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Aug 03 2009

Theresa Varner (December 5, 1943 – August 4, 2008)

Primary Sclerosing Cholangitis (PSC) is not generally considered to be hereditary although instances of it occurring within the same family are not unheard of. In fact, my mom had PSC and also required a liver transplant. She was diagnosed with PSC in her mid-50s, but a review of her medical records suggests that it is likely she actually had the disease 20 years prior and no one recognized it. This is all-too-typical for PSC.

She spent most of the last 10 years of her life far sicker than I have been, since her PSC was particularly aggressive and was joined by PSC’s typical partner-in-crime, ulcerative colitis. She continued to work full time as the director of the Public Policy Institute with the AARP in Washington, DC long after she could have left work on disability. I lost track of the number of times we tried to convince her to take disability and to focus on getting herself well. Her own physicians had frequently broached the topic with her, but she could not be persuaded. Bottom line, she saw disability as a stigma, and worried that her co-workers and friends might think less of her if she chose that route. She also was extremely passionate about her team at the AARP and was reluctant to leave them behind. Only those closest to her knew the full seriousness of her condition since she had become quite adept at hiding her pain and discomfort.

My mom worked diligently to determine the best place to have her liver transplant and in 2006 settled on Mayo Clinic in Jacksonville, Florida. At the time, not only were they one of the highest volume liver transplant programs in the country, but they also were at the forefront of liver transplant research, had very good outcomes and an incredibly short waiting time for transplant — less than two months. This was critical to my mom, whose condition was deteriorating rapidly.

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With Will on Christmas Eve 2007

By 2006, she finally agreed to take a leave from work in order to relocate temporarily to Florida so she could be close to Mayo where her transplant would be performed. During this time, she lived at the Inn at Mayo Clinic and nearly every day she returned to the hospital for further tests. Her sister, Rosemary Hamilton, and a lifelong friend, Jeannie Robison, each provided round-the-clock care for my mom during this time. Their help was vitally important, because It was clear to all around her that she was getting weaker by the day. Jeannie had been with my mom for several weeks assisting with her care and keeping her company when on Sunday, October 8, 2006 the phone rang informing us that a donor liver was available. We knew this was only the first step in a lengthy recovery, but began to breathe a sigh of relief knowing that at least The Wait was over. It was Jeannie who knocked on my mom’s bedroom door to wake her and to let her know it was time. Jeannie later shared with us that my mom’s first reaction was, “This is great. Now, what do I wear to a transplant?”

The transplant was as close to flawless as I believe is possible. There were only the most minor signs of rejection, the majority of which were addressed by refining the mix of medications she was taking. The change in her condition was dramatic. Her jaundice faded hour-by-hour and she spent most of her time walking the length of the hospital hallway, each time aiming for a slightly more distant goal than the last. She was the model patient.

Just three days following her surgery, everything changed suddenly. I was in the hallway speaking to one of the nurses when Dr. Rosser, her gastroenterologist, appeared. He had been very engaged in every detail of my mom’s care, and had already dropped by several times each day following the surgery to answer questions and assess the status of the recovery. On this day, though, he approached me and asked that I join him in my mom’s room. As we entered, he pointed to the chair at the foot of the bed and directed me to sit down. It was clear that something was wrong, and Dr. Rosser wasted no time getting straight to the point. “I’m afraid I have difficult news to share with you.” We learned immediately that this was an understatement. In conducting the examination of the removed liver following the transplant, the pathologist discovered that my mom had cholangiocarcinoma, or bile duct cancer. Despite the fact that the liver had been removed, the recurrence rate for cholangiocarcinoma is 90-95%, and even that number was worsened by the fact that she was taking immunosuppressing drugs. Dr. Rosser explained that this diagnosis was “inconsistent with long-term survival” which is physician-speak for a terminal illness. He wouldn’t commit to a specific amount of time that she could be expected to live, but he made it clear that time was precious. My mom and I held hands and cried while Dr. Rosser continued to explain the consequences. After deciphering the web of percentages, timetables and treatment options that he presented to us, we understood that she could have as little as six months, and under the most positive of circumstances might be able to extend that to a couple years.

I’ll never forget how quiet the hospital room seemed when he left, or how difficult it was to see and hear other transplant patients celebrating milestones in their recoveries just outside our door. Until you or a loved one have faced a prognosis as grim as this, you never realize how much day-to-day conversation is focused on future events: planning for vacations, planning for retirement, taking time off at the next holiday, the never-ending flow of catalogs displaying next season’s clothes, getting your car inspected, celebrating birthdays. All of it seems so mundane until your future, and specifically the duration of your future, is called into question. Then these inescapable topics become cruel and ironic. Needless to say, this was an extraordinarily hard time for all of us.

However, my mom was not one to wallow in self pity. Far from it. In fact, her immediate reaction upon hearing Dr. Rosser explain her prognosis was to say, “That must have been very difficult for him to do. He’s such a nice man and I wouldn’t have wanted to get that news from anyone other than him.” As was typical, her first response involved how others were impacted by this news. When she finally did focus on herself, she said, “Well, this is actually good news. Now it’s very clear what I need to do. I’m going to resign from my job. I’m going to spend time with those wonderful grandchildren.”

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Reading with Julia, Summer 2008

She lived another 22 months after her transplant. She made that time as enjoyable and productive and meaningful as was possible, given the gravity of the prognosis that hung over her, and the severity of her symptoms which limited her ability to do as much as she wanted. She spent precious time with her grandchildren, Julia and Will. Anyone, even strangers, that ever spent more than a few minutes with my mom knew that Julia was the shining star in her life. She couldn’t restrain herself from bragging about Julia, showing pictures and telling stories. The two of them were literally inseparable. Even in the final weeks and months when mom was bedridden, Julia insisted on sleeping in her bed with her, helping with her bandaged hands and feet, singing for her and reading with her. Will, who was only 3 when she died, has also recently begun to let us know how important Grandmommy Resa was to him. He talks about her frequently and asks when her “genie” will be coming back (it took us a while to realize that her “genie” was her spirit). Will also made one of the more poignant remarks a few weeks ago when he said, “I’m sad because I can’t remember what Resa’s voice sounded like.”

We’re probably all starting to forget some of the details, but it’s hard not to recognize that mom’s “genie” is with us whenever we play the piano, or listen to classical music, or whenever Julia pours tea from a pot. We all miss her terribly, but we see her more often than we expected.

13 comments

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  1. Catherine Varner

    A beautiful tribute, Bill, to your mom – one of the most remarkable and lovely women I’ve had the opportunity to know and a wonderful “mom” to me and extraordinary grandmother to Julia and Will. How fortunate we were to be blessed with her in our lives!

  2. Pete Weisberg

    Bill,
    Sending you a private note as well but just want to reiterate here that your Mom was just wonderful for me to be around during those awkward teenage years growing up in a town that I should probably have never grown up in. Your Mom help to reinforce that there is life and culture outside of UA football and that there were other places for me to fit in. Thanks Theresa wherever you may be!

  3. Rosemary Hamilton

    Thank you, Bill, for all of us who miss Theresa so much for so many different reasons.

  4. Mary Riser

    Thank you, Bill, for sharing your tribute to your mom. I lost my mom to cancer two and a half years ago, and your words help me to remember her final years and her great strength.

  5. shelby mcdaniel

    Dear Bill, our son, Paul, died of a stroke last Sept. and we donated his organs and tissue. Paul was a senior at Christian Brothers University here in Memphis, tn. His heart went to Dallas, his left kidney to east Tenn, his right kidney to New York and his liver went to a man who came to Memphis from Boston. The wait time in Memphis is 48 days vs 306 nationwide. we have heard from 3 of the recipients. You are in our prayers!Paul was 22, a rock climber, http://web.me.com/paulandrewmcdaniel is his climbing website he put together the night before his stroke.

    1. Bill Varner

      Shelby,

      Thanks so much for your note. It’s difficult to describe the respect and admiration I have for families that choose to donate their loved one’s organs at such an incomprehensibly difficult time in their lives. And it’s equally difficult to imagine the gratitude that the recipients must feel towards Paul and the other members of your family who were so generous.

      I looked at both Paul’s climbing site and the Foundation site and was impressed with both. It looks like Paul did more in 22 years than many people do in a lifetime, and I’m sure that brings you a great deal of comfort. I also recognize that you’re rapidly approaching the anniversary of his death. Based on what I surmise about you and your family from the two web sites, I’m guessing that September 14th will be less about mourning the loss and more about celebrating his life and looking ahead to the work of the Foundation.

      I just made a small donation to the Foundation that I hope will help extend the impact that Paul’s legacy can continue to have long after his untimely death.

  6. Becca

    What a moving, inspiring legacy your mother left!

    This Mayo Clinic in Florida sounds like a good idea…hmmm….

  7. Stacey

    Bill,
    I haven’t felt the best today, so
    I spent it reading everything here. Oh, how I have wept, with tears of pain and joy, this entire afternoon.
    Theresa Varner will always be known as one of the most lovely people I’ve ever known. I still remember her kind ways, her smile, her ambition, her lovliness. Your words will carry this into eternity. I know how much you loved you mother. I remember that like nothing else. I shall never forget.

  8. Jeannie

    Bill, I have just now read your wonderful tribute to Theresa, so naturally I am writing this through some tears of joyful remembrance. That time with Theresa at Mayo was profound for me. I’ve never known anyone so brave. She exhibited incredible grace under pressure! Her spirit, mind, and wit were indomitable. She was unfailingly kind, generous, and present with us. I think she still is. Love you.

  9. Jeannie

    Oh, and it just occurred to me, Thursday (Oct. 8) is the day she got the transplant — a rebirthday of sorts.

  10. Janet Ulmer

    Bill,
    Your mother and I were best friends, in 7th through 12th grades. We only saw each other a few times after high school, although I saw Rosemary in 1997. I live in California and I always thought about calling and maybe arranging a visit, but we both were “so busy…”
    I am so sorry about her death, and so sorry that your children will grow up without their wonderful grandmother.
    Your story is beautifully written, though very sad. Theresa must have been very proud of you.
    If you ever feel like hearing some accounts of how we had fun during the years I knew her, send me an email, and I will write again.
    My best wishes to you and your family.
    Janie Elfenbein Ulmer (my legal name is Janet, but I am Janie on the east coast).
    julmer@macnexus.org

  11. Joyce Miller

    Bill,

    Your tribute to Theresa was beautiful. I know she is still looking down at those wonderful grandchildren, especially her beautiful Julia, and laughing at all their antics. She will be forever remembered by many friends from school, work, and home.

  12. Shelby McDaniel

    Bill, It has been awhile since we commented. Since then Our oldest son Ben,30, has disappeared in a cave dive at Vortex Springs, Ponce DeLeon, Fl. August. 18, 2010. We have been unable to find him. You can go to Ben’s Vortex on Facebook and read about him. Please let me hear from you and how you are doing. Thank you for your contribution to Paul’s foundation. Also, you can go to http://www.maplegrovefarm.net to see what we do here on the farm.
    Shelby

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