Jane’s Story

Site created on September 25, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

As most of you know, I have been diagnosed with Myelodysplasia, commonly known as “Pre-Leukemia.” 


On October 1st I start my first sessions of chemo. It is a new protocol of treatments only used in Pittsburgh at the Hillman Cancer Center.  It is two separate drugs coming out of the Mario Lemieux Cancer Research Center. I start out with 5 days medication delivered through an IV drip taking 2 1/2 hours per day. This will start on Monday, October 1st at the cancer center in Indiana PA, part of the UPMC/Hillman campus. On Saturday, I will be admitted to UPMC for 5 days of the second drug administered 24 hours per day. 


The goal is remission.  At this point, the doctors will look for a bone marrow match for a transplant.  When found, I will be in the hospital for at least 30 days, in quarantine, preparing for the transplant.  


This has been a lot to take in, and a very stressful month of doctors appointments, bone marrow biopsies and medications.  


I am still going to work. I had a meeting Friday morning and my co-workers could not be more supportive. I can work flex hours, they have provided me with a safe environment to avoid exposure to germs and will limit my contact with employees.  My immune system is compromised, as my white and red blood cells are very low, as are my platelets, making me very susceptible to infection.  I have co -workers volunteering to run errands, pick up groceries, do my laundry and help me with anything else I may need.  I really do have a village! 


It is very important to me, to try and keep as much of my daily life normal. I like keeping some of my routines. 


So, welcome to my “Positive” and “Encouraging” FB Page.  No negativity allowed.  


And so the journey begins...,

Newest Update

Journal entry by Jane Crawford

I wanted to take a moment to thank you for your prayers and support through my cancer journey.  From August 2018 through today,  you have been there helping me every step of the way.  I appreciate every gesture of kindness, more than you will ever know. The  words of encouragement, lovely gifts including shawls, blankets, pillows, books, items from the Holy Land, Rome, Greece, candy and cookies and the list goes on from areas across the United States. All this kindness helped me through a very difficult time.  
 
I chose this moment to send you a note because at 10:22 pm this evening, it will be one year from my stem cell transplant.  In the hospital they told me today would be my new birthday. I am officially one.  As a side note, I am on my third round of “baby” immunizations. Oh what babies go through! That’s a lot of shots, but I do  like the nurses singing to me and the stickers I receive when I’m done make it all worth it. 
 
On Monday, I was at Hillman in Pittsburgh to get the results of my bone marrow biopsy.  No cancer.  I will still be having bloodwork done every month for a few years  but things look promising.  I was also told the chemo trial  had a very high success rate and soon will be the standard of care for MDS patients.  I could not be happier.  So many people will be helped.
 
Finally, this week I get to call my transplant coordinator to see if I can contact my donor. All I know is he was my only chance and less than perfect match. He lives in Eastern Europe.  I know I’ve mentioned this in the past but my tastebuds have not recovered  and the only food I can taste or smell is sauerkraut.  I have the urge to buy beer and I have found myself  being a bit more stubborn.  I think it’s because my blood type had to change from O+ to A- my donors blood type. I read  A blood types are more likely to be sensitive to COVID-19.  Bummer.  I also found out mosquitoes prefer O blood types and stay away from A blood types.  A win.     The nurse told me my DNA would change as well, and  no one would know it was me at a crime scene. Male DNA.  Too funny.  I wonder if I take my Ancestry DNA test again, will I connect with a new family? Is my twin sister still my twin? If my DNA test sample got mixed up at the laboratory and ended up on Maury Povich, could I be the father? 😉
 
It will take another year to get my strength back.  A new road to go down.  Sending you all my love and appreciation.  Looking forward to the terrible two’s.  
 
Thank you again.  Stay safe.
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