by Ann Haehn
(In A Mother’s Tale, Ann Haehn tells of her daughter’s five year trial as her essential thrombocythemia progressed aggressively to myelofibrosis with complications. She talked of Genny’s life, of her own pain, despair and faith and the growing hope that a stem cell transplant, with all its risks, represented a path out of disease. Today Genny is in hospital, at the early stages of her stem cell transplant, in isolation but not alone. Here is Part Two of Ann’s story.)
It is 5 a.m. and I am roused by the night nurse coming in with a sheet of paper that reflects Genny’s counts – numbers that we anxiously await after midnight blood draws, revealing to us engraftment progress of Genny’s matched unrelated donor (MUD) stem cell transplant.
We have nicknamed the donor “Hans” because although we have not been told so, we have convinced ourselves that Gen’s international donor is from Germany.
Some days the counts are up; some days the counts are down, and unfortunately, my own emotions seem to follow suit. One of our physician assistants, Bryce, has warned me not to follow the numbers too closely, as it is apparently normal for counts to go up and down. There is nothing normal about this entire experience, and being the stubborn, obstinate woman that I am, I have decided to ignore Bryce, albeit very politely.
As I sit down to write this article for MPN Forum, it is still dark outside. The daily bustle of hospital activity has not yet begun, and I am thankful for this quiet, sanctified time to be alone with my thoughts. I feel the sheer exhaustion of being in the early stages of my daughter’s bone marrow transplant (BMT) journey.
Twenty days in and we’ve been told Genny just completed the first mile of a 26 mile marathon. The analogy feels, quite frankly,
daunting. And so I am tempted to be selfish in this article and write about my feelings as a mother. . . to journal out loud about the mental, spiritual and physical challenges of being a primary caregiver. There is a lure to disclose the range of emotions and fatigue that caregivers in isolation experience, especially because there seems to be such dearth literature available about this aspect of the transplant expedition. But I think the caregiving topic is a story for another time. And so I have settled within myself that this update is about how Genny and all like her must run a marathon that the doctors tell us has just begun.
Running is very much a solitary sport. And while Genny is surrounded by a highly competent medical team, as well as a loving support group (aka “coaches,”) the realization hits me that she must do what all participants in a marathon must do – she must go the distance on her own two legs.
I am somewhat comforted by the thought that Genny is descended from a persevering lot of both German stock and American pioneering women. I need only reflect on the tenacity of my own mother, grandmothers and great-grandmothers to reassure myself that Genny has the stuff needed to endure this type of marathon.
Still, a bone marrow transplant is not easy . . . don’t let anyone tell you otherwise. To go into this experience, you, as the recipient of another’s life-giving stem cells, must have solid resolve. You must want and demand within yourself more years to live on this earth. You must pull from deep within yourself all that you are made of, for the mental and emotional battle is as challenging, if not more so, than the physical battle. You must become a warrior.
Well, Genny is certainly a warrior princess. I intentionally use the term princess here because Genny has always been a girly-girl
and a tiara would be well-placed upon her crown.
She is also an emotional being, willingly expressing her needs, desires and wants, and when quite young, throwing temper tantrums after not getting her way. Little did I realize thirty-three years ago how much that stubborn desire to have her own way would become her salvation.
As an example of Genny’s obstinacy, every day while in isolation she willfully makes herself get up out of bed to shower, then to walk her laps, and then to sit in a recliner. Why is this remarkable, you ask? Well, if you have to ask, then you’ve never traveled down this bone marrow transplant path. We’ve been told by the nurses the majority of transplant patients refuse to rise from their bed for days when they are neutropeniac (blood counts bottom out before donor stem cells graft).
These same patients refuse to rise not because they are lazy, or because they are curmudgeons (although some may naturally be so). They refuse to crawl out of their beds because they are exhausted beyond anything you or I (non-transplant, non-Leukemic individuals) have ever experienced. As blood counts drop, the patient feels as though he or she literally have been run over by a truck.
So the very fact that Genny got out of bed, even on her worse days, is a testament to her stubborn determination. Then, too, Genny is resolved not to be one of those “stinky” patients (her term, not mine). This is the princess part. Genny wants to be that cute, sweet smelling bone marrow transplant patient that all the nurses want to care for. Well, cancer treatments have a way of stripping a young woman of her cuteness . . . of her femininity.
Bone marrow transplant conditioning is an ugly beast that forces its neutered, androgynous shape on every patient. And a young woman, no matter how deep or shallow you may think she is, still wants to see a woman’s reflection in the mirror. One day early on in isolation, Genny looked at her reflection and observed her bloated body and bald head. She turned to me and said, “I look like a boy.”
She didn’t cry, because quite frankly, she was too sick at that time. But she did look sad. So every day thereafter, Genny would dab a bit of dark red lipstick on her swollen, bloated lips, don a pretty scarf or hat, and dress in one of seven stylish PJs she brought to the hospital. In doing so, Genny reclaimed some of her femininity from that ugly, androgynous cancer monster. It’s the one thing over which she had some control. Quite frankly, I find her swollen, bruised body and bald head to be quite beautiful. I see a gorgeous warrior princess every time I look at my daughter. I see a conqueror.
There are so many challenges Genny faces every day, and yet, I see her tackle each challenge with grace, creativity, and insistent, stubborn resolve. For instance, Genny experiences tremendous tremors which are a side effect from one of the anti-rejection drugs she takes. We’ve been told the tremors will eventually subside, but for the moment, observing Genny in the simple act of bringing a cup of coffee to her mouth is like watching the effects of an earth quake in process. Imagine. What if you couldn’t drink a cup of coffee because your hand shook so much you spilled it all over you? So, Genny attempts to laser focus while drinking but also just puts a straw in the cup. There. Problem solved.
Then, there is the deep pain of engraftment, the initial resistance and then surrender to the twenty pound weight gain caused by edema, the transplant up and down days, the loneliness of isolation, and the absence of family members, especially her young children. There is also the drug induced state of transplant, but perhaps in the end that will be a blessing – in the future, the isolation phase may be just a blur.
Genny has frequently mentioned to me during the past 20 days that she wonders if she is doing the transplant wrong. She has not sailed through this process – she has endured considerable bone and joint pain mixed with a healthy level of anxiety. I try to reassure her there is no right or wrong way of doing a transplant. Every warrior that comes into the transplant process does so with his or her own unique disease, set of challenges and life experiences. There is no good or bad transplant patient – there is only the marathon, and the resolve to run (and even sometimes walk) the race. All Genny has to do is put one foot in front of the other. And she does this each and every day.
I will be back with Part III . . . the next stage of Genny’s transplant journey – and I promise a forthcoming article, whether it be published in MPNForum or elsewhere, about caregiving. I share our story with all of you because I believe in my heart that with this stem cell transplant, Genny has received a second chance at life.
I share because as difficult as a transplant journey is, it is so very worth it and I want to offer hope to others who are considering a transplant. I share with you, dear readers, because I hope you will spread the word that there is an incredible need to increase the bone marrow donor registry.
Genny is so lucky. She had the antigens that are easily matched. But so many others are still searching for their match. Let’s work together to help our fellow brothers and sisters across the globe. And my final, parting words for this article include a simple, heartfelt thank you to 28 year old “Hans.” “Hans” – you saved my daughter’s life – you are a second son to me. Wherever you reside in this great big beautiful world, I pray for special blessings on you this bright, sunny Colorado morning.
Please visit us at www.gennyhope.org.
© 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.