Tuesday, May 7, 2013

Prologue to Change: Crappy Year - Part II

After I got out of the hospital, I spent a couple of days with my friend, Mel. But there is nothing like your own bed, and even though I couldn't do much, at least at home I could sew. After about a week I started going back to work. I was amazed at how quickly my breathing got better once the treatment started - it wasn't perfect but at least I could function.

So, all was going well until one morning when I got this excruciating pain in the lower right side of my abdomen. It was the worst pain I've ever felt and it had me doubled over and, once again,  gasping for breath. I tried to straighten up 3 times and each time the pain went shooting through me. I grabbed  my phone and called 911.

So here's the deal - when you are on Coumadin there are things you have to watch out for: swelling of the legs, discoloration of the legs and internal pain. If you fall, you have to go to the hospital. You have to worry about internal bleeding. I read all the literature I was given, plus more research on line. When I got this pain, I thought I might be dying. No waiting about for a day or two to see if it goes away.

The firemen and paramedics arrived, all cute as per their reputation, and started checking me out. My blood pressure was racing of course and one of them thought it might be my appendix, until I assured him I no longer have my appendix. Another thought it might be a hernia, but I knew it wasn't. We have a history of hernia in my family from my maternal grandmother's side. The boys get inguinal hernias and the girls get hiatal hernia. I had one when I was born - it was fixed by surgery when I was 2 and they reached down and grabbed my appendix while they were at it. My older brother had the inguinal kind, as did his son. My younger brother and my sister never had them.

Once again I found myself in the ER having tests done. It turns out I have an orange sized cyst on my almond sized ovary and the thing was torqueing, causing all the pain. At least it wasn't internal bleeding. After about 8 hours they released me with information and prescription drugs that did absolutely nothing to ease the pain, but they did make me fall asleep. If you can't get rid of it at least you can sleep through it.

After numerous phone calls and doctor visits, ultrasounds and pelvic exams, the Gynos confirmed that it was indeed a cyst, 99% sure it was not cancerous, but nothing could be done about it until I was off the Coumadin. I was told this while flat out on a gurney, in writhing pain. I suggested stopping the Coumadin, doing surgery, then going back on it. No. No go. Her hand on my shoulder, the nice doctor said, "The PE can kill you. This may hurt like hell, but you're not going to die from it." It's hard to argue with that logic.

The good news is, after a rough 3 weeks, the pain went away, and stayed away, knock wood. I guess it took awhile for the cyst to get as big as it is and all the while it didn't hurt. I must have done something physical, which I cannot recall, to cause the thing to torque. If I hadn't done so, I might not even know that I have a big ol' cyst in me.

So, bad start to 2013. Here's the thing though - I am not in pain, but my breathing still isn’t 100%. I feel like crap a lot of the time and my boss, Robert has told me on several occasions, that my memory shows some deficits. Of course, he's still frustrated that I haven't learned to read his mind yet.

Feeling like crap: Low energy. Breathing not great. Occasional tingling in my arms. Occasional numbness in my hands. Difficulty concentrating. Hair falling out more than normal.

These are all side effects of the Coumadin. And then there is this feeling I get of just not feeling good. It's happened 3 or 4 times, when I think, uh, maybe I should go to the hospital. But then I wait a bit, drink some water, eat a banana (always trying to keep my potassium levels up), do some yogic breathing (grateful for that retreat years ago to Esalen where I learned the yogic breathing!) and it lessens. I don’t like it. I don’t like worrying if there is something going on that I can’t control. Sometimes I think it is my heart, but I know it's not because I've been hooked up to a EKG 3 times in the past 4 months and there are no signs of anything wrong.

Oy. I am looking forward to getting off this damn drug and getting the damn cyst removed and getting back to normal. But normal has changed.

Here's a weird twist in the story. About a week after I got out of the hospital for the clots, I went back for a checkup and a refill on the drugs and shots. While waiting at the hospital pharmacy I got a phone call from my cousin Kimmie in Florida. She's not sure if I know or not, but my mom is in the hospital. She had just heard from her father (my father's brother) who had stopped by my parents house to visit, only to find my dad coming out the door saying, "I can’t talk right now, Sun's in the hospital."  I thank her for letting me know and call my dad.  (Sun or Sunny or Sunshine - that's my mom.)

Me: Hi dad. What's going on with mom?
Dad: How the hell do you know?
Me: Dad, you can't stop the flow of information.

At the time of my call they weren't sure what was happening, but it turns out, she had a DVT and a PE! She had also been suffering with the flu, had been inactive, and  found herself unable to breathe. She passed out in the kitchen that morning.

After she was back at home and recuperating I called her. I told her this could just be some weird kind of coincidence, or, maybe it's genetic. I have a friend who has a genetic mutation for clotting, as does her mother. So my mom got the test and yes, she has a mutation for clotting. Under normal circumstances, I would have a 50/50 chance of also having the mutation, but considering I already have the clots, the doctors agree, it's probably a 99%+ chance that I also have it.

Unfortunately, my mom is having a harder time. She's 80 and I guess that's part of it. When the blood clot traveled north, it caused damage to her heart, lungs and her kidneys are a bit damaged too. Knowing this, I count myself lucky, but can't shake the feeling that I might be living on borrowed time.


  1. borrowed time... when i was 38 my doctor told me to get my things in order and i was then realistically and statistically looking at 6 months to 1 year as my t-cells started making themselves scarce. well here i am 55, sis, and so you will turn 60 with me -deal? there's really no excuse for dying - and in the meantime go ahead with all and any changes you wish to make in your life. couch surfing is interesting - and my couch is waiting for you here in bern, though you may have to use the bed as i am loath to leave my couch and don't use the bed anymore - it reminds me of being sick (and lonely). cheers!

  2. Walther: Deal! And I look forward to couch-surfing at your place and seeing beautiful Bern - and also up to the cabin in the alps please? I am so glad your doctor was wrong and you are still with us.