International MPN News, Science & Opinion

Ahhh…The Single Life

AHHH . . . THE SINGLE LIFE

by Ann Haehn

By now, many of you are familiar with Genny’s story and as a result, recall that Genny is a 34 year old single mom to Tyler and Hannah.

Before Genny’s diagnosis of Primary Myelfibrosis in April of last year, Genny was living the good life.  She was a happy young woman who was raising her two children while furthering an active and rewarding career.  She ran 5Ks, hiked the Colorado Rockies, and zip-lined in Mexico.  Multi-tasking was an art mastered by Genny.  She even began dating a wonderful man, Josh, and the promise of love was in the air.

Then, in April of 2011, Genny and all who love her were reminded of the fragility of life.  With Genny’s diagnosis of PMF, disease progression and treatment, we came to understand the true meaning of the First Noble Truth – in life there is great suffering.

When you are a single parent and discover you have an incurable blood cancer, it seems your first worry is for your children rather than for yourself. Genny shared with me (and shared often, I might add) that after her initial diagnosis she was consumed with thoughts that her children would grow up without the loving influence of their mother.

Additionally, as a single mom, providing a financial future for her children weighed heavily on Gen’s mind and quite frankly, still does.   Cancer, drug treatments, and stem cell transplants all take a heavy financial toll on the patient and her immediate family, as well as extended family members.  But when you are single and have no other source of income on which to rely, the financial struggles can be daunting.

It is exhausting enough to be a single parent when you have your health.  The challenges increase ten-fold when faced with a chronic illness such as PMF.  Your body may be crashing, but there is still a career to be managed, laundry to do, homework to monitor, bills to pay, and meals to cook.  There are still the graces to be taught to children to say please and thank you, and to referee disagreements between siblings.  And there is no partner in the house to assist with these parental responsibilities.

There is only you, the single mom.  Well, the merry-go-round of life does not stop spinning simply because you are a single parent with PMF.  In fact, everything seems to spin faster.

I watched as Genny reluctantly came to terms with her disease, finally resolving there was no choice but to step off the gyrating carousel.  And so Gen went on medical disability from work, surrendering to a new way of being.  Gone were the halcyon days of biking and hiking the Colorado Rockies and running 5Ks and 10Ks.  Instead, Genny learned to jog to the new cadence PMF demanded from her body.

She forced down her daily cocktail of drugs and conserved her energy for the essentials in life, and that, quite frankly, was to function as an effective mother.  One of Genny’s favorite mantras is “Cancer does not trump being a mom, and neither does a stem cell transplant.”

And then there is Josh.  There are enough challenges in dating a single mom, but to find out the woman you are dating has an incurable blood cancer – well, I can’t even imagine what went through Josh’s mind last April.  And yet, here Josh still is, standing by Genny’s side, supporting her,encouraging her, and loving her and her children on a journey I am sure he never imagined taking.  I shudder to think how much more difficult Genny’s path would have been this past year without Josh by her side.  So while Genny and Josh are not married, they are a couple, and while they do not live together, Josh is Gen’s helpmate.  Perhaps it is not fair to classify Genny as completely single.

So how has Genny, a single mom of two, managed with PMF and a subsequent stem cell transplant?  Quite simply, she accepted early on that she needed a Village.

Ok, I’m addicted to the iPad Smurf Village game due to my granddaughter’s influence, and as a result I can’t help but extend the Smurf analogy to this story.  The Smurfs have all showed up for Genny.  She has Jokey, Nanny, Chef, Nurse and Doctor Smurfs, and her fabulous Smurfettes.  Family and friends, Josh, work colleagues, neighbors, dance moms and school moms, as well as a wonderful medical team, live in or frequently visit Genny’s Village.  These Village citizens are at this very moment chiseling away, baking, administering medicine, and planting a garden of love and hope around Genny and her children.  Even Papa Smurf showed up in a big way:  without going into too much detail, Genny’s employer, the Trizetto Corporation, supported her in a manner that I have never witnessed from a company before.  Trizetto proved that corporations really can be part of the solution – rules can be bent and even sometimes broken.  Really.  All it takes is a few executives with a compassionate heart and the guts to do so.  And Trizetto executives had both the heart and guts to help this single mother battling with an incurable blood cancer.

If you are single and living with a blood cancer, it seems a foregone conclusion to me that you must have hardworking, dedicated and loving Smurfs in your Village to help you along your way.  As difficult as it may be to do so, please reach out and ask for the help you need if you aren’t getting it.  So many times we receive God’s grace from the generosity of others.  And trust me, those who give of themselves and their talents, also receive God’s goodness just as abundantly.

Additionally, how lucky we are that MPN Forum is a welcoming Village – not just for the patient, but for the caregivers who anxiously hover and watch over their loved one with a MPN disease.  And Zhen, well, isn’t he our wonderful Editor Smurf, banging away on the keyboard, keeping our Village alive and well for next month’s edition.

Take me back to the Contents

© Ann Haehn and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ann Haehn and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "Ahhh…The Single Life" (6)

  1. Linda – my heart aches for your loss. How brave of you to share your story with all of us. Going through the transplant is so difficult as it is and then to have it fail must have been just devastating. Your daughter was a courageous young woman and you no doubt were her rock. Loosing a beloved child is beyond sorrow. I will keep you and your family in my thoughts and prayers. God bless you with peace.

  2. Genny is quite an inspiration to so many others. What a beautiful daughter you have and wonderful grandchildren. God bless all of you.

  3. All true….I’m single…..all I am worrying about is what you said, my children growing up without me…..the thought hurts deep in my soul.

  4. Barbara Kurtz said:

    Always an inspiration. I’m so glad you have taken the time to tell your daughters story.

    • I am a Mom of a 39 year old daughter who also had a blood cancer (AML). She was married but separated. Heather has two boys 15 and 17 when she found out about the cancer. My husband kept the boys while I took her to her appointments for 22 months. We where in Nashville for and after her transplant for about 4 months. Then when she was no longer in remission we came home. We never thought about the bonemarrow transplant that it would not take for good. Maybe we didn’t want to hear it. That was the longest and most horrible trip home from Nashville to Towsend, Tenn. She cried the whole time and so did I. We didn’t talk the whole trip. We coouldn’t. We were so disappointed. But we made it home, and started going to her cancer dr. and hospital about everyday for blood work and transfusions. She never gave up and planned to have another transplant. She never got to that point. When her blood counts started to rise, she thought she was getting better. I knew the truth. Then her dr. started to talk about hospice. She said no. She thought that meant she was giving up. The pain started and we had to go to the hospital for pain control. She still didn’t want to talk about hospice. She came home for the last time about a week before she died. She had a pain pump and slept most of the time. She died in her sleep. The whole 22 months of her battle she was never alone. We had a lot of friends and family who helped me out. It is hard to do for that long of a time. We told her we loved her every day and even when she was asleep. I hope she hear us the last few days. I am sure she worried about the boys. I know she knew we would be there for them and we have tried hard to do that. She died in Nov. of 2010 and it is still hard on me.

      • Linda, I am so very sorry to hear about your daughter, I can not imagine. Your daughter was quite a solider and I am sure that she will never be forgotten as she lives on in everyone’s hearts. One day you will see her again.

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