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.    

Same Old, Same Old

    I wish I could report that this process was buttoned up and I was off all the medications and IV and going out in crowds.  Luckily, I'm reminded every Monday at clinic that I have to be 'extremely' patient.    And I'm learning that it's no use to even have a time table in my own head as there are always little bumps along the way.   But, the good news is that the GVHD skin rash has now diminished and I did not have to go back on high dosages of steriods.   It has delayed the taper of other medications.  So, I still avoid crowds and wear a mask in most public places.   Although, Doug and I have found that a late afternoon dinner at a good restaurant is safe and early matinees are usually empty of people. I'm walking on good air days and try and get out of the house at least once a day.  
    We are looking forward to a new grandchild this week.  Doug's daughter Emily is expecting another girl.   We loved having Anthony's family visiting for 3 weeks, while Anthony went to China for his MBA program.  (They stayed with Bekah's family.) They missed one of the polar vortex's in Minneapolis, but got it this week. (-40 wind chill).   Andrew went to Dubai with his MBA program and Katie and Chris are starting to get ready for their move.
     The blue sky is a rare sight this winter, but we have had more than most as some days we are above the inversion.  The longer days are also really nice.   It's during this time of year that Spring cannot come soon enough!  
      We will always be continually grateful for all the inquiries and concern about me.   Thank-you for your interest.
Love, Kathy  

It is a long road

      We have had a wonderful month with family here for Thanksgiving and a wonderful Christmas Eve and Day with 2 children and their families who are in town.  
       I have slowly been tapered off the prednisone to 5 mg.   I have been sleeping so much better at night.  Although, a couple of weeks ago, a rash appeared on the trunk of my body.   The doctors all agree that it is a graph vs. host disease and happens with tapers.   The rash has been interesting.  It is ugly red and itches a little.   It also seems to run its coarse, lighten up, and then  will appear on some part of my body.  Luckily, it has not gotten to the point up going back on higher doses of prednisone.   I have a steroid creme that seems to work.   I don't know why, but I have not felt as well the past couple of weeks as I've been going through this.   And it has also delayed the taper of the other drugs that I am on.   Oh well-it's all part of going through this and there is not a definitive answer for what the near future holds.   I was told at clinic on Monday that people that get graph vs. host seem to do better in the long run.   I'll take it!    The trick is keeping it under control!  Who knows what other surprises I will get.  
       I was fortunate to do most of the shopping for Christmas online.   I went out a couple of times in early November before there were any crowds.    I also made picnic 'blankets'( three beach towels sewn together) for every family.  I did this when I was on the high doses of prednisone, and I had more energy than I have today.  I had help with wrapping and with shipping and towards the end with last minute shopping.
      We have loved the Christmas cards we have received and all the gifts from neighbors and friends.   My ward Relief Society put together a quilt.   Everyone took their own square and did their own creative thing.  A very talented woman then pieced it all together and quilted the edges and in between the squares.  It is such a treasure and I look at it every day!   I'm still so overwhelmed with how people care and show their expression of it.   I haven't gotten discouraged, although I was sorry to miss every Christmas party we were invited to.    This is a time to heal and continue to be careful and cautious around crowds and gatherings.  
     We look forward to a new year, and healing and getting back to some normalcy-but not putting a time table on anything.
      Love you all and wish all of you a great year!
Kathy

DAY 100

     Tomorrow is the big day where I reach 100 days post transplant.    In the summer we couldn't even get our heads around 100 days out as it seemed such a long ways away.  But here we are.    So what does it all mean?    I think that is what I've been asking myself and I've come up with a few answers.  The first good news is that I have been able to be home since September 14th and haven't had any infections.
     By reaching this day, I have been able to slowly taper off the prednisone.  I still have a couple of weeks before I am totally off of it.   It means that sleep has gotten a little better.   I still go in for weekly check ups.   There have been hic hups along the way with blood counts and medicine levels.  I still have some tough side effects from the immunosuppressant drugs that I'm on.  I'm reminded weekly of the slow healing process and possible complications still ahead.  But there is some encouraging news, too.  I am getting out a little and can do more around the house.   I have had some tests that show that my bone marrow now consists mostly of donor cells.   My blood still needs to reflect that so it is a matter of patience and further healing.  And I will be going in for more tests after Thanksgiving to mark the 100 days.  
     It would be nice if this could all be buttoned up and over with.   But, we have come to understand that there are a great many variables in this process.  Every week I am evaluated, and some things change.   I am back on an infusion twice a day (added to the other two infusions) that I had been taken off of in October.   So, I move forward with some things and then take a step or two back.
     I enjoy my days and even though some days I'm on the couch more than other days, I enjoy the simplicity of my life.   We are looking forward to having our children here next week.  They are staying at other places, but just to see the grandchildren and have them around a little will bring me a lot of joy.
I'm still amazed at the generosity of those who express their concern and love for us.  Everyone has been so good to us and we appreciate more than we can say how grateful we are for all that is said and given to us.      Love to all,   Kathy

No news is good news

     I know it's been a while since we have updated.   "No news is good news" is why we haven't updated. Everything is going along as it should and my weekly check ups are more of the same.   My blood counts do bounce around a bit, so I don't get too excited if they get really low one week as the next week, they may go up.   All of them are still low-below the normal range, but lately have gone up and that is encouraging that the bone marrow is working.   I know that it will be a while before anything is 'normal', so I don't get too excited.  I had a bone marrow biopsy and CT scan last week and both show that the doner cells are working.  
    I am enjoying going on some outings.  I also try to get out and walk everyday.   I feel that I have a little more energy and stamina.   And my hair is slowly coming back in.    I love seeing my children and grandchildren.(There are only 3 grandchildren that live here.)    I had  a great weekend with Anthony a few weeks ago.   He was a great help and fun to have around.  We're looking forward to Thanksgiving.  We have several coming-all staying at different places-but it will be wonderful to have family around.
    We are still being very careful about 'germs' with the flu season coming.  I know I'm OCD about it, but I have no defenses right now, so I have to be careful.    
    We have a lot to look forward to and I'm so grateful for life.   It's a joy to wake up every morning.
I'll get Katie to post the next blog-she is much more interesting and has a flair for writing.
Thanks for all your support!
Kathy