Sleepy nugget times

Star's grandma Valerie made the hit of the year with her present: A big, fluffy cat bed! We weren't sure star would want to use it, but amazingly she has been jumping right in nearly every night. The bed is atop a TV stand/dresser we have in our bedroom closet. She likes to be up high, and I think she likes to be high in our closet specifically because she can keep an eye on us. Isn't she quite the fearsome guardcat?

Forget rolaids! I spell relief G-e-l-c-l-a-i-r

One of the more "fun" parts of chemo is its ability to make you miserable in ways you never before thought possible. So it is the case with this new chemo I have been getting: Erwinia. Within a few hours of getting the first shot, I started to feel funny. My face swelled up, my cheeks were flushed, and in general I just didn't feel right. As I have gotten subsequent doses, the situation has deteriorated. I shaved several days ago (I think it was sunday) and had some razor burn. I still have the razor burn. It just doesn't want to heal.
Chemo has a devastating effect on the body, even at its most targeted. The chemo I take is aimed at killing cancerous white blood cells. At the same time, however, it kills good healthy white blood cells, and it also kills any of the body's "fast growing" cells, particularly those in the Mucous membranes.
The worst part of the killing spree has manifested itself in my mouth. I'm not sure if you can tell by this picture, but my tongue has swollen to about double its normal size and has these nasty lesions on the sides of it. The lesions are VERY painful. I had beern taking Oxycodon to manage the pain, but for some reason the Oxycodon was making me super agitated, even wired, and on edge all the time. I couldn't have been much fun to be around.
Because of my hyperactivity and loopiness, I stopped taking the Oxy after getting barely any sleep for the past few days. Last night I was able to sleep more or less all night long without tossing and turning. But when I woke up, it was there waiting for me: Shooting, stabbing, bone-pulverizing pain.
When I was in the hospital this summer there my mouth got a little bit sore, but nothing like it is now. Then I could just use the Peridex mouthwash and a mycelex troche(kind of like a lozenge) and my mouth would immediately feel better. That hasn't worked for this new problem. On Tuesday I was at Roswell for an Erwinia shot, and told Linda the nurse practitioner about the pain I was having. She gave me a box full of Gelclair samples to try. Gelclair is a gelatinous medicine that, when swished around in one's mouth, creates a protective coating over the sores so the exposed nerves don't light up like a painful Christmas Tree. It also is supposed to help the sores heal. I had tried the Gelclair in the clinic, and it worked great. Unfortunately that was the day I had my super low platelet count of less than 5000. After three bags of platelets and at least 4 hours of getting them, I was in a HURRY to get on the road and get home. Predictably, I left the samples on my tray in the clinic.
In even more pain on Wednesday, I called Roswell and asked Linda for a prescription for the Gelclair. , which she quickly ordered from Upstate Pharmacy. When the Gelclair didn't show up on thursday, I called upstate. THEY HAD NEVER SENT IT. Apparently the size or dosage or something wasn't available in its complete form, so instead of sending what they had, they sent nothing at all. Worst part was they didn't even tell me or the NP, so neither of us could pursue the medicine elsewhere. If I had known, I would have had the Vestal Target Pharmacy order the stuff, and would have had it by Thursday. When I called upstate on Thursday wondering where my stuff was. the lady on the phone said, "Well, when we send fedexes, we want to make sure we've got everything." What that means to me is she was worried more about the $20 Fedex package than relieving my several days of agonizing pain!
This may be the last prescription I ever fill from Upstate Pharmacy . I just can't tolerate an organization with that little of a clue.
Anyhow, it all turned out OK in the end. Di and I drove up to Roswell today for another Erwinia shot and the Vincristine, and a whole case of the Gelclair, probably 100 doses, was waiting for me at the nurses' station. I just used some before writing this blog entry, and I've got to tell you the stuff is sweet, sweet relief. Finally!

And God blessed us, every one

A very full belly and lots of laughs later, I've got to say this is really one of the best Christmases I can remember.
I know it will probably sound corny, but there were many days this year where I wondered if I'd even be around for Christmas. To my great relief and enjoyment, I was really more than around. From dinner all day yesterday with Di, Mom and Dad, to the feast at Phil's house in candor, to goofing around with the kids and their toys at Kathy and Mike's Owego home, everthing sparkled a bit more, everything seemed to mean more this year, because honestly I thought most of it would not include me.
So I ate a lot of food and talked a lot of talk and was probably way too hyper way too many times, but I don't really regret any of it. We had such a damn fine time and I think I really know what it is like to be grateful for the time with all of my family, in a different and very wonderful way from what I've had in the past.
You couldn't ask for a happier man than me at this point. Even though I'm on chemo and my mouth is sore and I'm tired, I am also completely satisfied. Without getting into too much hyperbole, this Christmas was just about as perfect as anyone can expect. Gives me a real charge going into the new year, this perspective that I hope will continue giving throughout the difficult days and weeks that I know are coming down the line.
Merry Christmas everyone! I hope your day was a fifth as special as the way I treasured mine.

Looks like I made it

Well today was a long day, but worth it. I picked dad up in vestal at about 5:55 today and we headed to buffalo. After the four hour drive there, the waiting in Roswell Park and the evaluation from my Nurse Practitioner, the famed Erwinia was given to me and I seem to be doing ok. Keep our fingers crossed though!
However this chemo has been much harder on me; my White Blood Cells are quite depressed (down from approx 10 k/ul monday to 1.47 today, and I am left with 57 platelets per n. That means I will probably skip the beebe gift exchange tomorrow, and not go to church on monday. I know the counts aren't very likely to increase, even though I am taking the neupogen white-blood cell shots every day. Will save myself for sunday dinner at mom and dad's, Phil's and Kathy and Mike's on Monday.

Very tired now. Going to watch TV and relax a bit. I am pooped!

MattK

Erwinia Erwinia....Er win with Erwinia

OK, sorry for the goofy title.
Barb Anderson (research nurse and generally good doo-bee) came to see me today at Roswell to sign a consent form for this fancy Erwinia drug. As it turns out, there has been some difficulty with getting it. Not so much a difficulty as someone used old numbers and did not expect the cost to go up by about 40%.
Ahh. Drug companies. Don't we love them? I think I should buy stock.
Anyhow, Roswell had to hold up on ordering it and get the new amount approved by blue cross, who promptly approved the discrepancy. Gee. They were nice about that, weren't they? I mean, in my work life if I quote somebody a price and then submit a price for billing that's $20 higher they will raise holy hell. But thousands? They might laugh me off the phone. Sure am glad BCBS had such a good attitude about it.
The long and the short: I probably won't have my dose scheduled for Tuesday, and maybe not friday, though I have offered to stay another day if necessary to get the shot. Barb is going to petition the study chair to allow me to have these pricey injections that I am missing at the end of this current round of treatment. Otherwise, the stuff will just go to waste, as no other cancer patients in the entire hospital --or according to the FDA, the country -- need this stuff.
Otherwise all is very well. I seem to be tolerating today's chemo just fine. The cytoxan (ominous, clear fluid) made my brain all funny and gave me a pain in the nose like you'd get if sniffing horseradish. The discomfort was quickly eased, however, by the daunarubicin, a chemo drug that has the color and consistency of red cool-aid.
Lots more fun for my week up here in Buffalo. Stay tuned..I'm here all week. Really, I am!

One Clingy Nugget

Star has just been all over me lately.
I'm not sure what it is. Maybe it's the cold weather, maybe its the fact that I'm around a lot. Maybe its because she's just a nugget, but for whatever reason, this cat is around all the time.
---
Anyway, I'm doing well. After a weekend filled with social gathering (IE Ron and Dawn's STYP fiesta for the Christmas Holiday gift swap) I had my blood test today and, goody, it looks like my blood is finally doing what it is supposed to. I'll be heading up to Roswell Park for some good, old-fashioned FUN chemotherapy. It'll be a bit wierd, as I haven't been there in a while, but I'm sure I'll warm up to it soon 'nuf.

Othewise I've been spending an inordinate amount of time playing with my model trains and, oddly, cooking. On the trains bit (see how inordinate this is??) I've been using the excuse of Meg and Nate. On The cooking bit, well, I just like to cook. Plus, diane is back to work this week--we had a fun week together, so now as long as I am home I am helping with the cooking and the cleaning and the making of her lunches.

So, as promised at the beginning of this post, Star STILL won't leave me alone. She's sitting on my lap now, enjoying it while I write and staying up with me past my bedtime, despite of course the fact that I no longer really have a bedtime. . .

Birthdays with the Kenseys...

In the Kensey Household, we celebrate birthdays the old fashioned way: All at the same time!
Yesterday was my Birthday, Dec. 2. Today is Diane's Birhday, Dec. 3rd. I will reveal that yesterday i turned 28, but due to contractual obligations and the fact that I value my right eye tooth, I will not reveal Diane's age.
We had a nice time on my birthday. Spent most of it just hanging around, but got out of the house in the afternoon to visit Tom's on Main Street. See, a certain printer and lettershop has been bestowed with the honor of printing and mailing the sacred Tom's birthday cards and other such coupons. As loyal Tom's customers, Diane and I receive their regular mailings and the latest one caught our attention. Free coffee always catches our attention!
A full pound of Italian Espresso later -- we wouldn't just take the half pound, I mean, that would be silly and kind of cheap-looking, right? -- we were out of Toms and headed to Manley's to pick up some wingys. Later on that night, we ate a wonderful meal at Sabaidee, a Thai restaurant in Endwell, with my Mom and Dad. Though the service was a bit spotty and the bathrooms were somewhat less than perfectly desireable, we had a nice time. And what was with the fake crabmeat? I mean, does anyone who's actually ever had crabmeat really believe that the fake stuff is even close to the genuine article?

I had some pretty incredible news this week. First the good: Remember L-asparaginase, that chemo drug that gave me hives the size of Volkswagen Beetles? After that episode the Docs decided I wouldn't get that particular drug anymore, for fear of anaphylactic shock. Trouble is, the next round of chemo I am scheduled for requires this drug be given several times. Now, chemo has taken a whole new importance to me, as bone marrow biopsy has been tabled. I remembered someone mentioning this very expensive drug that comes from europe that is an alternative for difficult (you know, petulant or allergic) cases like me. Called Erwinia, the drug wasn't available before, but having a bit of time, I asked the good folks at Roswell to seek approval from my insurance company for the replacement chemo, which I was told costs about $30,000.
The long and she short of it? After several days of waiting and consternation, the Erwinia was approved! I'll be starting it as soon as it is made up and shipped to Buffalo. I was shocked. The people at roswell was shocked. One person there was so sure It would be denied that she bet me her paycheck it wouldn't come through. I forgave the debt for the sake of her two beautiful children and her desire to buy them christmas presents.

From the wierd an annoying department: So, Diane and I trekked up to Roswell Thursday for the startup of the new chemotherapy routine. Much like the old routine (the one I had in the hospital) the new module required a blood test at the outset. They kept me sitting in the chemo clinic a good two hours before a nurse practitioner, Linda, told me that my Absolute Neutrophil Count (ANC) had dropped to about .75, which is too low to start treatment. ANC is a formula based on the White Blood Cell count as well as some other factors. It was really wierd as my blood levels have been fairly stable for several weeks. Anyway, I was told to go to Broome Oncology Wednesday for bloodwork, and if my WBC levels rise and restore my ANC to a good enough baseline, I would probably start chemo friday the 8th. We'll see.

That's all for now folks...