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.
Wednesday, January 19, 2011
Friday, January 14, 2011
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?
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?
Tuesday, January 11, 2011
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.
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.
Friday, January 7, 2011
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.
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.
Wednesday, January 5, 2011
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.
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.
Monday, January 3, 2011
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.
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.
Tuesday, December 28, 2010
Down But Not Out
Last Wednesday, I packed up the pieces of what had been me and went to see Dr. Shore, my oncologist. The only time I'd felt worse than this was during chemotherapy or transplant. I was so unsure of my psychological footing that I brought my friend Jeff along for cognitive and emotional support.
On the blood front, white cells are normal, reds are rising and platelets are falling a bit. I don't have leukemia. But I'm experiencing a significant flare-up of graft versus host disease. Mr. Donor's lymphocytes are giving my organs a hard time, targeting my skin and liver in particular. I'd been looking forward to ending my rocky relationship with steroids, but instead of finally throwing the bum out for good, I'm increasing my exposure from 5 to 20 mg daily. It's demoralizing.
After explaining why she wasn't happy with upping my dose, Dr. Shore suggested I consider a treatment called photopheresis. This is a non-toxic way to handcuff lymphocytes, but it's time-consuming in the extreme. I would have to go twice weekly for six to twelve months. I would be hooked up to a machine for four to six hours, have my blood sucked out of me, lymphocytes isolated and irradiated with ultraviolet light, and then have my blood pumped back into my body. All the sucking and pumping will probably collapse my veins in no time, so I would have to have a catheter inserted in my chest, which makes treatment easier but life harder. Back to line-flushing, dressing changes, possible infection, problematic showering and the creepy feeling you get from have tubes protruding from your body.
Obviously, this is something to chew on a bit. Dr. Shore told me to think about it and call her with a decision because she has to get the approval of my insurance company first. It must cost a fortune. Thankfully, an Arizona politician won't be deciding my case.
I just want to put all this stuff behind me and get on with my life but I can't. Rolling Stones tunes keep popping into my head: Shattered, Emotional Rescue, Mother's Little Helper, 19th Nervous Breakdown.
To ward off the latter, I'm taking the pharmacological route: 20 mg. of Celexa daily.
On the blood front, white cells are normal, reds are rising and platelets are falling a bit. I don't have leukemia. But I'm experiencing a significant flare-up of graft versus host disease. Mr. Donor's lymphocytes are giving my organs a hard time, targeting my skin and liver in particular. I'd been looking forward to ending my rocky relationship with steroids, but instead of finally throwing the bum out for good, I'm increasing my exposure from 5 to 20 mg daily. It's demoralizing.
After explaining why she wasn't happy with upping my dose, Dr. Shore suggested I consider a treatment called photopheresis. This is a non-toxic way to handcuff lymphocytes, but it's time-consuming in the extreme. I would have to go twice weekly for six to twelve months. I would be hooked up to a machine for four to six hours, have my blood sucked out of me, lymphocytes isolated and irradiated with ultraviolet light, and then have my blood pumped back into my body. All the sucking and pumping will probably collapse my veins in no time, so I would have to have a catheter inserted in my chest, which makes treatment easier but life harder. Back to line-flushing, dressing changes, possible infection, problematic showering and the creepy feeling you get from have tubes protruding from your body.
Obviously, this is something to chew on a bit. Dr. Shore told me to think about it and call her with a decision because she has to get the approval of my insurance company first. It must cost a fortune. Thankfully, an Arizona politician won't be deciding my case.
I just want to put all this stuff behind me and get on with my life but I can't. Rolling Stones tunes keep popping into my head: Shattered, Emotional Rescue, Mother's Little Helper, 19th Nervous Breakdown.
To ward off the latter, I'm taking the pharmacological route: 20 mg. of Celexa daily.
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