Sad and frustrating news

It has been awhile since I published anything.  Partly because I have been so busy at home and partly because there has been nothing new to report.

Yesterday, mom and I were in Calgary to get the results of the bone marrow biopsy done last week.  Here are the results:

The transplant has not worked.  The inside of my bone marrow is as empty as when I went to Calgary in the first place.  We aren't sure if this is graft failure (my immune system reject the donor),or if I have a very poor engraftment.  The machine that runs that test is broken but I should find out in a couple of weeks.

I'm disappointed, sad, frustrated and angry. Once we initially got engraftment, I thought we were in the clear.

The doctor wants to go ahead with a top up. This would be a special top up with the immune components taken out to try and prevent Graft vs. Host disease.  I may have to do more chemo, we won't know until the tests come back.  If the top up doesn't work, I will be looking at another transplant with a different donor or electing to live out what life I have left with blood product support. I can't even fathom making that choice.

My hopes for the future, a pretty glass menagerie, just slid and smashed on the floor.

Home again, home again....

Well I am back in Cowtown.  I got to go home for 5 days!!!!!

My anxiety and depression with being here was getting really bad.  For three straight days, I couldn't function.  I kept rolling from one anxiety attack to another.  When I had my doctors appointment, Michael came with me and explained to my doctor how things were not going well.  She decided to sent me home on the condition that i would return for the bone marrow biopsy a week later.

I couldn't get out of here fast enough.  Thankful Michael was willing to pick up and go immediately after my appointment.

It was really nice to be home.  Madeleine was so happy to be back in her room with her friend next door.  My neighbour helped me out on the days I wasn't well which I am hugely grateful for!

Being at home is a balm to my soul.  I feel stronger now.  I'm not happy about having to be in Calgary but I'm not anxious.  I'm also hoping to convince my doctor to send me back home again.  Madeleine is hoping for this too.  She desperately wants everything to go back to normal.

Otherwise my health seems to be improving slowly.  The doctor has decided I may be lactose intolerant from the chemo.  It seems to help to reduce the dairy but hasn't resolved everything.  Blood is still slow but maybe tomorrow we will see something good.

Back to the Calgary normal....

       

What a busy week!

David was down for the long weekend.  It was nice to spend time just the two of us and as a family when Mom and Madeleine came. 


Madeleine has been having a difficult time at home.  She is really missing Mom and her normal existence.  But on this visit, she came for a week now that school is out. 

We went on bike rides, worked on her grade two review, painted nails, painted sun-catchers and generally spent a tonne of time together.  I am incredibly grateful to my mom for helping out and entertaining Madeleine when I was fatigued.  But all and all, it went better than I expected.  There is always some readjustment when parent and child has spent time apart but Madeleine is so eager to please, she really tried her best.

By the end of the week, she was making beds and chopping salad ingredients.  She constantly ran around getting things for me. I can see she will be a huge help when I get home.

And Madeleine is eager to get home.  She talks about her room, seeing her friend next door, being with her brother.  She's eager for movie and pizza nights and wrestling with David.  I can't say I blame her.  I'm aching for all those things too.  Normal life...


I am worried about adjusting my expectations for home.  I know what I was able to do before the transplant and mostly I just pushed through the tiredness.  I'm not sure now.  I can't tell if my fatigue is just boredom or if its really more from the transplant.  All the material I read talks about the fatigue lasting for about a year.  But I've been living with fatigue for more than a decade.  I guess we can only wait and see. 

In the meantime, I put on a big soup of borsht.  Trying to heal my stomach to old fashioned way.  Nothing like the smell of beets and dill together!

Gratitude

I'm sitting in the clinic waiting for my platelets.  Next cubicle over, a gentleman is getting his pre-transplant interview.  The nurse goes through everything to expect and answers all their questions.

As I eavesdrop on their conversation, I am so grateful that I'm on this side of the transplant. I also wanted to jump in and tell him all the extras he will need to know like asking for Veronica's strawberry milkshakes.

While I still struggle with the transplant experience and the slowness of recovery, I must admit it is a miracle I'm here on the other side as healthy as I am.  As the nurse talked about infections and ICU trips, I remember thinking during my interview those things wouldn't likely happen to me.    But they did and more. It is a miracle that my heart has returned back to mostly normal function. That none if my organs are permanently damaged.

This journey to health has not been smooth but I'm still on the path and I'm grateful for that.

Urgent appeal

Canadian Blood Services is putting out an appeal for blood.  Their supplies are at a five year low.

I am asking my readership to consider donating blood.  I have had hundreds of units over the years and continue to receive red blood cells every two weeks.  I also receive platelets every five days.

I know it takes time and yes the needle isn't fun but please consider that ten minutes of discomfort will allow someone to live another day.

Here is the Canadian Blood Services link: www.blood.ca

Thanks,
Hugs and love
E

Weekly update

My behind is very sore.  I've been sitting here in clinic for 7.5 hours getting blood, platelets and magnesium.  The good news is that I'll be raring to go for the long weekend.

David is coming down tomorrow.  I haven't seen him in three weeks so I'm very excited.

Madeleine is coming Monday and she will stay for a week. Its going to be busy but good for me and her.

I did try to convince the doctor to send home early but it was a no go.  She is putting me on another immunosuppressant to replace the steroids.  She wants that stable first.  They are also watching still for GVHD and viral problems.

So I've started to red War and Peace.  I figure that should amuse me for awhile.

Blood counts continue as always, not great.  <sigh>.   One day.....

Update for the week

This week has flown by.  My best friend, Oksana came down to spend the week with me.  It is been wonderful. I haven't seen her in two months and I miss our talks very much. So we have spent a lot of time with a cup of tea, yacking.  The weather has been very poor so it was a nice way to pass the hours.

I have been two days in clinic this week.  It is much the same procedure as upstairs in unit 57 but things are more casual.  The nurses are great.  As my platelets start to stabilise I will got in less and less, probably only once a week.
The blood counts have not moved much.  I received a red blood transfusion on Friday but that is the first in three weeks which is good news.  My white blood count and neutriphils are holding their own at 1.5 and 1.0.  I'm pleased as I haven't had a shot of GCSF in about two weeks.  The platelets keep falling but we are starting to inch to more time in between transfusions.  I'm hoping this is showing a positive trend and not an abberation.  Also the production of my baby red blood cells is in the normal range which is exciting.

Madeleine and Michael came this weekend.  Both she and I are excited about spending the week together next week.  Trying to visit while still parenting in one day is too difficult and stressful.

My transplant doctor is back from holidays this week and I am going to starting asking about when I can come home. I think I can make a good case for an early return.  Wish me luck!!!!

Until next time, hugs and love
E