas I did get my first "infection", probably just being around sooo many people, it was just a normal cold, but I couldn't get over it, I ended up on 2 different antibiotics, but it's a little scary  now knowing that I can't even get over a simple head cold without medicine.  I now know too what having a decreased  immune system means. It won't be my last of such illnesses.  At work I was wearing a mask for almost 2 weeks. Just call me China Women.

     We all know that answers to prayers come in so many different forms.  I know I've had prayers answered, but never as a bolt of lighting or a loud voice from heaven.  so there have been times I wasn't paying attention and the Lord probably thought 'well if she's not going to listen, then what's the point'.  Anyway I have always had problems with my right knee.  3 years ago I had the meniscus repaired, it help the pain for a while, but the swelling would continue along with pain that would truly limit so many activities, and just make me so frustrated and I'm sure it did Kim too. I would get it drained every few months and maybe a cortisone shot  a few time a year.  With the MM my orthopedic Dr. told me he was very reluctant to keep draining it, because of the risk of infection with each drainage.
     There was a weekend in early February that I actually had pain and swelling in both knees, this was new.  I didn't even go to church, I stayed home and kept them iced and elevated.  That's all I could do.  I was sick about work the next day with the pain and inability to hardly walk.  I just don't miss work, I just don't, I think my whole family is like this, our mom was such an example about work and through everything she went through for years she just kept working.  Anyway I didn't know what to do.  I asked Kim and Gordon to give me a blessing.  I think deep down I just wanted the pain to go away and be able to walk better.  After the blessing, I of-course felt the same.  Gordon left and I just cried, something I do a lot of.  But I suddenly knew I had to go to the ER and get them drained.  I hate the ER, everything about it I hate.  I didn't think at first this was the answer AT ALL to the blessing.  We went in and we did the usual wait.  Eventually I was able to get both knees drained, no Cortisone shot, I went home swearing I was never going back, no matter how bad I was, I hate it.
     But the Dr. gave me a piece of advise that no one had ever told me.  He said there was a Natural Anti-inflammatory, Turmeric (the spice in pill form) that can help a lot of cases like this where the swelling and fluid just keep coming back for no apparent reason.  I walk out of the ER at 3am, Kim and I both went to work the next morning, and I went after work and got some Turmeric.  It is now May, and this is the absolute longest period of time I have ever gone without server knee pain and wanting them drained. The Lord gave me the answer.  He gave me the confirmation that I needed the ER that night, he gave me a Dr. that cared enough to give me advise and not just treat the problem, I was with a patient husband who continues to be understanding, caring and does his very best to not show frustration, something I don't do very well.
     I've never asked for this disease to be taken away from me, but I do ask to be able to hear the still small voice that will be there when I need an answer or patience or understanding of what step I need to take next.