MPNforum Magazine

Giselle Garcia:    Living single with MF  

      by Ann Haehn

Most of us in MPN Forum know Giselle, a dynamic, 38 year old single mother of two teenage daughters. I first met G.G. while I was exploring some of the blog sites about MPN (Myleoprolferative Neoplasm), as I was attempting to do research on my own daughter’s disease. When I entered the MPD Chat room that first day, I was immediately taken by the vibrantly written posts of Giselle and soon began corresponding with her off list.

There was something about G.G. that attracted me to her immediately and when I discovered her age, I felt an immediate kinship with her as she is only four years older than my daughter, Genny.

Giselle with daughter, Luz

As G.G. and I deepened our correspondence, she began sharing pictures of herself with me and what I initially noticed is how strikingly beautiful she is. And yes, she “does not look sick,” does she? But of course, all who have a MPN are accustomed to hearing that phrase.

Over the course of our correspondence, I learned that at the tender age of 25, G.G. was diagnosed with a rare, chronic, and incurable Leukemia called Primary Myleofibrosis (PMF) – the exact same disease my dear Genny has. Unlike Genny, however, G.G. has now battled with this disease for 13 years and has run the gamut of the medical profession in her native country of Argentina, seeking relief, treatment. For the past two years, G.G.’s pMF has been treated with hydroxyurea (HU) to manage her fluctuating blood counts. But as we all know, none of the drugs on the market are a cure for pMF, and eventually, HU quit being as effective.

G.G. told me that she recently switched to the newly approved drug Jakafi, which she takes daily, along with other drugs that help manage numerous complications associated with PMF, including Ischemic Cardiopathy, anemia, liver disease, and hypothyroidism. Like most who have pMF, G.G. copes with many debilitating symptoms, not the least of which are bone pain, incredible fatigue and an enlarged spleen.

What I did not realize when first writing this article, however, is that G.G. lives approximately 1200km from the capital city of Buenos Aires. Why is this distance significant? Because Buenos Aires is where G.G. must travel every 45 days if she wishes to be treated by a MPN expert. For North American readers, that means G.G. must journey approximately 745 miles every 5 to 6 weeks. The distance is not insignificant, especially for a single mum on a limited income, dealing with an encumbering illness like advanced PMF.

Like so many with PMF, including my own daughter, G.G. was obliged to leave her career and employment far too soon, opting for disability in order to manage her disease more effectively. Not only did G.G. need to adjust to a lower income level after going on disability, but also in those first months of unemployment, she was forced to learn to adjust to living a less active life. As I interviewed G.G. for this article, she told me that in those early days of unemployment she felt she was “walking on walls.”

I was used to work and study all day long, and suddenly I was at home all day long, dissabled, sick, feeling bad and lonely, that was worse than death itself!!!, that was “being dead in life”!!

Heretofore, Giselle had led a vibrant and active life that most young women lead – but over a relatively short period of time her illness worsened and eventually, she found herself sitting alone with this silent, sapping disease. And that feeling of aloneness is one of the key themes that emerged as I explored G.G.’s journey as a single mum with PMF.

ing a single mother is a difficult enough challenge—God knows I have witnessed this truth in my own life as a single mother. But as G.G. told me, when you have pMF, “it is twice as hard as being a healthy single mum, for the simple reason that we are not strong enough to cope with the daily responsibilities that carries life and raising children.”

Along with financial woes and single parenting, other challenges arise including dealing with the physical and emotional fallout that comes with PMF. Over the past year I have witnessed, albeit from an electronic distance, G.G.’s disease advancing. This fact is apparent in her public postings on MPD Chat and in our private email exchanges. Furthermore, while writing this article Giselle told me that her PMF has progressed to the point that managing normal household duties, including simple housework tasks, is too arduous–and yet she must carry on with these responsibilities as she has little to no assistance. Then, too, there is the bone pain that never fully subsides, even with pain medications, and a level of fatigue that is quite simply overwhelming – a fatigue unlike any that a normal, healthy individual encounters. Additionally, G.G. has heart issues and other complications resulting from PMF that she must endure.

The emotional aspect of PMF, however, is perhaps the most incapacitating characteristic of the illness itself, which G.G. labels as the “but you don’t look sick” disease. How many times have we all heard this phrase?

Oh!!!, nobody could possible understand what we suffer and have to deal with every single minute of our lives!!!, only those who suffers the same or a similar disease can understand how devastating is the severe fatigue, pain and weakness, and as MF is a “BUT YOU DONT LOOK SICK DISEASE”!!!!, when people look at us and listen how bad we feel they just say: BUT YOU LOOK GREAT!!! AHHHHHHH!!!!!

And so it seems that many of those in G.G.’s circle, from family members, to friends, to her boyfriend, do not seem to understand the various shades of her illness.

The other people around me (family, boyfriend, friends), can’t manage the fact that MF is a serious disease, and doesnt want to know anything about it!!!, and this is very painfull for me as a cancer pacient, the truth is that people doesnt want to know anything about cancer!!, they freak out and leave!!!.
The inability of G.G.’s friends and family to face the most serious facets of her blood cancer results in her feeling abandoned by those whom she loves most. The frustration of explaining to others what PMF is, how the disease eats away at her own bone marrow, is exhausting, leaving G.G. to ask herself, “Why do I waste my time trying to explain something they don’t want to understand and even know anyways!!! ahahahaha!!! jajajaja.”

Alone with pMF
As a result, G.G. faces all that PMF encompasses on her own. The one person on whom she could depend to provide emotional support was her mother, who for 12 of the last 13 years was the strong, rooted tree upon which Giselle could lean. Unfortunately, last year G.G.’s mother unexpectedly died, leaving G.G. not only grief-stricken at the loss of her mum, but also bereft of the one person who understood and offered her emotional comfort.  So G.G.’s journey with pMF has become even lonelier in the past year.

I feel completely alone with MF, because I am completely alone fighting it!!!. Loneliness means: have nobody to talk to, because they dont like to listen anything about cancer, pain or even death, have nobody to help me with housework (and I can’t afford a maid), have nobody to accompanying me to appts or tests, surgeries, etc, only my boyfriend , have nobody to take care of me and/or do some company to me when I´m hospitalized and when I get back home from hospitalization, and now being unable to undergo the BMT because I have nobody to travel and stay there with me for as long as I need it!!!. Yes, all these facts are what I call: LONELINESS.

I was quite saddened to discover that G.G. evaluates and makes all decisions related to her illness by herself. When making major medical decisions, don’t most of us want the ability to bounce ideas off an individual intimately involved in our life and who has our best interests at heart? And yet, G.G. has no such person in her life who wishes to assume this role with her. She discovered some time ago that others, including her boyfriend, simply do not want to become too involved in helping her handle her disease.

The lack of physical and emotional support is one of several reasons Giselle has opted not to pursue a bone marrow transplant (the only known cure for pMF).

Given all of G.G.’s challenges, I asked her what coping mechanisms she found useful. She indicated that her religion is what makes her strong enough to “bear the emotional and spiritual aspect of living with MF.” She also indicated that she attempts to learn all that she can before she undertakes a new treatment, try a different medication, or undergo a surgical procedure. Additionally, when she is able to, G.G. does exercise.

But what really lifts G.G. out of emotional despair is her art, and as you see from the photos included in this article, G.G. is a very gifted and talented illustrator. She said before she turned to art, she felt she was “dead in life.” Exploring and learning various art techniques enabled G.G. to convert her daily physical and emotional pain into something beautiful, creating a sense of balance in her life and liberating both her soul and her mind.

Most importantly, Giselle’s best coping mechanism is witnessing her two beautiful daughters “growing up happy and becoming young, worthy and intelligent women.”

Giselle told me that she knows the people in her circle cannot cure her. She isn’t seeking medical treatment from her loved ones. Rather, she just wants to be loved and understood more fully. Her desires from her family and friends are simple, really. She wishes to be listened to, loved, hugged, and appreciated and valued for the good person she is. To be cared for a little from time to time when she feels too sick to stand up on her own two feet. G.G. does not want pity or charity. She has incredible dignity and is attempting to live the life given to her in the best way she can for as long as she can. As G.G. so aptly stated, those of us with a disease “just need, want and deserve to be loved just as we are, and we are sick, but even so, we are human beings.”

To all of us in MPN Forum land, Giselle sends her love and a trillion healing kisses.

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© 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.