First Anniversary of Autologous Transplant

June 12th was the anniversary of my first transplant last summer.   I have come a long way and so grateful for every day that I can go outside and be a part of my loved ones lives.    All the testing to see how the transplants worked will be in August when we approach the anniversary of the donor transplant. So for now, I am continuing to get stronger and I finally feel better from the last hospitalization almost 2 months ago.   Healing just takes longer for me.   And I'm still immune suppressed.  I am out and about, but need to wear a mask in crowds.    Doug has helped with the garden this year as I'm not to be digging in dirt or leaves or anything with potential mold.

We've enjoyed having our children and grandchildren visit.   We have done lots of hand washing and nobody has been sick.    We have more children coming in town in July.   And I may take my first road trip to Jackson with Doug in July.  He has a conference and the change of scenery will be great.    

The tacro taper is starting to happen-I hope this week.   This will make a big difference as I get stronger.    It's a drug to suppress graph vs. host, but also leaves me immune suppressed.  What is someone to do?  

What did I do on June 12th this year?  (Besides celebrating Katie's birthday.) I went to Hatch's Chocolates on 8th Ave and bought some ice cream.   Last year at this time, 8th Ave was the view from my hospital window.    So I finally had to go in and see what it was like.   I looked up to see where my room was for a month and felt such gratitude that I have come this far and this summer is so different.
Thanks everyone!
Kathy  

Time Marches On.....

It's been nice to be out of the hospital these last few weeks.  Although, I've been fighting another virus and has kept me from getting my strength back.   I am doing better and the medicine I'm taking is working.  If it's not one thing, it's another.  I'm rolling with the punches and will be pleasantly surprised when I can travel and be a little more 'normal'.  My first trip will be either to Minneapolis (both Andrew and Anthony have jobs there) or to Carlsbad, CA to see Katie and her family.   I miss Katie and her family so much.   Their visits really got me through this past year.   She did stay out of harm's way with the fire this past week, but it was scary, and the fire was a little too close for comfort. (At least for me-I was on pins and needles all Wednesday afternoon.)  The fire happened all so fast.  Katie and I had talked on the phone that morning and we were laughing about mundane things and then I got a text from her a couple of hours later saying the fire was five miles from their home and unpredictable.   The packed their valuables (children) and went to a beach farther away where they could see the smoke, but not smell it.    Things can happen so fast!

My greatest disappointment to date is that I could not travel to Andrew and Anthony's graduation. It was something the doctors and I had been talking about and hoping I could go since February.  But I know I made the right decision. Andrew's graduation with an MBA was Friday in Iowa City and Anthony's graduation with an MHA/MBA is tomorrow in Minneapolis.  Luckily, I have a very supportive husband who went anyway and gave them love and support.  Congratulations to these two darling boys of mine.  They have worked hard, been modest about their achievements, have worked hard while having children and supporting their wives in their work.   They could  have not  done what they did without their wives, Kathleen and Bekah.  I love these girls and so grateful they are part of our family.

My daughter in law, Kathleen, sent this to me a few weeks ago.  I love what it says.  Of course, I'm hoping my cancer is gone, gone, gone.   But, it sums up how I feel about the dreaded disease.

CANCER IS SO LIMITED....
IT CANNOT CRIPPLE LOVE.
IT CANNOT SHATTER HOPE.
IT CANNOT CORRODE FAITH.
IT CANNOT EAT AWAY PEACE.
IT CANNOT DESTROY CONFIDENCE.
IT CANNOT KILL FRIENDSHIP.
IT CANNOT SHUT OUT MEMORIES.
IT CANNOT SILENCE COURAGE.
IT CANNOT REDUCE ETERNAL LIFE.
IT CANNOT QUENCH THE SPIRIT.

Grateful for life and for all of you.
Kathy

I'm home

I was able to come home tonight-Tuesday.  It feels good to be home after 6 days in the hospital.  I'll continue to go to the clinic everyday for labs.  My electrolytes got out of whack, and so everything will be checked until I'm back in sync.   I am grateful that I got over this virus.    Even though it came on very fast, within a few hours I was so dehydrated that I was experiencing some other complications.   But, I have bounced back.   This took a lot out of me, but every day I'm feeling better.
So the roller coaster continues with hopefully a sense of humor, patience and lots of hope. And gratitude for answered prayers.
Kathy

FINALLY....AND THEN

APRIL WENT MOSTLY WELL.   I WAS PUT ON AN ANTIFUNGAL THAT I SEEMED TO HAVE A REACTION TO, SO I STARTED AN IV ANTIFUNGAL.    FINALLY WE DECIDED TO USE AN ORAL SUSPENSION. SO SINCE I WOULD NO LONGER NEED MY CENTRAL LINE, I WAS ABLE TO GET IT OUT LAST WEEK.    I FELT FINE AND ALTHOUGH DOUG CAME HOME FROM BOSTON SICK, I THOUGHT I WAS OUT OF THE WOODS.  WE HAD BEEN SO CAREFUL.    WELL...DURING THE NIGHT ON TUESDAY, I GOT VERY ILL.   I THREW UP AND HAD DIAHREA EVERY HOUR.   I WAS SO WEAK AND DOUG WAS IN LOGAN.   LUCKILY ANTHONY CALLED ME AND I HAD HIM CALL MY NEIGHBOR WHO HAS A KEY AND SHE CAME IN AND HELPED ME WITH SOME LIQUIDS.  BY THE TIME DOUG GOT HOME I KNEW THAT I NEEDED TO BE IN THE HOSPITAL.   SO WE IMMEDIATELY CAME UP TO THE 8TH FLOOR AND HERE I AM AND I AM MUCH BETTER AFTER BEING ON AN IV NOW FOR 3 1/2 DAYS.   I WAS DANGEROUSLY DEHYDRATED AND MY KIDNEYS WERE REALLY STRAINING.   IT'S TAKEN A FEW DAYS TO BALANCE EVERYTHING ELSE.   I WILL GO HOME WHEN I NO LONGER NEED EXTRA HYDRATION.   

I LEARNED SOME LESSONS THROUGH THIS..  I KEPT THINKING THAT I WOULD GET THROUGH THIS, BUT I HAD NO IDEA HOW HARD THIS VIRUS COULD HIT ME.   IT HAS BEEN RULED AS A VIRUS.    AND I NEED TO HAVE A BETTER BACK UP PLAN.  I THOUGHT I DID, BUT THERE WERE SOME CHANGES WITH PEOPLE'S SCHEDULES THAT I KNEW ABOUT AND I DIDN'T WANT TO BOTHER ANYONE.  BAD IDEA!    

SO, I'M HANGING OUT HERE, AND AT LEAST I'M NOT ISOLATED.   DOUG COMES EVERY DAY AND IT'S NOT BAD.   I'M FEELING MUCH BETTER AND HOPEFUL TO GO HOME ON MONDAY.  ALL DEPENDS ON HOW MUCH LIQUID I'M LOSING.   

I HAVE LOVED SPRING.   IT'S DONE SO MUCH FOR MY SPIRITS.    I'VE BEEN MORE ACTIVE AS WELL.   I SHOULD HAVE BEEN MORE CAREFUL.   STILL SO REMINDED OF HOW CAREFUL I HAVE TO BE.   

LOVE TO ALL AND GRATEFU L FOR LIFE
KATHY
PS KATIE MOVED TO CA.  SHE IS MISSED, BUT NEEDS TO BE THERE.  I'M COUMTING THE DAYS THAT I CAN ENJOY  THE CALIFORNIA SUN AND SAND.

Home Sweet Home

I got home this afternoon after 5 days in the hospital, 5 days in isolation and 15- 2 hour treatments. We'll hope that this helps.    I'll have the virus for perhaps a weeks, but should be getting better.
Thanks for all your love and concern.
     

This is my last treament Sunday afternoon.   I was so ready to be done.  Soon this will be a distant
memory.

A Set Back

Hi Everyone:   I'm back in the hospital for five days.   I went to clinic on  Tuesday and had a little cold.  They did a nasal swab to see what viruses I have.  When I got home I got a call at 5pm from the PA and saying that I had RSV (plus the rhino virus and corona virus)  and needed to be hospitilized for treatments for the RSV.  If not treated, it can quickly turn into pneumonia for bone marrow patients.   So, I was at the hospital at 7:30 pm that night and got my first treatment at 10 PM.   The treatments last for two hours, every eight hours.   I'm not getting quality sleep and I'm tired. But, it's better than the alternative of being in the ICU with pneumonia.    
    The treatments are not painful, but terribly inconvenient.    I am in a tent on my bed breathing in the medicine via an oxygen mask.   I then have to take a shower, and sheets and clothing have to be washed. Everyone wears a mask in my room and I'm confined to my room.  
     I'll be very glad to go home hopefully on Sunday afternoon.   Until next week.
Kathy

Turned Another Corner

It is nice to say that I am feeling so much stronger and can tell that I am so much better than I was last fall.  I'm still on a lot of oral meds, but my IV has been reduced to one hour a day.  I started out doing 6 hours a day, so I am feeling less tied down.  

I am going out more, running errands and shopping.   I do have to pace myself and in most places, I still wear a mask in public.   If stores are not crowded than I'll take it off as it is difficult to wear.  

I  go weekly to the hospital, but just this week I was able to go in for blood work only.   I'll see the doctor now on an every other week basis.  That is very encouraging and hope that the tapers for the medications start and the central line will come out.   I'm hopeful that will happen before summer.  

My hair is growing back.   It is super short and I'm no longer wearing hats everywhere.   It came in as startling white/silver.    Everytime I looked in the mirror, I jumped.    I really did not recognize myself, although many people thought that I 'rocked' that look.    Last week, I had it dyed to blonde.   It will be a work in progress to get it to the right blonde.  It is really hard to dye white hair.  
Funny thing-in the hospital I really didn't think I would ever dye it back.  I just wanted hair.   I guess I must be getting better, since it matters to me.

Everyone is still so nice and concerned.   I appreciate all the good and positive thoughts sent my way.   Yesterday, a nurse told me there is joy in his job as he sees that what they do in bone marrow patients is to give us a few more years.  I told him that I certainly hope I get a few more years!   I'm looking at a long life!   I have to have that hope!  Life is good.