Wishes work, part 2

My flat tire is fixed and I got my shot of Neulasta and my laundry is done. Thanks to all the people who helped out with those things. It was a real team effort today. Now I'll wish for a good night's sleep.

Wishes work but prednisone sucks

My written wish to have a friend call and volunteer to take me to the Cancer Care Center this afternoon worked! My buddy Bob called me late last night and we're all set for this afternoon. Let's see. What should I wish for next? A new body that works right? Whoa, I should be careful what I wish for! I might not like the process I'd have to go through to get it! How about if I just wish to get my flat tire fixed? That could happen this afternoon, if all the air isn't out of the tire. Plans are in the making.

I take back what I said about my body being used to prednisone and not feeling the effects as much. The past couple of months I haven't had sleep problems with prednisone, but last night I was awake until after 4 am, and woke at 7:00. I feel like my brain isn't all the way awake--I'm stuffy and stale and fuzzy-brained. However, between the 5 hours of treatment and the recovery at home and then not being able to sleep, I read two books yesterday. Maybe the prednisone sped up my reading. Speed reading in the predni-zone! I hope this trend doesn't last the whole 5 days of prednisone. I'll be a zombie! I'm already most of the way there. And I'll definitely run out of library books.

I thought I could use my incarceration time to update my website for my fall class, but the techs are working on upgrading the server and installing a new version of WebCT, and they say don't try to log on until at least Monday. Nuts! I suppose I could do the work on paper and then transfer it to the system on Monday, but that seems like doing the work twice. So far I've heard from two of my new students. I'm getting excited about the new semester. I have lots of ideas I want to try. I think, though, I should limit how much I change or I'll drive myself nuts. Seems like whenever I change something, it means more grading for me, and that's the worst part of teaching. I love to read my students' ideas, but hate to grade the papers.

The good news is that Erin is coming home on Sunday, so I'll have a chauffeur for next week. Now if she'll just hang around til I get my cast off, that will be great. I won't have to worry about getting so many rides. This will give my friends a break from good deeding. It's a lot to ask of people to continue to help out all the time. I've been in non-stop treatment and/or transfusions for two years! And currently there is no end in sight, although I've been improving in some areas.

My platelet count has stayed up all week after the transfusion Monday. My platelet count was 56 yesterday! That means a bunch of those are my own cells, not from the transfusion. Of course then yesterday I got the whopper chemo again, so that will suppress my counts. But the overall trend is better than it was a few months ago. Must be all those bad puns and jokes I've been reading and sending to hapless friends and family since I signed up for ILUVJOKES listserv. It's run by one of the guys from the Non-Hodgkins Lymphoma discussion list I belong to. I skip the "adult humor" X-rated stuff (which I usually find more sad than funny) but a lot of the G through PG-13 rated stuff is funny and/or groanerous. Humor heals.

Long Day and Transportation Woes (or I'm singing the Blue Cast Blues...)

Actually, I got out at 2:30, but it still seemed like a long day. I did fine with the "fast" infusion of Rituxan (3.5 hours) and this was followed by the vincristine and Cytoxin (1.5 hours). Cytoxin is the worst one of the mix now, because it causes some nausea and headaches. I had a little of both, but not unmanageably so. Now they give me a serious anti-inflammatory drug called Toridol and also the Cadillac (or should I say BMW or Mercedes these days...) of nausea drugs, Zofran. So I'm okay, but just feeling a bit off. Also I started prednisone today, which makes me a little weird too, but I haven't been getting the bizarre mood swings like I used to with the prednisone. My body seems to be getting used to being bombarded with it five days out of the month, which is a little scary in and of itself.

The hardest thing for me this week has been trying to get rides. Almost everyone I know is out of town on vacation this week and so I've been hard up for volunteers. Now I have to go in tomorrow an extra time to get my Neulasta shot, and it's got me calling acquaintances and and coworkers, none of whom have returned my calls tonight, so they are probably all out of town too. I wish I could just jump in my car and go, but I can't for several reasons: 1) I have a cast on my right foot, which is cute and bright blue, but quite unmanageable for driving. 2) I'm on prednisone and would be a very iffy driver anyway by late afternoon when I have to go. 3) I have a flat tire on my car. Now that certainly doesn't seem fair, does it? I haven't even been able to drive my car for the past two weeks and now I have a flat tire which I have to get fixed tomorrow, because my car is geting the end-of-lease inspection next Tuesday and consequently is getting detailed and buffed up on Monday. And I can't drive the darn thing to do any of it!

It's a good thing Erin is coming home from camp on Sunday (after all the post-camp deconstruction and counselor partying). I'm counting on her to drive me (or at least my car) around Monday and Tuesday--which is a risky proposition if any of you have ever seen her driving record... (just kidding, Erin! I won't tell them about you getting the truck stuck under the low roof of the parking deck yesterday...) I might be in better shape if Steve could drive, but who knows how good a driver he would be! He's never even had driver's ed, not that it helped Erin much. :-) I don't know if my car or my insurance premiums could take it.

And now I have to turn in my car and get a new one, while I have a cast on my foot! This does not bode well for test driving some zippy new model. I think I'll just get another Beetle and make it easy on myself. Maybe I can get the salesman to drive it home for me. It's only a few blocks. Hey, Mr Car Salesman, I'll lease that car if you'll drive it home for me! Somehow that lacks the necessary dignity and seriousness with which I try to approach car salesmen who usually think I'm a total ditz anyway. And this time he'll see the lovely blue cast on my leg and the IV port in my arm and think he's got a real live one here. Maybe I can get the sympathy vote from him. Or a good deal on my car...

I'll worry about it tomorrow. I need some serious ice cream here. And hopefully, a return call from one of my friends who just happens to be free tomorrow afternoon... I can dream, can't I?

P.S. It's my mom's birthday today. Happy Birthday, Mom!

My So-Called Vacation

This last week and a half has been so different for me. Almost like a vacation, in a weird sort of way. What has occasioned the change is breaking my foot and getting a cast on. Since I can't drive, it's been hard for me to get back and forth to the Cancer Care Center. I can arrange rides for my treatments and transfusions, but before this I was having to go in every day for a neupogen shot to raise my white blood count. The nurses tried to talk Medicare into a home health nurse coming by to give me my shots so I would only have to come in when I needed a treatment, but Medicare, in their great wisdom, turned down the request with the following logic: If she can get there for a blood transfusion, she can get there for a shot. The question of why I should have to travel for an hour to get a two second shot everyday is irrelevant.

Luckily, the doctors and nurses weren't about to stop there. There was a meeting of the minds and they decided to try me on Neulasta, instead of Neupogen. Neulasta is a slow release version of Neupogen that lasts about 21 days. I don't meet all the criteria, but given my present situation, they decided to give it a try anyway. Even if it only works during this month I have the cast on, it will be worth it. So far so good. This actually makes me feel less "sick", since I don't have to go in there every day, and I don't really feel sick anyway.

So now I am having 2 or 3 days during the week free, when I used to be going into the CCC. Great, huh? But I'm stuck here in the apartment, more or less, because I can't drive and I can't walk far with this cast on! So it's been an in-home vacation, during which I'm dependent on other people bringing me food, doing my laundry, running errands, picking up library books for me, etc. And most of the people I know are away on vacation this week--to exotic places, some of them, like Europe and Australia. So although this is a vacation in the sense that I don't have to go to the hospital every day, it's also like being in quarrantine in my apartment. Worse than my usual low counts quarrantine, because I can't even go for walks or do my own laundry in the basement.

The thing is, I don't feel sick. I just feel clumsy with the cast (a ball and chain experience, according to Walt, and I have to agree). I can't even go out for a walk in the nicer weather, since it's too hard to walk very far. (And I'm supposed to be off my foot...) It's very frustrating. I totally understand why some people take their own casts off. I've been tempted.

So while on this "vacation" from the CCC, my world has actually shrunk, instead of expanding. And now tomorrow I will go in for my next "big" chemo, when I'll get all the drugs (Rituxan, cytoxin, vincristine and prednisone, along with various anti-side effects drugs...). This happens every four weeks, and it's the signal that soon I'll be under house arrest because of my low blood counts. This should occur right about the time I get my cast off and can drive and do things again! AAAARRRRGGGGHHHH!!!!!!

However, my mood might lighten up, since I'll be on prednisone for 5 days, starting tomorrow or Friday, depending on how the chemo infusion goes. I'll have lots of fun racing up and down my hallway on the computer chair while I'm on prednisone! I may have to be more careful though. Think I'll remember to do that???

I just hope that the Neulasta continues to work past the time when I get the cast off. I'd like to have some time where I can truly feel like I'm not living at the cancer care center.

BACKTRACKING FOR A LITTLE HISTORY

The best way to give a little history here is to paste in the signature file I use when I post messages on the NHL (Non-Hodgkins Lymphoma) discussion list or on the NHL Cyberfamily website. Great resources if you're interested. You can sign up for the discussion list on the Cyberfamily website or contact me for email instructions. Here's what I tell the world:


10 years of NHL survival and counting.
In May 1992 I was diagnosed with low grade,
follicular small cleaved cell Non-Hodgkins Lymphoma, but it transformed in Jan 2002 to more
aggressive large cell. I have been through numerous
treatments, including: chlorambucil and
prednisone, fludaribine, 2-CDA (cladribine), CVP,
Rituxan alone, Rituxan with interferon, Zevalin, Rituxan
with creatively modified versions of CHOP/CVP. Currently
on Rituxan plus half dose of Cytoxin, and
regular doses of vincristine and prednisone. Too
soon to tell if this is effective, but it seems promising. My bone marrow has
been wiped out through these treatments (especially the
fludaribine and zevalin), necessitating frequent
platelet and blood transfusions since Jan 2001.


That's it in a nutshell. Lots more has happened during those 10 years than that, but we'd be here til next year if I started in on those stories.


Oh, I guess I could also say that I'm a 50 year old (Hooray for making it to 50!!!) woman with two adult children whom I admire very much. I'm on disability due to my health situation, but I also teach an online course called the Exceptional Child at Oakton Community College. If you want to know more about my online course, you can see the preview that I put together for prospective online students.


My main focus in my life and in my writing is not "Oh, poor me. Look at the terrible things I'm going through." As the title of this journal indicates, I have managed to find a lot of joy and new interests in my life during those 10 years and I plan to keep on doing so. I'm having a lot of fun, and as a side benefit of being "disabled", I have a lot of time to enjoy and pursue my interests.


In fact, my online teaching is an indirect result of my health worsening, and it couldn't have come at a better time. I had been teaching a traditional version of the Exceptional Child course on campus for about 5 years, and going to every free tech/computer seminar offered for faculty. Then I turned my traditional class into an increasingly tech-supported distance learning version, which was offered simultaneously on both OCC campuses in TV studio classrooms, with an online component. That was fun and just whetted my appetite for more technology.


Then in January of this year, I took a semester off from teaching the course, and instead spent that semester in developing an online version that I just successfully ran as a test version in the summer semester. Now I'm making last minute adjustments and changes, and will teach the "real" version of it starting in a couple of weeks. This development has helped me enormously, because it allows me to teach no matter where I am! The students don't know if I'm on my laptop in a hospital room or at home in my jammies or on campus in proper teaching attire (whatever that is...). And I can work whenever it's good for me. 99% of the course is not in real time, so it doesn't matter what time of the day or night I log on. And it's quite a kick having my "office hours" online in a chat room.


So my life goes on no matter where I am in my treatment cycle. I don't have to call in sick, and it lifts my spirits to read my students emails and online journals and discussions. It feeds my soul to be able to teach, and technology is allowing that to happen, even in my lowest blood count times. I can't catch anything by computer (other than a computer virus, but I've had my Norton Anti-virus vaccinations for that :-)

Ain't life grand?

HAPPY DAY!

This is just great! Joel came over and not only did he fix the nagging problem (and maybe a few other hidden
ones) on my computer that was threatening to shut me down just as the new semester is coming up for my online
course, he also set me up with a new toy to play with. The Blogspot! Thanks, Joel!

Actually, now I have two blogspots. After Joel left, I thought that this would be a perfect tool for me to use in my online teaching.
I need a place to write and archive my thoughts and responses on the issues that come up in my Exceptional
Child class. I can direct the students to a particular entry, or just copy it and use it as an email response.
That way I won't have to keep writing the same things over and over again to different students, and I have an
impromptu "teaching file". That teaching-related blog is located at:
http://www.judithw.blogspot.com

My feet are just doing a little happy dance under my computer desk in pure joy for having these new toys and
having my computer back in working order. It was quite a trial not being able to use MS Word to open the
attachments my students were sending me with their term papers in them!

My happy state was also occasioned by having a relative vacation from the Cancer Care Center this last week.
Because of Medicare turning down approval for a visiting nurse to come out and give me my daily Neupogen shots,
(since I have a cast on my leg and can't drive), the docs voted to put me on Neulasta, even though I didn't
meet all the criteria. (Why should I start following rules at this stage of my life???) They are watching to
see that it works okay, but for now, the result is that I only had to go in two days last week instead of the
usual five days. (Too bad I wasn't able to go out and play...) Neulasta is only given once in 21 days, so it
has significantly affected my morale for the better! Long may it work!

The ortho doc says my cast will come off on Wed, Aug 28. I can't wait! Although the cast is quite cute and matches
my little blue VW Beetle (which I can't drive!), it is also enormously inconvenient, especially now when almost everyone I know is out-of-town on vacation! But I have had a lot of fun racing up and down my long (hardwood floor) hallway on my computer
chair. It excites my inner child, which is becoming more "outer" the longer I have this cast on. Cast off!
is what I say. I'm ready for a different type of voyage.

This is my first entry. Joel helped set me up. But Blogger did the heavy lifting.