Friday, June 21, 2013

Wastin' Time

"With the help of God and true friends
I've come to realize
I still have two strong legs
And wings to fly."



Where to begin? It started after a major surgery to repair a hernia in late December. I took my last long run in however long it would take to be better. I was okay, and I was going to be okay, but I just needed to stop a while and take care of this thing. About a week after I was home, shocked at how extreme the recovery was, I found this lump in my neck. That didn't go away. It was hard and painless and I worried about it a bit, because my surgery had been in my lower stomach/ groin area - which is certainly nowhere near my neck. Over about 10 weeks I saw 6 different doctors, all of whom believed my lump, which was an enlarged lyphnode, had nothing to do with my surgery. Meantime, I had been given the all clear to run, but after a few triumphant weeks, I became weaker and winded and my ability slipped away. And I itched dreadfully - all over, but particularly on my upper body - my scalp and my neck. It was a deep itch, an urge to scratch my brain, that just wouldn't be satisfied. They told me to take Benadryl. I learned to live with it. After 8 weeks, more lumps came, on both sides of my neck and into my collarbone. Cervical subscapular lymph nodes. A couple doctors were concerned, others were not. Taken as a whole they conceded my symptoms were wierd, but that I was probably okay, and that it was just odd timing with my surgery.

On my end, I feared that the weakened state of my immune system had allowed something latent in me to bloom - specifically, lymphoma. I spent many hours reading and researching. And months of fear - feeling as though I were being shadowed by a ghost. Waiting at every turn to steal my freedom and my youth and my health away long term. It got so I almost wished I had cancer, so I could stop wondering what it was. Something was obviously wrong that my body was reacting to - and the longing to know whether it was a big something or a little something was intense and deeply frustrating. Every blood test came back normal, as well as CT scans of my chest. I was forced to cancel MTD for a couple of reasons - but this was the main one. I had no energy, was scared and depressed, itching like mad and helplessly watching as some process took over my strong body, and seemingly took it away from me. I ran very short distances at very slow speeds. Walking up the stairs with a load of laundry caused me to double over and grab my knees at the top. How could I guarantee that I would be healthy enough to put on a race? I would not do my race half-assed - it would be excellent or it wouldn't be at all. That was one of the hardest decisions of my life. But I was relieved once it was done - I could focus on answers and not on my obligations to others.

The longer things went on, the more concerned my primary doctor grew and the time had come to have a full excisional biopsy. So at 18 weeks after I had first discovered the enlarged node, I had 4 of them removed through a 2 inch incision in my neck. I only waited 2 days to hear - benign. There should have been a sense of relief, but in it's place was anger and fear that I would never know. That I would go on itching, helplessly watching these lumps grow, a shadow of who I was - waiting to die, or not die, of some mysterious disease. Who knew? None of my doctors did - and the chorus of "your fine"s  took their toll on my heart. I was not "fine" just because they couldn't figure it out.

And then something happened. My (still quite young) mother has been struggling with arthritis and crippling pain in her back for the last couple of years. She finally went to the last of the last specialists who told her there was nothing they could do for her. This was it - the rest of her life in pain. She's only 60. When she told us the news, a fierce anger rose up in me. This was NOT going to be my life. For 5 months I had been sitting around, waiting. Waiting for something to come that may or may not be threatening my life. Waiting for a new symptom or to mysteriously get better. Waiting to be 100% before I put one foot in front of the other again. But I wasn't waiting - I was wasting. I was not myself - my life had grown miserable and the window of joy had shrunk to a pinprick of light. I resolved to stop the madness right then and there. To stop waiting on something that might never come. And realize that I am healthy TODAY. I can walk TODAY. I am alive TODAY. I may have lost a lot from my body, but I haven't lost everything - and I'd be damned if it all slipped away. If I rolled over and played dead. I was going to stand up and fight back against whatever this thing is that has made me itchy, tired, weak and lumpy. I wouldn't give it more of my brain space. They are telling me I am fine, so I am going to believe them. TODAY I am fine. TODAY I am capable. That's all I know, and until soemthing new or dramatic happens, that's all I want to know.


Last week I spent a few days backpacking the Appalachian trail just north of the Smoky Mountains. I summited 6 mountains. I carried my house and bed and kitchen on my back. I covered 35 miles in 44 hours with 2 full nights of sleep mixed in there. I walked through hail and electrical storms and fog and heat. I went alone, without the support of my family, and hired a guide for company. I ate breakfast with strangers and flew on a plane without someone to administer Dramamine. This trip was as much about a little getaway adventure for myself as it was about proving something. That I still have two strong legs, and wings to fly. And until they are forcibly removed from me - I will use them. I will live my life, damn it. Without fear of what may come. Because what comes for us all is the same thing - death. Why in hell would I sit around and wait for it?
"I ain't wastin time no more
Cause time goes by like hurricanes
and faster things."
- Allman Brothers




P.S. In case you are wondering, here is a health update - the remaining swollen lymphnodes are still growing slowly and I still have the maddening itch. Much of my lower body strength has returned with concerted effort, but my speed and stamina are still a fraction of what they were. However, at this point, I cannot be sure that it isn't due to this extended time off. It has been 6 months and two weeks since my initial symptoms began.

2 comments:

EJ said...

I wondered why MTD was cancelled. I had hoped it was because you were too busy with your writing career but somehow knew it had to be something else. I am sorry to hear what you have been going through these past 6months. I hope you feel better soon and admire your resolve to carry on despite your health problems. I love the idea of living life, "not wasting time". Time is precious and we shouldn't let physical limitations, fears or the hope of a better day hold us back from doing what we can do today.
Keep care,
Eliza

Anonymous said...

That really sucks! Sorry to hear about it! Have you thought about going somewhere like the Mayo Clinic in MN? All doctors aren't equally good, and they have the best there. I hope you find out what it is, but in the meantime, I like your attitude!
Good luck!!!