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.