Early Morning Clinic Visit

It's been a long time since I've had to get up early to go somewhere. Usually I just hang out in my jammies and drink coffee before ambling off to the gym. This morning, I was due at the photopheresis center at 8 am, so bounced out of bed at 6:30.

Here I sit, hooked up to a machine which is draining me of some of my blood. This will be treated with UV light and returned to me. The process takes about 3 hours. To entertain myself, I've brought my laptop and the Keith Richards book. I also have my cell phone if anyone feels like chatting. I can always nap.

Maybe I'm reading a lot into it, but it seems my eyes have been a little less dry since the first treatment. One of the side effects of these sessions is that you're tired the next day. I didn't experience any more sleepiness then usual.

When I leave here today, I have to wear movie star sunglasses to protect my eyes from UV light, along with 85 sunblock on my face. This sensitivity lasts for 24 hours, so I will be walking around Jeffersonville tomorrow looking like a druggie, which in that hippie town is not so unusual.

Look for the girl with the sun in her eyes and she's gone.

First Photopheresis Treatment

The worst part of my first treatment was the frigid temperature outside. Otherwise, it was manageable. My nurse was great; it only took 3 hours; my friend Jeff escorted me home. I tried to use my time tethered to the machine wisely. Unfortunately, I couldn't see straight most of the time and so sat there like a slab of meat undergoing a bizarre koshering ritual.

My blood was sucked out and sorted into components. The T-cells were isolated and treated with UVA light. Most of the blood was returned to me. T-cells are the white blood cells that are attacking my body, keeping it leukemia-free but wreaking havoc on various body parts and systems. Photopheresis is a non-toxic way of handcuffing these bad boys and keeping them in line. Soon I will be weaned off steroids, which are bad for you long-term, and treat symptoms, not the disease itself.

For 24 hours post-treatment I am very sensitive to sunlight, especially my eyes. If I go out today, and I plan to, I get to wear these very cool sunglasses. Of course, right now, it's snowing so I think I can safely leave the apartment without them.

Any Port in a Storm

So I had my port installed yesterday and all was well. Saw my doc and my blood counts were good. Even my liver enzymes are improving. Marty made me dinner and we watched repeats of the Daily Show and the Colbert report. I went to bed around 9:30, having popped an oxycodone for the slight pain I was feeling around the incision. Say yes to drugs!

Two hours later, I awoke to a bloodbath. I exaggerate. It was difficult to say where the blood was coming from because the dressing was blocking the view. It wasn't pouring out so much as seeping. We made a plan to go to the hospital first thing in the morning to have it checked. In the meantime, I sat upright in a chair and applied pressure to the wound.

Marty became more nervous by the minute. We went through a lot of paper towels. Finally, we decided that since there wasn't really much on TV, we'd go to the hospital before the snow hit. We couldn't find any tape to hold on a stack of paper towels, so we did something even better. I highly recommend this technique for anyone bleeding in the middle of the night who doesn't want to soil their clothing. Cling Wrape to the rescue!

We placed a towel over the gore and Marty wrapped me up like a leftover. We hopped in a cab and went to the ER at the hospital where the line had been placed earlier in the day. Freak show!Everyone and her mother wanted to find out more about me. They'd never seen anything like it! My treatment consisted of applying pressure to the bleeding site, which was probably just a broken blood vessel.

My accomodations consisted of a gurney in a hallway where anyone who wanted to could see my boobs. Not that anyone wanted to, because all of the patients were in much worse shape and demanded the attention of the medical staff. It was like being in a psycho ward, with much screaming and very bad smells.

Hours later, the bleeding staunched and with a new dressing, I was discharged into the dark snowy night. You can't make this up, and why would you?

I took another oxycodone and slipped into bed and unconsciousness. I plan to stay in my pijamas all day so I can nap at will. I'm going to have some breakfast now, and try to stay out of trouble for the rest of the day. Or at least until Marty gets home.

Line Installation and Other Fun Activities

I know I sound like a broken record, but I dread having the catheter installed tomorrow. I associate it it with evil things, like poison being dumped into my body. This won't be the case with this line, but I can't seem to get beyond the many annoyances this apparatus brings with it. The only good thing about having a line is that I won't have to be poked with needles for a long time.

Marty will take the day off and escort me to the hospital. Then we'll probably do lunch before seeing my oncologist. Except for my eyes, I've been feeling pretty good lately.

I totaled our medical costs for 2010 and arrived at the sobering sum of $11,300. We'll deduct this from our taxes, but with little income, it won't amount to much. Maybe a hill of beans.

Fortunately, I have some good drugs to numb any discomfort I feel once the anesthesia wears off. It's usually not too bad, but then I'm usually in the hospital after this procedure, getting ready to tank up on the toxin. There, the drugs flow freely and since you have nowhere to go and nothing to do, you can slip away to a place where there's no pain, where leukemia doesn't exist.

A Modest Proposal

Hey fans. I know you've been holding your breath on this, and I'd hate to see anyone expire from my lack of trying, but I did something a moment ago that may bring me one step closer to immortality. Heh, heh.

I contacted a literary agent and pitched my idea about writing a book about my experiences with this dreadful disease. This isn't the first agent I've made a proposal to. I spent most of last Spring recycling polite rejection letters from all over the country. They loved my idea, but didn't handle books like that. Am I too hot to handle? Some like it hot.

Photopheresis treatments will have me tied up for the forseeable future. It will give me world enough and time to spend pouring my thoughts onto paper, er, the computer screen. From shocking diagnosis to body-altering treatment to relapse, stem cell transplant, relapse, another transplant to my recovery and recurring health issues, it will be a tell-all tale of misery, madness, magic and mojo. It has Oprah written all over it.

I know I can count on your support, including the purchase of many copies to give as inspirational gifts. This may put a dent into the devastating expenses I've wracked up over the past five years. I can dream, can't I?

The Plug

In an attempt to get some eye relief and to make sure I'm not damaging my eyes, I went to my opthamologist today. He recommended I stay on the Restasis and he plugged one of my tear ducts to see if that would help. A plug apparently keeps moisture in the eyes instead of letting it drain out. He only did one eye so we'd be able to identify the procedure as having caused any improvement, not time or continued use of Restasis.

The media is trying to cow us by fanning the snow fire. We may get a foot (or more!), or we may get a few inches. Marty says we should ship milk, bread and eggs up to Rhode Island where they fear snow more than nuclear meltdown. New Yorkers can be cavalier about disaster because we can pick up the phone and call for our favorite take-out regardless of how impassable the streets might be. I've almost been taken out several times by delivery personnel careening down sidewalks and streets. Ah, the price you pay.

One of my favorite bloggers came for lunch yesterday. We have so much in common, we joke that we are doppelgangers. It was so nice chatting with someone who recognized that living one day at a time, taking baby steps and otherwise dealing with cancer fallout is not as rewarding as it might seem to those who don't suffer from chronic side effects. Others mean well but they don't look like chipmunks, their livers behave, and they don't appear to have leprosy.

No word yet on when I will become the bride of frankenstein once again. The earliest I will get the catheter implanted is next week.

Time to walk the most famous dog in lower Manhattan, the Big Turbowski.

Shrink-Wrapped

I saw my friendly psychopharmacologist yesterday. It seems I'm on the right stuff and that my mental acuity is still there. I got 100% on my cognitive test, which I'm pretty sure I could have aced from the time I was 7. $500 for 45 minutes. Ouch.

Because I hadn't had lunch and was starving, I dashed out for some street food. Because it was freezing, I stopped at the first one I came upon and bought a hot pretzel. Pure cardboard. I should have opted for the hot dog.

Next stop, my oncologist's office. My blood counts are fine, the iron is off-loading again from my liver (which is still terrorizing my metabolism), and my cholesterol count (non-fasting) is down to 255. They may have lost the jug of urine I lugged in from my 24-hour pee-fest. It probably went to the cafeteria instead of the lab.

I have an appoinment with my opthamologist next week to figure out what to do with my eyes. I'll probably also have the catheter implanted in my chest so I can start photopheresis. This is not how I imagined my life in New York, but it's a life.

Eye Yi Yi

Thanks for the votes of confidence. Unfortunately, my eyes were so bad yesterday, I cancelled my interview. I plan to reschedule it next week.

It seems I'm producing no tears and my eyelids are swollen. The best treatment is to put a cold washcloth over them. It's cheap and effective but doesn't allow for much mobility. For the record, I'm using Restasis, lubricating drops and taking 2 teaspoons of flax seed oil per day. Yes, it tastes vile.

I have an appointment with my oncologist tomorrow. We'll see if she has any suggestions for dealing with this ocular challenge.

Turbo is improving. The street-fighting man got into two skirmishes yesterday, with a small dog and a very large one. Luckily, Marty was walking him and no one was injured.

The Ayes Have It

Restasis, flax oil (by mouth), eye drops, eye gel, cold compresses. My eyes are killing me. My donor cells are forcing me to keep my eyes closed much of the time. This seriously crimps my style, not to mention my life.

Tomorrow, I'm supposed to go on a 5.5 hour interview for a NYC Teaching Fellows position. I have to take a math test, teach a lesson, join in group activities and have a one-on-one interview. Frankly, I don't know how I'll handle this, but will give it the old college try.

Some of you may remember that I was accepted into the Rhode Island Fellows program and that I went to the interview with extreme laryngitis. If you want to be heard, whisper. Worked for me. How can I turn this latest problem into a plus? I'll think of something.