Susan’s Story

Site created on October 31, 2014

In 1999, she was found to have an asymptomatic platelet count of 539,000. A bone marrow biopsy demonstrated mild hypercellularity with trilineage hyperplasia and mild fibrosis.  In September 2000 her CBC revealed a hemoglobin of 12.2, WBC 8.4, and a platelet count of 1.12 million. 
In September 2014, she began experiencing headaches and shortness of breath.  CBC revealed a hemoglobin of 9.5, MCV 100, WBC 3.8, and a platelet count of 65,000. 

We've always known that her blood disorder could turn into Myelodyspastic Syndrome (MDS) which is where we are at.  I'm sure you've noticed her cough?  Turns out that's could be related, too.

In October 2014 a bone marrow biopsy was noted to be sparsely cellular with 8% bone marrow blasts. The CALR exon 9 mutation was detected. JAK2 and FLT3 mutations were negative. Cytogenetics revealed 44,XX, dic (4;17) (q12;p13), del 5q, -7 (7).

For more information on MDS, go to: www.mskcc.org/cancer-care/adult/myelodysplastic-syndrome/about-mds (http://www.mskcc.org/cancer-care/adult/myelodysplastic-syndrome/about-mds)

For information on donating Bone Marrow, go here: http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/

Links are now working.



Newest Update

Journal entry by Chuck Allison

The last four months we have received many calls, notes and letters from many of you wondering how we are doing.

Its been tough.  At Mayo we had lots of bumps and they have continued, and some have been big. Since early March we pretty much knew what the outcome was going to be and did everything we could to prepare. We have found out there was much we did not do, and had not thought of.  The first two weeks of August were very busy.  I’m sure Cathy and I were together each and every day taking care of details which seemed to come out of the woodwork.  Then, I basically ran away.  I spent about four weeks at the farm where everything seems to slow down and the stress level with it.  I did little and only came home to keep the yard mowed.  I needed the time off.  That had to come to an end so home I came and decided to re-roof the house.  When you don’t have time restraints you don’t work too hard, so some days it was too hot, some to cold or even too windy to work.  Some days I didn’t feel like doing anything, so, overall the job took about six weeks to finish.  At that pace, nobody would hire me to do anything.  That brings up my job, or lack there of. I lost all interest in working that first week at Mayo and have never spent another day at work.  I had always loved my job.  I always liked the challenge of troubleshooting problems, any problem, but I had a much bigger problem to deal with.  Almost 50 years ago I started my job at Robb's by cleaning the shop and putting stuff away and that is exactly what I have been doing now a few hours a week.  Keeps me involved a little, but really, it just makes me feel good.  I guess I’ve made a full circle.  Anyway, I guess you can say I have retired.

As many of you know, I never was a cook and that has made things interesting. I’ve learned that a lot of the meals Sue fixed were not written down and are gone.  I have tried to bring them back, but they just aren’t the same.  As for my cooking, all I can say is “I’m learning”.  Someone asked if I was eating a lot of hotdogs, but really I have only had one package since August and still have six of the ten Mac and Cheese boxes I bought back then.  I did try baking cookies once--did you notice the word “try”?  If you did, you know the outcome, but I will that try again.  I have lost a lot of weight but have been told by others that is normal.  Still, I feel much better because of it.

The kids are fine.  I have only heard the grandkids ask about their grandmother twice.  They seem to bounce back much faster than adults.  As for me, truthfully it has been rough, especially now with the holiday season.  It's hard to go to the kids programs, knowing how dear the kids were to Sue and thinking of what she is missing. Very hard to sit down to a holiday meal that Sue always loved hosting herself.  Hard to decorate the tree and buy the gifts that she mostly did, and loved doing.  I could go on and on, but you get the idea.  More tears have been shed in the last three weeks than had been since August. She is missed so much.  I know it will get better come January but really wish it would come faster.  I find that most people do not want to even bring Sue’s name up, probably out of respect of me, but that too is very hard for me.  I sounds like I am beginning to whine, so I better stop.  

The future is still out there for me.  I have not dug a hole and crawled into it.  I have been spending time with friends and family.  I’m not going to sit back and do nothing, that would not be me.  I keep myself as busy as I can with very little "TV time".  Come January, I am headed south.  Where, I don’t know, but it doesn’t really matter.  How long I don’t know either, nor if I am even going to enjoy it, but that is not a reason for not going. Not being able to share it will be very difficult, I will just have work that out.   Am also looking forward to much bigger plans for the rest of the year.  

In ending, I want to thank everyone again for the thoughts and and for everything you have done for us.  It has been unbelievable the unexpected support that came forward in so many ways, by so many, and continues to.  I will never be able to return it all.  

Wishing everyone a Merry Christmas and a Happy New Year.  A special wish for you is to give lots of hugs and think about how good it makes you and them feel.  Do this because you can.

Chuck


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