Missive from Minnesota

So, I am still here, in lovely downtown Rochester. Everyone here is as nice as they can be, knowing that most of us staying here are sick, or dying or both. There is one little old lady who parks herself in the lobby all day long, everyday, dressed to the nines. I've found out that she has lived in the hotel since the late 70's, she is 101 years old.

Interesting.

Lots of soldiers here today. The Iraqi bigwig must have left, as the secret service goons are gone, or else they have become less conspicuous. Most of the stores are closed on Sunday, so I can't go visit Trisha or Michelle, the girls who run the toy store. They have sympathetic auras, and I instantly knew that I could go in there and breathe deep and let the tears run down my face without worry. Standing there among the Thomas toys and the pretty dolls, I think of my children, and how much I miss them. They let me just stand in there, breathe in all the childhood that I am missing right now. Yes, it hasn't even been a week, but my children are all I've ever wanted in my life, and if I lose it all else, I'll still have them, and I'll still be complete.

But the store is closed today, so I stood outside the windows for a bit, then went into Starbucks and saw a woman outside walking the fattest old yellow lab I've ever seen. So I went outside and ran after her, asked if I could pet the dog and loved up on that lab like it's never been loved on before. Two soldiers were out there smoking, they too, loved up on the old girl. The lady said she's a farm dog, but has good manners so got to come to town today, and she may never get the dog to go home because of all the love she's gotten today. I don't want her too. I let the dog lick my hands until they were sopping, still isn't like the drool I get from my hounds. I miss them so.

Being away from home is hard. Giving up all the control to others is harder. Not knowing when I'll see my children, just being marooned here is hard. Being in pain, being scared, sad and lonely is hard.

Some people have been here for months, some just a few days. But we are all connected by the fact that we are all unwell, in varying degrees, and we've all come here as the last ditch effort to save and/or improve our lives.

In the last couple of weeks the pain I live in has become unbearable. Friday I was at Dr. E's office, getting the last of my test results back and planning on the surgery which will probably be on Tuesday. His nurse Colleen (her real name) was so wonderful, she called my cell earlier to check on me, and was showing me a shortcut back to the hotel when that pesky stone that was in my right ureter flared up again. it's a small one, but I'm so worn out and hypersensitive, it brought me to my knees. I crumpled to the floor and started sobbing "this is what I live with every day"

I had my second ambulance ride in as many days, taking me to the ER. They had a full house, but put me on the top of the list, and after 4 tries, they got an IV in me with a huge dose of drugs. Still the pain persisted, so they kept me overnight in an observation unit hooked up to a Fentanyl PCA. In the morning I told the Dr that even though I'd probably be better off staying at the hospital on the meds, psychologically, I needed some semblance of control, I needed to go back to the hotel. They let me go, got me a cab and I came back. I stayed in bed all day. People called and I was in and out of my haze, don't remember talking to many of them.

I called for roomservice around 10, got a rueben, that I ended up eating for breakfast. I read through all my medical records and then decided that I needed to leave the room for a while. I might go hang out with the 101 year old lady, or I might stay here and blog, I don't know.

Life is so fragile at times, it makes me sad. I'm scared of this surgery coming up, but what other options do I have? This is my last chance at normal. And even with this, I will still have Loin Pain Hematuria Syndrome, I just wont' feel it since the right kidney was denervated. We just have to pray that it won't spread to the left kidney.

I had a transitional cell papillary carcinoma of the bladder at age 29. This normally is seen in black male smokers over 50. I was white female non-smoker under 30, less than 1 tenth of 1 percent chance of getting that. Now I have been diagnosed with a syndrome that has affected less than 500 people EVER. And I am only the 10th person here at Mayo that Dr. Sarducci has ever done it on.

Couldn't I be extraordinary in another way? Like, say, winning the lottery?

Typing this out has helped. It is so hard, not being with my babies, not being with my dogs, being stuck in a strange city, having a rare disorder and having an even more rare and drastic surgery in the hopes that this solves my problem.

I want to go home and live my life. The fear that my kidney will not make it through the operation scares me, the thought of living with my remaining 1/2 a kidney, or being on dialysis is terrifying. But if I don't take that chance, all we can be sure of is that I'll be a narcotic mess for the rest of my life.

Oh the decisions we must make.