Susan: An Interview with a Caregiver


How has your loved one’s MPN diagnosis impacted your life?

My husband was diagnosed 15 years ago while we were in our mid 30’s and the only information that was obtainable at that time was grim.  Needless to say, there were tears in the beginning…questions like, will he walk our then 6 year old down the aisle when she gets married?  Will I be a widow before my 50’s? However, as the information and medical treatments improved, so did our attitude towards the MPN’s.  In a way, our lives are so much more rich due to him having this disease.  We celebrate the little things more and don’t sweat the small stuff.  Work isn’t the driving force behind our partnership, it’s quality family time.  We now have two kids in college but remain incredibly close to them at all times.   We founded a support group and truly care about each of the 100+ members in this group, some of the members are as close as family members to us.

Do you feel like you had the knowledge and resources you needed to navigate the various challenges of dealing with this diagnosis.  

15 years ago, there wasn’t all that much information in terms of support around MPN’s.  But now, thanks to the MPN Research Foundation and MPN Advocacy and Education International, we feel like the information and support are just a click away.  Our support group meetings have been invaluable to me in terms of learning more about the disease and talking with other caregivers on how to continue to support our loved one.

What are your biggest challenges in trying to help your loved one?  

I remember back in 2005, we were at a Mayo MPN Conference in Arizona, one of the topics that was discussed was Hospice.  After listening for 20 minutes, I excused myself and went to the ladies room where I broke down and cried. A very wise, elder lady gave me a big hug and said, “Wrap it up.  You can’t show you’re weak to your partner, they need you to be strong for them.  You are their biggest advocate and you are so needed to help them win this fight, now…dry those tears and walk out with a smile on your face”.  I remember it so well.   I thought about what my husband was hearing during this talk and how frightening it must have been for him.  It shouldn’t have been his job to console me.  I needed to be there for him to console him, which is just what I did, thanks to my new friend.  Four years later, my husband had complications with his spleen and he spent 3+ weeks in the hospital.  It was hard juggling young children and being present for him at the hospital.  I knew the best decision was to have the help of friends, family and neighbors take over my role with the kids so I could be the best advocate for my husband.  I needed to be there, at the hospital, helping him navigate the complicated hospital maze.  There were discussions with the many medical team members who were rotating constantly.  My husband was highly medicated and found it hard to tell his story correctly.  There was NO better person than me to make sure his story was being told correctly so he got the proper care.  My kids got hugs and kisses from me at the end of the night, but it was my husband’s life at stake and I’m glad I made the choice to always be strong and present for him.

What thoughts or advice do you have for those just beginning a journey with a partner with an MPN?  

The journey that begins with a diagnosis of an MPN is an unexpected and unpredictable one.  But the only constant is the support that you can provide your loved one.  Being there with them at doctor’s appointments, medical conferences and support group meetings as well as occasionally checking in with them to see how they are doing are among the most valuable contributions you can provide.  Also, you may notice certain side effects of medications that the patient is unaware of such as mood swings, lack of engagement or loss of emotion, and can inform the doctor. It is the job of the advocate to pay attention to these changes and make sure steps are taken to resolve them. If you are a significant other, I believe it is best that you go on this journey together by making mutual decisions on things such as new medications and tests. My view is that every decision has potential positive or negative outcomes and you both have to live with them…so do it together.


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