An Anniversary

One year ago today, 12/11/10, my boyfriend, Ron Clark, and I made a trip to Ann Arbor.  We had originally planned to go to our friends’ open house at their art studio in Kalamazoo, or maybe to roller derby with friends in Grand Rapids, or maybe even try to squeeze in both.  But, in the end, driving 2 hours east to go to a large university hospital won out.  We did not know it, but that Saturday happened to be University of Michigan’s Big Chill, an outdoor ice hockey game, so the town was crowded and there were blimps and planes in the sky above us as we made our way to the ER.  We later learned that this game set the record for the most people at a hockey event with 113,411 in attendance.  The ER was full of drunks picked up at and following the game.  We were questioning whether it was really an emergency, because he had been having symptoms for about 8 months, not counting a very brief remission over the summer, and this was the first time we attempted to do something about it.  We had hesitated even to make the trip, but something had to be done and I had been coached by several people to take him and find out what was going on.

When I first started dating Ron almost three years ago, I was constantly telling him about my downfalls and my baggage (a bad habit of mine).  I remember asking him what baggage he had.  Three major things came to light - 1) he did not have a driver’s license or a car, 2) he had an enormous amount of student loan debt and no degree to show for it, and 3) he had a rare genetic disease that causes tumors to grow on various organs in his body.  The first thing, we remedied quite quickly, since we were in a long distance relationship and I didn’t want to go back to our home town, Alma, every time I wanted to see him.  So, his work helped him get his license back (he needed it for his job anyway) and I helped him get a car.  The second thing, well…who doesn’t have student loan debt?  So, that one was easy.  The third thing, Ron told me not to worry about it.  It was really no big deal.  All one who had been diagnosed with Von Hippel-Lindau (VHL) needed to do was get a full body scan once per year to look for benign tumors and remove them if they became too large.  Piece of cake.  Oh yeah, and by the way, his last scan, he told me, had been about 8 years ago due to lack of insurance.  But still, nothing to worry about. 

Of course I worried, even in those early stages of our relationship.  I read about VHL online and learned it could be serious, if not attended to.  I prompted Ron to apply for Adult Benefit Waiver (ABW) when it opened up in April 2009.  It is like Medicaid, but you don’t have to be disabled to qualify, just poor.  Unfortunately, Ron, working in his minimum wage job, made just slightly over the income limit…like, a ridiculous amount, less than $20 more.  So, he was denied.  Then, I scrambled around, emailing different VHL groups and charities and studies, hoping he could somehow get a scan.  I did not have any luck, and since Ron was not having any noticeable issues, he convinced me not to worry about this.  And I let it go.  I now regret letting it go.

So, we enjoyed some idyllic times together and we loved each other and we created memories and we went on with our lives, like people do.  Because we remained in a long distance relationship until July 2010, our time together was very valuable and this made things all the more intense and precious.  In April 2010, Ron showed the first symptoms of his disease.  We didn’t recognize them at the time.  He attributed his indigestion to some bad pizza, but it persisted.  He had ongoing stomach issues that made us start to suspect irritable bowl syndrome or some kind of food allergy.  And he was so tired, often napping immediately after work and needing to go to bed early.  His job ended up letting him go in July because they wanted to focus the company in a different way and really didn’t have enough work to keep him there.  Once unemployed and without income or potential job prospects in Alma, Ron moved down here to live with me.  The idea was that I would support the two of us while he looked for employment.  He applied for numerous jobs and even had some promising interviews and we loved finally being together every day.  However, during all of this, Ron continued to be tired and to have stomach issues.  It became apparent that for him to even maintain work in the physical shape he was in would be impossible.  In October 2010, ABW opened up again and I made Ron reapply, thinking that now, since he made much less on unemployment than he did with his job, he would qualify.  Again, he was denied because “unearned” income, such as unemployment, is weighted differently.  So, I talked to the Department of Human Services (DHS) liaison we have at my work about whether Ron would qualify due to having a medical illness and I explained about his VHL and symptoms.  I was told he would not qualify unless he was disabled and that VHL alone was not disabling.  Coming up against road block after road block for getting him help, I became increasingly worried for Ron, particularly as I researched his symptoms and his disease more. 

During my research, I came across a resource, the VHL Family Alliance (www.vhl.org).  Through their website, I found the name of a contact person, Wendy Uhlmann, at U of M and I emailed her, explaining Ron’s symptoms and indicating he had treatment at U of M as a youth.  Wendy was very responsive and engaged me in email dialogue.  From the start, she encouraged me to just bring Ron over to U of M to have him checked out where they have his records and some familiarity with his disease.  But, Ron and I were both fearful of hospital bills, so I pled with her as to how we could help him access some sort of funding.  She got me in touch with someone who coached me through applying for assistance through the M Support Program at U of M and we did that in late November.  Then, it was a waiting game for the approval to come through.  And we waited and waited.  A few short weeks can seem like a long wait when someone you love is so sick.  Ron had lost about 60 pounds since April, which was alarming.  But, the scariest part, for me, became feeling Ron’s racing heart beat at bed time.  He would be asleep and I would have my arm around him and all I could feel was the fast and heavy pounding of his heart, which never let up, even when resting.  I was afraid and I relayed this to Wendy.  She, along with some of my friends, convinced me that we couldn’t wait for approval for financial assistance; Ron needed to be seen as soon as possible.

The day of our travel to the ER seems like a weird, calm dream in my mind.  We made arrangements for my brother and sister-in-law to watch our dogs and we went out with them for burgers.  We took some photos downtown amongst the Christmas decorations, somehow knowing that they would be the last before the diagnosis.  We calmly made our way over with bags packed for an overnight stay, just in case.  Having worked in ERs in the past, I fully expected us to be turned away without much workup…afterall, it was just some indigestion, fatigue, weight loss, and a fast heart rate…and he had no insurance. 

The ER folks initially didn’t seem to know what to make of Ron, but could see that his abdomen was distended and was firm in places where it shouldn’t be.  And, he had some tachycardia with a resting heart rate that was over 100 beats per minute.  So, they ordered a scan and the results made everyone start talking to us much more seriously.  They told us Ron had numerous masses in his liver and that he was going to be admitted for further testing.  They said it was cancer.  They wondered if we understood what this meant.  I remember that we were not surprised by this…and yet we were surprised because how can you not be?  I think all along we knew it was the VHL manifesting itself after not being treated for so many years.  And yet we had also lulled ourselves into thinking it was somehow something else, something less serious, more treatable, less lethal, and certainly not cancer.

I look back on that day, the casual morning and burgers and drive over to the hospital, as the last “normal” day we had.  Yet reflecting back on how hard it seemed to get him the right care, all the barriers to treatment and financial red tape and all the research and emails and everything else, along with his symptoms, I realize that things were not normal preceding that day.  They had not been normal for some time.  And I get mad…like, really angry, that it is so hard for someone with a serious health condition to access health care.  And I get mad at myself for not sticking with it when I had first met Ron and making him get checked out sooner.  And I get mad about a lot of other things, too…but those are topics for another time. 

For today, I just want to remember the anniversary that marks the difference between knowing and not knowing an unthinkable thing.  I wish I could go backwards to us that day and just cradle us and tell us what was to come.  Instead, I thank my lucky stars that I still have Ron with me, a year after the cancer word was uttered.  It may not be the life we had imagined for ourselves when he moved down here, but at least he has been diagnosed and is being cared for and we have each other. 

12/11/10 – The Day of Knowing – 12/11/10 – D Day…D for Diagnosis