International MPN News, Science & Opinion

Tell a story…

Lady Gaga and My Life of Crime…

Mary Ann Farley is a singer-songwriter, a graphic artist with a store on Esty, a writer…and a woman suffering from ET and complications from her MPN, including a severe jaw bone infection nd chronic pain. Dx’d in 1999 she developed Budd Chiari in 2002, suffered a life-threatening hemorrhage and today regularly takes Coumadin, Hydrea and painkillers…and continues to create art and music. (Ed.)

by Mary Ann Farley

Lady Gaga is everywhere. When I scan the channels there she is–in yet another interview, another video, another performance, another commercial. And I admit, I can’t get enough of it

But while I’m enjoying the ride, there’s a lingering malaise that’s sitting in the pit of my stomach like an undigested dessert, and I’m getting a tummyache.

It’s strange listening to Gaga, because her music has reignited a love of pop that I haven’t felt in a long time, and I feel something like a teenager again, when music was the sustenance of my existence. But here’s the rub: I’m not a teenager anymore–far from it, in fact–and all that went with my love of music in those days is long gone.

For example, when I listened to pop music as a young person, it stoked the dreams of me doing that myself one day, and so much of what I chose to do was put toward making those dreams a reality. As a kid, I dutifully took my music lessons, and as I got older, I joined bands, developed my songwriting and performing abilities, put my own band together, and hit the road. I recorded and released two CDs, was the critics’ darling, and came close to publishing and record label deals, which always ended up falling through.

Undeterred, I kept at it, but as the years began to pass, an eerie feeling soon emerged, which was this: If my dreams don’t come true, if I don’t end up a truly professional singer/songwriter (who no longer needs the day job), then what will happen to me? Who will I be without my dreams, or worse, without those dreams fulfilled?

For years, even decades, I didn’t allow those worries in, because like any good young person, I thought I would live forever. And I believed, perhaps naively, that provided my heart was in my work, as long as I didn’t sell out, then everything would turn out fine. There was nothing to be concerned about. I worked hard, my music was good, and I was committed. What could go wrong?

Well, what went wrong far exceeded anything that I could have imagined in my wildest dreams, as my health, which was never very good in the first place, took a dive in 2004 that brought me to a full stop. And just like that, it was all over.

While I’ve pursued other creative interests during this time, like writing and painting, and even dance for awhile, music will always be my first love as songwriting is what I do best. But when I became so ill and was racked with such unrelenting pain, there just wasn’t anything to write about anymore, and I knew I was done for a very very long time, maybe for good.

Whether it was creative exhaustion or the inability to put physical suffering into a song lyric (or a combination of both), I knew that my music days, for the most part, were behind me, but I was just too sick at the time to grieve over it, as most of the time, I was just trying to stay alive.

But in the last few months, I’ve noticed that my spirits have picked up, which has led me to pick up my guitar again, right around the same time Lady Gaga began promoting the release of her new disc. While her songs inspire me so, I painfully realize that I’m no longer the teenager who can fantasize that I’ll be like her one day. And frankly, I don’t know what to do with these feelings.

In short, I feel like crying all the time it seems, despite my rebounding spirits, because the days of dreaming about a music career are over. Let’s face it: No record company is looking to hire a 52-year-old pop star.

Some have suggested that I get back into the game as simply a songwriter, but even that takes money (to record demos), hence the realization of another grim reality: I’m flat broke. This illness has wiped me out so completely that I live in a Section 8 HUD apartment, am on Social Security disability, and am in chronic pain most of the time. This is NOT how I expected my life to turn out.

So when I see Lady Gaga in all her glory, talking about how she “stuck to it” to achieve her dreams, I think of the millions and millions of other aspiring performers who also gave it their all, sometimes for their entire lives, and have ended up with absolutely nothing, other than some wonderful songs that no one knows or cares about.

On a positive note, I’m so skilled as a songwriter that I no longer have to hone my craft for a lifetime in order to pen a tune. Instead of dreaming about it, I can pick up the guitar or sit at the piano and just do it, provided the inspiration is there, which is a BIG proviso, by the way. Without inspiration, I’m no better than a no-talent hack with nothing to say.

But the negative note seems to be ruling the day, it seems, for at least this day. I just heard a passing car blasting Gaga’s “The Edge of Glory,” which is an edge I sat on for a very long time. The scales just never tipped my way, and there’s a giant ache now where my dreams used to be.

Maybe it’s time to grieve for them, as I gave up everything to have them…marriage, children, and careers in other fields. I went for it 100 percent without a net, and now I’m splat on the ground after having fallen off the wire.

“I don’t regret it—not a bit. But I feel just so so sad.”

(That’s Mary Ann singing her song Life of Crime, accompanied by a montage of her photographs — except for the last famous shots.  “I wrote this song over 10 years ago, when I had to drop my health insurance due to cost, during a time when I was very sick. When I’d get the doctor bills, I’d simply throw them in the trash, and soon began to feel like a criminal. Without doing it intentionally, I ended up writing a song that I’d later realize was about revolution, sweet-sounding as it may be.”

The binder goes everywhere…

by Emily Doering

“At 18 I was a typical college freshman. Happily and healthily being the semi-irresponsible person I was supposed to be at that stage of my life. That spring I started getting lots of headaches and had HUGE bruises on my forearms. I went to my GP and after a brief side-trip to misdiagnosis-land, it was determined that I should see a specialist. I started seeing a hem/onc, and after a quick and painful bone marrow biopsy, and not so quick, almost as painful waiting, found out that I have essential thrombocythemia (ET). Big long words with no meaning. A quick trip to Google later and I was slightly more well-informed. Being 18, I didn’t take it terribly seriously, and didn’t want to feel labeled. So, what’s the logical thing to do? Ignore it and it’ll go away. Kind of like “if I can’t see you, you can’t see me”, the typical three-year-old’s hide-and-seek theory, applied to medicine. Unfortunately that doesn’t actually work.

I was first prescribed Anagrelide, and was on anywhere from 0.5mg/day to 7.0mg/day. I had lots of side effects with this including headaches, heart palpitations, dizziness etc. If it could be found on the label as a possible side effect, I probably had it. I am lucky to be in the 50% that cannot tolerate it. So in addition to not wanting to recognize this issue in the first place, I was able to almost get away with not taking my meds by emphasizing how bad the side effects were.

After awhile of not taking my meds on time, or sometimes even not at all, and having LOTS of complications, I came to realize that I was being pretty silly. Shortly thereafter I got a new doctor who was more familiar with ET patients, got a new prescription and started taking my meds…almost regularly even!

I still had complications from time to time, resulting in pheresis, and dosage increases in my meds, but instead of being apathetic, and letting “whatever happens happen.” I became an active patient. Managing my health is not only the responsibility of my doctors, it is mine as well, and I came to accept that I could be a partner in my own health, rather than a passive victim of my condition.

 I am now extremely involved in my treatment to the point where my doctors probably dread seeing me and my now-infamous binder. The binder goes with me to all of my doctor’s appointments: Hem/Onc, GP – doesn’t matter. The binder goes with me. It has every piece of my medical info I can get my hands on plus questions I may have, plus articles I’ve run across that I want my doctor to look at, etc. I have accepted that this is part of my life. I have setbacks occasionally, but mostly I just roll with it.

When this started I was so afraid that I’d be labeled as “the sick girl”, that I made myself sicker. It took me awhile to figure it out…but I finally realized that these diseases are only a small part of us. They do not define us as people. What defines us is how we handle the setbacks that may come along with it.”

( Founder and CEO  of Santa Fe Productions ,Anthony Tiano, has spent over 30 years in public television and radio. He served as president of KQED San Francisco, KNME Albuquerque, WHA Madison and KETC St. Louis.)
 

I’ll take what I have…

by Anthony TianoIi

In May 2002 I had just returned from a scouting trip for a film we planned to shoot throughout India.  The trip had been exotic and great fun but I began to feel tired and sluggish as I returned.  I felt increasingly weak until I was taken to the emergency room at the University of California San Francisco.  After testing, the medical team there found a parasite called Giardia in my system and put me in the hospital.

Later that evening they asked a hematologist to take a look at my blood sample to see why my Hgb was so low.  We got the results a few days after I was released.  When Dr. Lloyd Damon spoke with my wife Kat and me about the results of the test, neither of us heard the word “cancer” but we both wrote it down on our note pads.  When we left, we heard Agnogenic Myeloid Metaplasia but were happy believing “at least it isn’t cancer!”  Well, it was.

Once we had processed the information and accepted that this blood disease was real, I asked the doctors at both UCSF and Stanford Medical Center who was the most knowledgeable physician in the country on this rare blood disease.  Everyone pointed me to Dr. Ayalew Tefferi at Mayo Clinic in Rochester.  So, I made an appointment and we flew to Minnesota.

Over a period of three days, Dr. Tefferi did all the tests and recommended that I be put on three drugs:  Flouxymesterone, Prednisone and Procrit.  That combination kept me living a normal if a bit less energetic life for the next 9 years.  I continued to play tennis, golf and lived a fairly normal and active life for a guy in his 60s.  But, during that time I had a total of 18 transfusions with one or two units each time.  Other than that life was pretty normal.

Through this time I realized that my spleen was growing from something I hadn’t even known I had to, first a rather unpleasant looking lump in the middle of my belly and over the next several years to the size of a soccer ball.  In 2012 I look for all the world like the pictures you see of women in their last trimester of pregnancy.  This massive spleen interferes with a lot of my activities.  I now only remember golf and tennis and as it goes on and my blood level hovers around Hgb of 10, I don’t have much energy to do the exercise that I know is so important to my good health and wellbeing.  I keep trying but it is more difficult each month.

In October 2010 after I had moved from San Francisco to Albuquerque, NM, my GP sent me to a cardiologist who listened to my heart and reported that I now had a leaky mitral valve.  While he never confirmed that it could have been related to the almost ten years of anemia I had been suffering, statements by other physicians made me consider this as a very real possibility.  I’ll leave it to the MPD specialists to weigh in on the causes but no one in my extended family has had any heart issues and I’ve been pretty active most of my life so it is strange that it would occur after the MPD diagnosis.

I expected to do the surgery at Presbyterian Hospital in Albuquerque but the surgeons there were unwilling to do the surgery because of the reduced platelets and anemia caused by the myelofibrosis.  They referred me to either The Cleveland Clinic or Mayo in Rochester.  We visited both medical centers and simply found Mayo Clinic to be easily the most user friendly and accommodating.  I had the valve repaired on Valentine’s Day 2011.  Rochester in February is not where you go for a vacation but they did a great job and I was out and on my way a week or so later.

As I was making arrangements to go to Rochester, my GP suggested that I have a fistula put in my left arm in the event that I would need dialysis following heart surgery.  Several of my doctors said dialysis was a strong possibility after the heart surgery.  I saw a renal specialist since, as he said, “It is very likely that the dye they will use to highlight the valve issues in your heart will damage your kidneys and you may be on dialysis afterwards.

“Afterwards.”   A simple and easily understood term but what it means is “forever,” or “for the rest of your life unless you get a transplant.”  I’m did not fully comprehend the implications.  But, in retrospect, it wouldn’t have made any difference.  I was on a path and there really was no viable alternative.

And that is how it happened.  From AMM to heart valve issues, to failed kidneys and now to a spleen that measures over 30cm, interferes with just about every meal, causes chronic diarrhea and has certainly changed my physical appearance.  I look Pregnant.  Not what I had assumed would happen to me in my golden years.

In early 2012 the same cocktail of medications is keeping my anemia at bay so, for the most part, I can do much of what I had done before the diagnosis.  And the dialysis actually makes taking the medications (including a weekly shot of Epogen) easier since it goes into the plastic tubes and not into my arm.  I save my arm for those 15 gauge needles we use 5 days per week to take my blood out, clean it and put it back in.  The daily process takes about 5 hours from start of setup to the end of cleaning up and putting everything away.  It is almost a second full-time job but it keeps my blood clean and keeps me alive to live a wonderful life with my wife, family and friends.

It is possible that the heart issues and the MF were unrelated.  It is possible that my kidneys would have failed without either the MF or the heart issues.  But until the diagnosis of MF in 2002, I was active and healthy and living what I assumed was a normal life.

Now that the medications are keeping me stable, the most inconvenient part of my life relates to the massive spleen and the constant pressure it puts on the rest of my body.  Because of its size, eating is very different from what it had been.  I now have a constant but low-grade set of pains where it seems to be expanding.  I’ve grudgingly accepted what it has done to my appearance – anything but sexy.

Anthony with Denise Taylor working on Stained Glass for a public television program

We have explored ways of shrinking the spleen:  we looked into radiation treatments but the radiologist we saw said that it was not likely to do much to improve the size and it would damage other organs in that abdominal cavity.  Since I am trying to get on the list for a kidney transplant, I don’t want to take the risk that other organs will be damaged in a way that could make a transplant difficult or impossible.

If you search around the Internet (an activity my doctors warn me about) you’ll find places where they suggest milk thistle tablets to shrink the spleen.  I tried them for about three months and noticed no shrinkage and no change other than a reduction in my bank account.

We have looked at splenectomy and the prognosis is not much better.  Since the spleen is an important part of the immune system, removal might make me more susceptible to a range of diseases that most people don’t much worry about.  And there is the recovery period of several weeks (no laparoscopic surgery possible here because the organ is simply too big).  Other drugs such as Ruxolitinib won’t work because they really knock the Hgb down and with my low level, that just doesn’t seem to be a possibility.

So, it seems I’m the round guy with the very hard stomach (but no six pack) and the low energy level who spends about 25 hours a week caring for and being cared for by my home dialysis machine.

Given the alternative, I’ll take what I have and keep searching for something to make life a bit more comfortable.  So far it is elusive.

Take me back to the Contents

© Mary Ann Farley, Emily Doering, Anthony Tiano  and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from the authors  and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to individual authors and MPNforum.com with appropriate and specific direction to the original content.



Comments on: "Tell a story…" (3)

  1. Hi Mary Ann, long time no see. I don’t always agree with you, but there’s enough mutual goodwill left over from the List we once met for us to remain good net friends. I can’t give you much for your ‘Lady’s’ music. I’m way too pre-bop, more appreciative of syncopation, understandable lyrics and big bands. A ‘one’a, two’a, three’a —Slide! box step old geezer, but not a Guy Lumbago aficionado quite yet (Emily and our other Canadiens forgive). You are Not a criminal and you can get back up on the wire again and walk the same tightrope of your own views and dreams. We all walk a tightrope from time to time and I suspect that for you, the life you gave up to do it your way wouldn’t have been all peaches and cream. Life isn’t perfect for anyone and you may have fared much better than many of us. Anyway I’ll stop trying to tell you how you feel when you are the one in pain. Just let us help you and in letting us do that, you’ll help us. Best, Arch

  2. Arnie McConnell said:

    Dear Mary Ann: Love the lipstick. I’m sorry that your dreams have been so expensive. Am also happy that your commitment to art is your solace. You’re looking for comfort in the right places.

    Dear Emily: Keep rocking that binder. You’re way too young to give in to any force, particularly a pernicious one. Your tenacity seems to be keeping you sharp. Check out that smile!

    Dear Anthony: Yours is the first Twilight Zone style spleen that I’ve seen thus far. Zhen is smart to feature photos, isn’t he?

    I have some idea of what you must be going through. Tough enough to be in one’s sixties, a time when life seems to silently encourage us to give up the sex appeal, anyway, and then hits us with diarrhea and the big belly to match. It’s a fate that might well be mine someday. That fact that you can own all of this and still find some things laudable in this world is a true inspiration. Shows how worthy and worthwhile you still are.

    Well, at any rate, good-bye and good luck to the folks on this page–at least for this Sunday night.

    Be Well,

    Arnie McConnell

  3. Leeya James said:

    Anthony: You still have a good attitude with all this going on. My husband Eric’s kidneys are presently functioning at 50% and his kidney doctor gave us a warning as well about certain dyes used for tests and to beware of their bad effects on the kidneys. He suggested we consult with him if the issue came up and there would be a different option for someone with reduced kidney function. (i didn’t ask what that option is) Of course a test and heart surgery are 2 totally different things but I am just curious if that’s how it is? We have no other options when valve surgeries are done but to use a dye that will put us onto dialysis?

    Wishing you well – Leeya (wife of Eric dx’d MF 8/2007, Rev/pred & thyroid meds)

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