Tributes to Colleen
... can be found on Legacy.com. To find her page, enter "Colleen McCarthy" in the Search field and choose "Past Two Weeks" (or 30 Days). On Colleen's page, click "Guest Book."

A Letter
This is the letter I wrote last February to the Lung Transplant Committee at the University of Pittsburgh, where Colleen and I went for her week-long evaluation. For five days, I carried copies of the letter with us to every appointment and handed them out to each of the key doctors, who would ultimately be making the decision whether or not to put Colleen on the transplant list, doctors in Rheumatology, Cardiology, Gastroenterology, and Pulmonology. We also handed a copy to the lung transplant surgeon, one of only a select few, who would have been Colleen's surgeon. We learned that, in spite of its length, they all read the letter, to which I attached photographs of Colleen, lest they forget the face attached to the name.

I'm including it here because it fills in a bit more of Colleen's scleroderma story. I'm also attaching the pictures.

and recur, pass and recur. And thus began the physical, emotional, and spiritual journey that now—a long, 22-years later—brings her to UPMC and to you. We, her family and friends, have born witness to the hundreds upon hundreds of physical assaults, losses, medical emergencies, doctors’ appointments, fear and feelings of aloneness that scleroderma has thrown at Colleen unceasingly for all this time. We’ve watched her live with this disease of attrition, day by day, and prepare, more than once, to die from it—with indomitable courage, honesty, strength, and always that smile of hers. Remarkably, I can’t recall ever hearing Colleen complain or exhibit a shred of self-pity—tears, yes, self-pity, never.

            The first doctors Colleen consulted were stymied by her symptoms. Both Lyme’s disease and lupus were considered, but ultimately ruled out. The University of Pennsylvania diagnosed Undefined Collagen Vascular Disease, which later came to be called Mixed Connective Tissue Disease, a diagnosis we understood to be an umbrella for autoimmune collagen diseases. Searching for a more specific diagnosis was prolonged and taxing, as was, and still is, the repeated trial-and-error of seeking the right medications. From the time of its arrival in her life, up until this very moment, scleroderma has required nothing less than herculean patience of Colleen—and heroic acceptance.

In Year 3, Raynaud’s came to stay. Year 4 brought a diagnosis of Adult Still’s. Year 8 hospitalized Colleen with acute pericarditis. Commonplace were mouth sores, high fevers, night sweats, swelling, pain, backache, and bronchitis.

Colleen continued teaching a full-course load and raising her children, never stinting on family vacations or fun of any kind, never missing her daughter’s school plays or her son’s karate competitions, never forgetting one of her many nieces’ or nephews’ birthdays. If you asked her how she was doing, invariably she’d say, “There are good days and bad days.”

In Year 12, Systemic Scleroderma was diagnosed and Colleen was given a 5-year prognosis. That was 2002—ten years ago.

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A few years prior to that prognosis, Colleen began doing yoga, which she fell in love with immediately, in spite of the daunting contraction and stiffness she faced from years of scleroderma. Feeling her body unfold, millimeter by sometimes excruciating millimeter, was a joy beyond measure for Colleen. Her mantra: “I want to touch my toes, I want to touch my toes.” My sisters and I began envying the muscle definition developing in her upper arms. She practiced yoga daily, both at home and in the studio. Her example inspired me to find my own yoga practice. And I watched it inspire other students when the time came that Colleen had to start bringing her oxygen tank with her to class.

During Years 13-15, heart complications meant hospital stays and eventually a pacemaker. Colleen joined a clinical drug trial at Robert Wood Johnson Scleroderma Program in New Brunswick, a two-hour drive from Colleen’s home at the South Jersey shore. The program’s Dr. Vivien Hsu becoming her primary scleroderma doctor at that time.

Year 16 marked a watershed. Colleen began oxygen therapy for routine housecleaning, for exercise—yoga, outdoor walking, treadmill—and for sleep. By the next year, Year 17, she was on oxygen 24/7. The good news was that she had made it past her dire 5-year prognosis. The bad news was that she was now permanently tethered to oxygen equipment.

By this time, Colleen had moved from classroom teaching, which had become too difficult physically, to becoming head of the school library, a role she loved. All those books. All those potential young readers. Outside of work, she began travelling, singlehandedly making all the necessary O₂ arrangements with airlines and with her many destination points, including a most ambitious journey to Ireland, our ancestral home. She also began co-teaching a hatha yoga class at at her local Gilda’s Club and, looking ahead, trained to teach Chair Yoga as well.

            Year 18. Colleen was diagnosed with Hodgkin’s lymphoma. She made it through six months of chemotherapy, lost her hair, and wore cute hats. I never heard her lament aloud about her lost hair nor, before and after cancer, about her premature aging from scleroderma—beauty blows that would take most women down.

            The cancer went into remission and Colleen resumed travelling—until she no longer could. Two years ago, in Spring 2011, she came to visit me here in Santa Monica. We went to the theater a few nights in a row and during the day made our final preparations to leave for Yosemite, a six-hour road trip we were over-the-moon excited about, Colleen’s O₂ needs already arranged and taken care of by her. But Colleen suddenly got very sick with some kind of bronchitis and immediately had to fly back to New Jersey from California.

            For the entire 22 years she has lived with this disease, Colleen has pushed the outside of its envelope. I have watched her need to test the edge each and every day in order to know her limits so she could exceed them, to live her life without pulling back one second too soon. This has been her modus vivendi even during this past year when her world took a steep nose-dive. Dr. Fredrick Wigley, head of the Johns Hopkins Scleroderma Center, in conjunction with Dr. Stephen Mathai of JH’s Pulmonary Division—two remarkable and dedicated physicians—tried everything to level off the precipitous drop in Colleen’s function in order to get things trending back upward for her. No dice.

            Colleen’s world has narrowed pretty much to her sweet yellow house with the massive white oak in the backyard. Her life includes a wheelchair now and Colleen has to ask for help a whole lot more than she wants to. And the O₂ can’t be cranked up any higher.  Is every day for Colleen like being on Mt. Everest, in the thinnest of air, with no oxygen mask? Probably. We try to comprehend what it’s like not to have been able to take a deep breath—for years. We can’t comprehend this.

            Hardest for Colleen to accept in the past 20 months, though, might be the loss of yoga, which was integral to her daily life and sustained her physically, emotionally, and spiritually for more than a decade. She talked to me last summer about knowing that as each day passes without being able to “get on the mat,” her hard-won elasticity and ability to touch her toes was slipping away.

The heartbreak was plain.

           

            In recent weeks, since Colleen was approved for a transplant evaluation, I’ve dared envision the very best—a new pair of lungs for her, lungs that stick around, soft air-filled lungs that Colleen can fly with for however long—a  year, two years, five years, ten? I’ve dared envision her completely untethered from the oxygen machine, miraculously walking with a lightness in her step again—her yoga bag slung over her shoulder perhaps—and her blissfully taking a series of slow, down-deep breaths. I also envision other outcomes.

            My family and I know that Colleen could be in no better hands than yours. Godspeed in your evaluation.

Deep gratitude,

Mignon McCarthy

FAMILY SUPPORT TEAM	Proximity to Colleen’s Home
Suzanne McCarthy, mother, Ocean City NJ	10 min
Camille McCarthy Nickles, sister, Ocean City NJ	10 min
Leslie McCarthy Phillips, sister, Ocean City NJ	10 min
Kirsten Wenzel, niece, Ocean City, NJ	10 min
Dan McCarthy, brother, Ventnor, NJ	20 min
Sean McCarthy, brother, Mays Landing, NJ	20 min
Chelsea Di Pilla, daughter, Margate City, NJ	20 min
Ben DiPilla, son, Atlantic City, NJ	25 min
Kim McCarthy, sister, Boston, MA	6-hr drive, 2-hr flight
Myself, Mignon McCarthy, sister, Santa Monica, CA	5½ hr flight

Devon Road wearing Cinnaminson Pool Swim Ankle Band

At Kripalu Institute, Stockbridge, MA

 for a residential Yoga Retreat

Mom & Col

Visit to Santa Monica 2006

Rhode Island Christmas

Danny, Camille, Sean & Colleen

In the mountains above Santa Barbara

Painted Cave Road

Sausalito, CA  2007

Colleen Emcees Mom's 90th Birthday Party

August 16, 2012

Colleen, of whom there has only been one and shall never be another, my beloved sister and friend, who came from light--from the Source--has now, last night, returned to the light. Or that is my hope. We are a family in pain, but take solace in knowing Colleen's suffering is no more. I would crawl on my hands and knees in the desert for a a thousand days and nights and more if that would bring her back. But that is not an option. I don't know why. Our mother says maybe we're not supposed to know why. This grief lay in wait for us who deeply love Colleen from the moment Colleen's wonderful blog began. Grief at the ending we hoped would never come, never close in. Dear Colleen, I hope you don't mind this addendum to your final entry. I just looked at its date. You last wrote exactly one month ago today. There is a hole as big as the universe here without you. Please let me know, somehow, you're still close. Forever yours, Mignon

The Last Page

It's been weeks since I last posted.  I have 3 unfinished posts that I just didn't have the energy to finish.

Plus, the ulcers on my fingers hinders typing so I'm using a stylus.  Takes forever. I'm whining which I've been doing lately.  So, I've decided that its time to give up my blog.  It served me well as I moved through these last challenging 7 months.  It gave me the opportunity to share my experience, to focus on the comical in the midst of "not so funny".  My thoughts are more muddled, now.  I'm rarely leaving home, my breath has weakened and I tire very easily.  It's been quite a journey looking for the cure these past 20 some years.  You name it, I tried it.  Did any of it work?  Well, I made it this far.   I was blessed with many good days, adventures, teaching, the kids, and many wonderful friends.  Now, this part of the story ends.  But, I still breathe ...in and out. Thanks for joining me on this part of my journey.

"Waking up this morning, I smile. Twenty-four brand new hours are before me.  I vow to live fully in each moment and to look at all beings with eyes of compassion."  Thich Nhat Hanh

Valerie Harper

What a role model! Valerie's interview with Meredith on TV tonight revealed a woman of strength, forward thinking and love. She didn't sugarcoat the gruesome challenge she faces but shows her determination to live in the present with a positive attitude. She has her moments of fear but she's not wallowing in her circumstance. Each day is a new day, roll baby roll. Now, she's out there on the dance floor. I'm blown away.
Valerie's comments about keeping notes and records is a great idea. I've done it for years though I would ask one of my sisters to take the notes. I would often feel like a "deer in headlights" trying to take in what doctors were explaining to me. I also keep a old fashioned 3 ring notebook with copies of all my tests. It does give you a feeling of control. And, there is so much information to absorb, the notes become invaluable.
While listening to Valerie's challenges, you realize that so many of us have obstacles to battle and we all must face death. Try to take solace in that, make the most of your day, and breathe..in and out

Colleen is smooth to my messy. Even when we went to Pittsburgh for Colleen's lung transplant evaluation, her hair was shiny and silky-looking, although she didn't think so. She's timely in her cuts and color. She goes a lighter shade of blonde in summertime. She's got it down, including the blow-dry. In spite of her unfair share of "the thousand natural shocks that flesh is heir to," including losing all her hair to chemo five years ago as she mentions, her hair has remained enviously thick. Me? I'm beauty salon phobic. Do not like sitting in front of the mirror for an hour (or more). If I go twice a year to the "beauty parlor," an outdated phrase I can't seem to shake, that's good for me. Of course, the cost of a cut and color in this town contribute to infrequent visits too. For instance, a haircut from stylist Sally Hershberger, who's relocated from Manhattan to Beverly Hills, starts at $800. So I remain messy, with years behind me of resolutions to learn how to blow-dry my hair into swinging silk. Or, now, how to use the ceramic wand to create sultry S-waves. I even bought a flat iron some years back. All three hair tools sit nicely in a basket in my "beauty" closet. I happen upon them from time to time and notice the thermal protectant spray from TRESemme I've purchased too. So all the guns are there, I just can't seem to pull the trigger. Colleen breezily attends to her locks. Myself and my hair, on the other hand, get all in a tangle. Viva la difference!

Ode To The Hairdresser

Throughout time and around the world, women fuss over their hair. We cut it, we color it and adorn it with beads, ribbons, shells or whatever we think will enhance our beauty. We do it to look good, to feel good and attract someone special. Thus, the importance of the hairdresser. It's hard to find one and it's hard to give one up. Thankfully, I'm not one of those who needs to direct every snip. Except when I lost all my hair during chemo treatments, it grows pretty fast. So, I don't worry too much over a mishap and I'm always open to change. Often times the hairdresser plays the role of the therapist, listening to our woes about lovers, jobs, children, our self-image. It's hard to give one up when he/she is someone you depend on to make you feel good in these many ways. No doubt you've surmised that I have to change hairdressers. The trip out to Mays Landing takes the wind out of my sails. Leanne, my all time favorite "artist," is a tough one to let go of as she does it all creatively, with a listening ear and positive attitude. Thanks, Leanne.