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      

56 days out

     Fifty six is the number  of days since I had the donor bone marrow transplant.    It feels good to be this far out.  Although, I'll sigh with a little relief once we hit 100 days out and then the 200 day mark.  
    So far-so good-no illness or infections and just the rhythm of my days go in and out.   I'm enjoying the time home to do whatever my body will let me do-and have a good excuse to rest, read and knit!   Yes,  I am knitting-I don't know what it is I'm making, but the knitting keeps my shaking in check and it's something that I'm  enjoy doing.   I'm going on a few outings to grocery stores and other quick errands, but always with a mask.    It's interesting how I'm not recognized with the mask and a hat on and some people don't know exactly how to react.  It's ok and I feel quite anyomous.  I don't mind at all.   It keeps people from asking too many questions.  
     I'm still so overwhelmed by the outpouring of love we have been shown.  Thank-you, Thank-you for all your heart felt wishes, and prayers in my behalf.
      I feel optimistic and hopeful and so grateful for medical science and the good team that I see once a week who watches over me with eagle eyes.
      Anthony comes in this weekend which I'm looking forward to.  My children have been so attentive as I have mentioned before.  They inspire me!  And Doug is taking great care of me.
      As always-with deep appreciation for everything life has to offer!!!

56 Nights!

Hello, hello world. Katie here- blogging in lieu of my lovely mother. 

She informed me the other day that she spent 56 nights in the hospital this summer; no wonder why she feels like there was no summer this year. That is no small thing. 

She continues to enjoy being home and has her productive spurts of cleaning out shelves, closets, etc, but also finds that such activities leave her wanting to rest immediately afterwards. She is greatly successful at making her own meals each night for her and Doug. Kudos. 

Heading into the sick season makes us all a little anxious and nervous. Anyone who wishes to visit my mom needs to be up to date on their immunizations, including and especially the 2013 FLU VACCINE. Very important. 

The long, slow, and gradual recovery continues, with deepest gratitude for everyone's magnificent care and love for Kathy. We all, really do soooooooooo much appreciate and treasure any prayers, fasts, and good thoughts people do for her. Everything about this long road is taken not in big strides, but in baby steps. She is also still on an IV at home, which she does on her own (Kudos again)--- and many pills that would require the smartest pharmacist to remember when to take them all! That alone is a huge chore, which, again, she does all on her own.

Baby steps, baby steps. She's doing as good as anyone could hope for. Thank you to heaven, for granting so many blessings and tender mercies!

Good week

I've been home 10 days and still loving it.   The days go by fast and it's a good week when I can be independent in taking care of myself and doing a couple of things around the house.  My life centers around meds, infusions and resting.(Sleep is still not great at night, but much better than a week ago.)  But that is ok.  I'm grateful that I am being carefully watched over by a very capable medical team.   I go in twice a week to the clinic where adjustments always seem to be made and I am questioned carefully on everything pertaining to my diet to sleep to activity and strength and everything in between.
    I'm being very careful as all my defenses are down. We are now being told that any visitors that I have should have had their flu shots, and if it is a nasal one, to wait two weeks before seeing me.  My sisters and katie are mostly my visitors.  It is ok as I really don't have a lot of energy to talk and converse, although in time, I hope that will change.   Doug is a great comfort and company for me.
     I'm lucky that my eyes have not been too affected by all the meds and I can read which I am enjoying.   I have a huge stack of books and it has been so fun finishing one and picking up another which is just as good and engaging as the one before.
     My head now has some white fuzz on top.   I may leave it white this time instead of reverting back to a blonde. I have not minded being bald as it has been the least of my worries.   I have been surprised by the lack of wigs I saw up on the 8th floor.  Being bald is like a badge of honor up there.
      We are still so overwhelmed my the caring thoughts, prayers, coming our way.   They mean so much to me as it is a while before I'm 'out of the woods'.    I have to make it through the first 100 days (which will be Thanksgiving) and then the second 100 days which is February to see how I really am doing. And then a couple of years to know if the donor cells really worked.   So, staying healthy is key.  And we find that the caring thoughts and prayers comfort us giving us great hope.    
 Thank-you for being interested and for caring so much!
Love
Kathy