Vacation's Over

Well, as soon as Dr Lestingi saw the node under my arm, and said "Oh, wow" I knew my chemo vacation was over. He gave me the choice of waiting a couple of weeks longer and watching it (until the new semester starts???) or just taking prednisone for 5 days to shrink it temporarily (and then get treatment again anyway when the prednisone wore off) or getting treated today. I chose today, after the pain I've been having there the past couple of weeks.

The other deciding factor was when we saw that my WBC was going down, especially the neutriphils. That's probably due to the lymphoma. Better to get it over with, I say, than have to be walking on eggshells for the next couple of weeks... Oops, not eggshells. They have too many germs on them. :-) I'm supposed to be at least moderately careful about germs and fresh fruits and veggies, since my neutriphil count is under 1. The good news, though, is that I'll get a Neulasta shot tomorrow afternoon and my WBC should shoot back up to reasonable levels.

Here are today's counts. (Look at that platelet count!)
WBC 2.9 (neutriphils 0.8)
HgB 13.8
Platelets 221

Well, I guess on prednisone New Years Eve should be lots of fun. I shouldn't have trouble staying up to watch the ball drop. Hope I don't dance on any tables or do anything else too embarrassing.

Happy New Year to all!

WBC Creeping Down...

I'm still on vacation from chemo--at least until I see the doc again on Monday. However, my WBC is starting to descend a little. It's been almost 6 weeks since that last Neulasta shot. Of course, those little whilte cells got quite a work out fending off the colds/flus and other infectious agents I was exposed to in Peoria before Christmas, so I can't really complain.

Here are my counts for the day:
WBC 3.0 (neutriphils 1.0)
HgB 13
Platelets 191

I'm hoping to continue on vacation or on something less toxic than the chemo, but that remains to be seen. The nodes under my left arm have been particularly bothersome in the past couple of days. Last night I broke down and took my first real pain pill in months. Tylenol just didn't do it. But I've been lugging heavy suitcases, bags of presents and groceries, as well as doing a lot of driving, so that may have aggravated them. I'm giving those pesky nodes a vacation by doing next to nothing today. Maybe I'll repeat that tomorrow.

Open Wide...

I actually went to the dentist for a regular checkup like a normal person yesterday. No platelet transfusions, no antibiotics, only a semi-uncomfortable teeth cleaning and the bill. Oh, and also the news that I need more dental work. Who would ever think I would celebrate that!

Good News and Maybe Bad News

The good news is about my counts. They are continuing to be good.
WBC 3.9
HgB 13
Platelets 201 (yes, you read that right!)

The (maybe) bad news is an enlarging node under my left arm that has been bothering me this past week and causes pain in my left arm and chest. I'm hoping it's just a "reactive" node--a reaction to an infection or some other stressor--rather than a lymphoma problem. I will have to check in wtih the Cancer Care Center late Monday or early Tuesday (before they close for the holidays).

That means my trip to Peoria will just be a day or so shorter. At least I'll get to be there when Dave and Dianne and Lauren and Cynthia and Dianne's daughter Katie are in town. I'll get to see everyone, so that will be nice. And then I can spend Christmas (which I don't really celebrate anyway) with a friend or two who are alone for the holidays. Works out well all the way around, so I won't complain.

And maybe when I go in next week I'll get good news that the node is just a passing phase...

Great News!!! A Vacation from Chemo!!!

My counts were great yesterday. My platelet count was up to 189!!! Between the good counts I've had for a few weeks and the reduction of the nodes/tumors on my CAT scan, the doc says I get a vacation from chemo at least for this month. He will re-evaluate on Dec 30, and may extend the break if nothing seems to be growing fast.

I am sooooo happy. I've been in treatment nonstop for about 2 1/2 years and I NEED A VACATION!!!

A whole CAT now ... and not a bad looking one at that

Okay, I finally got the results of all three parts of the CAT scan. Here is a summary of the chest results:

1. There remain enlarged axillary lymph nodes, however, they have decreased considerably in size and number in the interval and some of them continue to be enlarged measuring over 2 cm. However, many of them are less than half the size of prior exam. The extensive mediastinal left hilar adenopathy seen on prior exam has now totally resolved with a few small residual lymph nodes seen measuring under 1 cm.

2. The cavity lesion seen in the medial segment of the right lower lobe on prior study is re-identified, however, is now considerably improved, much thinner than on prior study.

And here is the summary of results for the abdomen and pelvis:

1. Mesenteric and retroperitoneal adenopathy have greatly improved in the interval since the prior exam. There is a new lesion projected adjacent to the left hepatic lobe/pancreatic tail and just above the left adrenal gland not seen previously. It may represent a new region of adenopathy, however, liver mass cannot be excluded as it does appear to be contiguous to the left hepatic lobe.

2. There are two lucent masses seen in the left side of the pelvis. One is likely ovarian that was probably seen previously more superiorly and laterally as it was previously displaced by adenopathy. More inferior to that is a lucent mass with a high-density rim and that may be ovarian as well. However, it may represent necrotic adenopathy. There is continued evidence for enlargement of left external iliac nodes and right iliac nodes. The latter right iliac nodes may actually involve the ovary. This is not certain as the ovary cannot be seen separately from that. Despite the regions of residual mass/adenopathy, the remainder of the pelvic adenopathy seen on prior exam has largely resolved or greatly improved. Bilateral inguinal adenopathy seen on prior exam has largely improved. There is some residual.

All in all, it reads to me like there has been a lot of improvement. I'm hoping for a break from chemo for awhile, although Dr Lestingi said that when we decide about a break, he might want to continue the Rituxan for awhile. That's okay with me, as long as it means no more prednisone for awhile. We'll see what he says when I see him on Monday.

In the meantime, I still have a lot of unanswered questions. The reports don't even mention the extranodal tumors on my lower back and shoulder blade that feel huge to me. I also want to see the actual images and have Dr L explain the areas where the nodes might be a problem, and especially that liver area.

I'm going to be bringing the films or the images on a CD (if I can get that) to Peoria with me when I go in a couple of weeks. It's so nice to have a father and a brother who are radiologists. I need a (free) consult!!! :-)

A Third of a CAT

How frustrating is this? I got a CAT scan of the chest, abdomen, and pelvis, and the radiologists only sent the report of the chest! That's not even the important part--or at least I didn't think so. The news on the chest is that all of the axillary nodes have shrunk to less than half their previous sizes. The largest is now 2 cm.

However, they also talked about a cavity lesion in my lung--right lower lobe--that I never heard of before. But in this report they say that it is considerably reduced. Well, that's good news, but how come they didn't put it in the previous report? It was obviously in the previous study. And they didn't even comment on the growth on my shoulder blade. Hmmmm... I think I need my brother the radiologist to reread these.

We're going after the rest of the report tomorrow. (The center has already closed for today.) I'm calling them first thing and telling them to email the whole report over there to Dr Lestingi ASAP. I need to know about the rest of it. And we have to decide what we're doing about further treatment.

But I guess I can't complain about the news so far. Shrinking nodes are good. A smaller lesion is better than a larger one, even if I didn't know it was there. Tune in again tomorrow for further developments.

Great Counts Today

My counts were wonderful today. Must have been all that good food I've been stuffing my face with during the past week.
WBC 6.8
HgB 14.1
platelets 151

I also had my CAT scan very early this morning. I feel icky from all the dye, but this too shall pass. I won't get the results until tomorrow or Wed.

In the meantime, I'm watching the snow fall. We're supposed to get 6 inches here by the lake. The trees look beautiful.

Midweek Update on Low Platelet Count

I went in today and got my counts redone. We were right to hold off on a platelet transfusion Monday when my platelets were 15. They are on their way up by themselves. Today my platelet count was 35. I expect by next Monday my platelets will be up over 100. I will also get a CAT scan that day.

In the meantime, I'll head for Peoria tomorrow morning, arriving in time for Thanksgiving dinner, after flying along the deserted highways that tonight look like a nightmare. Over the river and through the woods...

Happy Thanksgiving to all.

Red, White, and Blues

Reds are good and so are whites, but I've got those lowdown platelet blues again...

Actually the platelets didn't go down as far as they did last round, so we're going to rerun my counts again on Wed before deciding if I need a platelet transfusion. Here are the numbers for today:

WBC 7.9
HgB 12.9
platelets 15

So everybody join in visualizing high platelets (plates up on a shelf??? plates at the top of a building???) for me between now and Wed morning. Counts look good for traveling on Thurs for Thanksgiving. I'll bring the tofu turkey...

My Anti-BMT Doc Story Was Published Online

I have belonged to the NHL listserv online support group for a number of years. (See NHL Cyberfamily Website or Yahoo Groups for details on joining. The group is called NHL.)

A few days ago, when I was posting on that list, I referred to the story of my first consultation (or face-off) with a Bone Marrow Transplant doctor six years ago. (I told this story at my 50th birthday party, so you may have heard it.) One of the members of the list also runs another website called LYMPHOMAtion: Patients Against Lymphoma. Karl asked me if I would contribute my story to his site, and I agreed. I wrote up the saga and sent it to him.

What fun! You can now see it published at LYMPHOMAtion under patient-to-patient support, patient stories. It might take you a couple of tries to get to my story, but you'll see interesting things along the way. The title of my story is: "The doctor may be the expert on the procedure, but I am the expert on my body and my life."

I feel so famous. :-)

My Predni-Zoned mind was having way too much energy for sitting home today, so I took it out for a long walk along the beach (Lake Michigan). It was a beautiful fall day here, in the mid 50s. I stopped at the Whole Foods deli and got some food for a picnic in the park. It was great. And I even managed to find my way home without too many detours, although I did have pockets full of pretty rocks and beach glass...and a lot of sand!

An Historic Event

Today, for the first time in YEARS, my white blood count, hemoglobin and platelets were all within normal range.
WBC 4.9
HgB 12.2
platelets 154!!!

Wow.

Of course, with such good counts they immediately gave me chemo. Can't let counts like that stand too long. The treatment went well and I'll be on prednisone for the next 4 days.

I also saw the doctor today, and he said after this round I'll get CAT scans to determine what's happening with the enlarged nodes in my abdomen and pelvis, as well as the extranodal tumors on my back. We know I'm doing well with solving my blood/bone marrow problems, but we don't know how well this chemo mix is working with the more aggressive lymphoma sites.

In the meantime, I'm just going to enjoy my good counts. Party time in the Predni-Zone...

Good Counts Today

I was quite happy with my counts today. It looks good to go for my treatment next Monday, assuming they keep up this way. I'm hoping treatment will be next week so that I'm not on prednisone for Thanksgiving.

WBC 8.1 (normal)
HgB 12.9 (normal, and not with any Procrit for the last two weeks!)
platelets 85 (doubled since Friday! Yippee!)

Since my counts were so good today, I don't have to go in again this week. Just show up for my doctor's appointment and (hopefully) chemo next Monday morning.

I am getting put back on Elavil because of nerve pain and sleep disruptions. I had been on it, but we discontinued it a couple of weeks ago when we were getting rid of unneeded drugs to help lower my liver enzymes. Since going off of it, the neuropathy has worsened and I'm not sleeping nearly enough 3 out of 4 nights. I'm quite happy to resume it.

also because of the worsening neuropathy, we are discussing discontinuing the vincristine weekly doses and just doing it with the whole mix every 3-4 weeks. That's in effect what we've done this time, but not planned that way. Sounds like it's time to make it a plan. I'll see what Dr Lestingi says on Monday.

Luck Continues

My refusal to succumb to the dreaded "caution" signals that my low counts set off on Monday was a good move. My counts are pretty good today, and I had a nice few days eating what I wanted, doing what I wanted, spending a lot of time outside and generally enjoying myself.

WBC is up to 8 (neutriphils up to 5.2!) -- In Normal Range
HgB is up to 13.1 -- In Normal Range
platelets still low, but not worrying at 41

I didn't even need my Procrit shot this week because my hemoglobin has been so good. I go in on Monday again to get rechecked and perhaps to restart the weekly vincristine, depending on what my counts are doing. In the meantime, I'm planning on having a fun weekend. I've actually already started. I'm about to go out to eat with friends for the second time today. I'm such a social butterfly...

Feeling Lucky Today

I had a wonderful day today. The weather was beautiful, so after doing some grading I promised myself to finish, I took myself outside for a long walk along the lake, with lots of stops along the way for enjoying the view and thinking happy thoughts.

I am so lucky to live in such a beautiful place, have such great friends and family, get to do what I love (teach), and actually have the time and the wit to enjoy it all. Not to mention all the great support and medical people I've surrounded myself with. Can't forget them!

Thanks were sent out into the cosmos for all of you who have contributed to the place and state of mind I'm in right now. I am blessed to have you all in my life.

Platelet transfusion

I went in this afternoon for my platelet transfusion. I still don't quite believe my platelet count was that low. Why didn't I have any symptoms of it? No bruises, no bleeding, no red spots on my lips or in my mouth... I'm going to have my counts redone on Friday to see where I stand.

In the meantime, I've been exhausted today. I couldn't sleep last night. I was up til 4am, and then got woken by a phone call at 8am. I also have been having a lot of sinus problems today. I'm hoping I'm not coming down with a cold. That's what it feels like tonight. I need some good sleep, and an easy day tomorrow. I'm not planning on going anywhere, just doing a little laundry.

Not Again!

I was really taken by surprise this afternoon when my platelet count came back as 8. I haven't been having trouble with my platelets for 2 1/2 months. I got spoiled by not having to even think about it--other than to brag about how high it was. Guess I forgot to knock on wood. So back I go tomorrow afternoon to get a platelet transfusion--my first since Aug 19. Damn. Maybe it will remind my bone marrow to start producing again. I know this is the week after chemo, and my counts are supposed to be low now. Just not this low. Last month the platelets got down to 34, but then bounced up over 100. Let's get bouncing again!

My WBC was okay at 3.9, but the neutriphils were a little too low again at 0.8, so I didn't get the weeky vincristine. Fine with me. I didn't want to get it anyway. The neuropathy in my fingers has been bothering me more recently, and vincristine is the culprit for that. I hate not being able to open bottles or packages. I had to have someone else open my granola bar today. Well, I suppose I could have ripped it open with my teeth, but I was trying to be couth for a change.

It's a good thing I had something fun to do after the blood count fiasco. I got a chance to showcase my online course again and I had a lot of fun with that, even though most of the people there were the online faculty. Talk about preaching to the choir. But it was fun exchanging ideas and getting some pats on the back. They're now scheduling me to do another demonstration for prospective students this time. They thought my course would be one of the more fun to hear about and to look at. That was nice to hear.

I'm Back....

I've been decompressing from my trip to Peoria. My dad is home from the hospital and has another test to go before the docs will be pinned down to a course of action. PET scan was scheduled for this afternoon, and then two doctor appts for him on Monday. Those will hopefully be involve some definitive news about a plan for him.

I decided I needed some rejuvenation on my way home this morning, especially since it was such a beautiful fall day. I drove by way of Starved Rock, hiked into one of the back canyons, climbed up into a big cave and sat on big rocks, surrounded by bigger rocks, looking out at the beautiful leaves in the sunshine and meditated for awhile. I needed some grounding, and that was the best way I could think of to get it. Can't get much more grounded than being surrounded by living rock in the midst of a forest! (It's sandstone canyons there, so part of the "rock" came home with me in the car. I'm still finding sand pouring out of unexpected places...)

The rest of the drive was uneventful but accompanied by loud sing-along to the tape I happened to have in the car. An all around nice return journey.

Treatment Day Finally!!!

With the daily shots of Neupogen since Thursday, my WBC and Neutriphils were up enough today to get my long delayed treatment. However, it looks like I traded a few platelets for the neutriphils. That's okay. With my platelets being up to 130 last week, I had enough to spare. Today's counts were:
WBC 8.4 Neutriphils 3.7
HgB 13.7
Platelets 71

First thing I did when I got my WBC results was to eat an apple. I miss those fresh fruits and veggies when my counts are low. After that the treatment went fine. The only glitches were with the chemo pump, but after the third annoying beeping episode, I just whomped it a good one and it settled down and behaved itself. You have to show these machines who's boss... At the end of the treatment, I stopped for a nice veggie burger, fries, salad (yippee!) AND a piece of cherry pie on my way home. I feel it was well deserved and it definitely was relished (ketchupped too!)

Oh, stop groaning...

My plan now is to get my Neulasta shot on Wed morning, and then drive from there down to Peoria. I think my dad my be out of the hospital by then, so we can visit at home. I'll probably be in Peoria til Friday. I will still be available by email or cell phone when I'm down there, so feel free to contact me.

I've talked to Dad and Mom by phone a couple of times. There's no news yet on what his next treatment is going to be. It seems to be difficult to get all the docs together to talk about it at once. I threw in a suggestion from my onc doc too. One of his partners is running a study for using Gleevac with sarcoma like my dad has. Don't know if dad would meet all the criteria for the study, or want to do it, but it's one more option to toss on the table for discussion, should the docs ever all show up.

Oh yeah, I had my own check up with the good Dr L this morning. Many of my nodes have shrunk. It's the extra-nodal tumors (not in the nodes, but in fatty, subcutaneous areas) that are being stubborn. I showed him the new one I found on my shoulder (about 5 cm). I have a couple others on my lower back that we've been watching for awhile, but the biggest one is deeper in, but we were finally able to measure it (after I assumed a contorted position, which if it's not a yoga posture, it should be). It was 8 cm. Those I am not happy about. They may take longer to get rid of. We'll keep measuring them after these (maybe, hopefully) last two chemo sessions and see what happens with them. Send them some shrinking vibes when you think of it. Think melting, shriveling, disappearing... Ahhh, how seasonally apropos! The wicked witch on the Wizard of Oz! I'm melting.............

No hospital visits for me

I just found out that my dad is in the hospital, but I can't really go down and visit him. My neutriphil count is too low, and the last place I should be is visiting in a hospital. I wish I could be down there in Peoria, but I trust that my brothers have it under control.

Now I just have to get these white blood cells higher so I can get back to normal. I've gotten spoiled not having to go into the Cancer Care Center and having good blood counts the past two months. It's hard to have to be so careful again. Hopefully this will be a short lived trend. I liked the freedom I had gained, and I don't want to give it up for any significant period of time.

The Good, The Bad, and The Ugly (revisited)

The good news is that it's been 10 weeks since my last transfusion and my platelet count today was 130 and my HgB was 13.0!!!

The bad news is that my WBC was still 2.3 with the neutriphils only 0.5, so they sent me home for the second week in a row without treatment. I'm doing a little interim Neupogen til next Monday to see if they can get it up high enough to treat me. The day after treatment I can get the Neulasta again, which has worked so well. They can't give me Neulasta now or they would have to delay treatment for another 14 days. Don't want to do that.

The Ugly is that I have found a new large growth on my back on my shoulder blade. It's almost 2 inches across. I don't know if it's suddenly turned up or if it's been there growing awhile. How often do I look at my back??? I found it by accident on Tuesday because there was a little light bruise on top of it that I hadn't remembered seeing before, and I wasn't aware of hitting anything in that spot. As soon as I touched it, I could feel the big lump. A real, "oh sh*t" experience.

I don't know if it's a lymph node (strange place for one...) or if it's another of the subcutaneous extra-nodal tumors I've had on my lower back. They took out one of those for a biopsy back in Feb and that's how we found out that my low grade had transformed to large cell.

I see the doc on Monday and we'll talk more about it. The nurse looked it over today and talked to the doc about it. Unfortunately he was in an emergency at the hospital or I would have marched right over to him and bared my shoulder... However, since a couple of the other ones are on my butt, that might not have been a wise plan after all. He'd want to check those too.

It makes me nervous that I've had to delay treatment for two weeks with this new growth there, but I can't do much about it, so I'm deciding not to worry. I'm concentrating on my great platelet count instead. And I'll plan a fun and busy weekend to distract myself til Monday.

WBC nosedive

Change of plans. Instead of getting my chemo today, my WBC had dropped too low (or at least the neutriphils did) and they sent me home. Chemo is rescheduled for next Thurs.

Speculation is that the drop might be tied to this sinus infection I've been fighting. I was on Zithromax for 5 days and that seems to have cleared the infection part of it, but I still have some congestion--allergy or virus?? Who knows. The other theory is that my WBC bounded up too fast this time with the Neulasta, and so it got pushed out of my system before the 3 weeks was up.

Whatever... I have a week's respite from the dreaded prednisone. Of course that means I will be on prednisone next weekend instead of this weekend, and I've been invited to two costume parties that Saturday. Hmmmmm... Halloween parties in the Predni-Zone. Could be interesting, I suppose. I'll need a keeper, though. :-)

Actually my counts were pretty good except for the neutriphils. I'm really glad that my platelets stayed up in the triple digits. Counts today were:
WBC 2.3 (but neutriphils down to 0.5 -- no salads for me)
HgB 11.4
platelets 103

So I guess I really can't complain, although I will if I have to get
the masks out again! And it better not be too long til I can have my
fresh foods. Maybe I should go in on Monday to get my counts checked
again. Or not. I suppose I could just be patient, as long as I'm
feeling okay. Drat.

Setting a New Platelet Record!!!

I realize I didn't post my counts last week, so I'll post them now along with this week's fantastic counts I got today.

WBC
last week: 11.1
today: 5.8 (still in normal range)

HgB
last week: 11.8
today: 11.5

And the MOST IMPORTANT OF ALL:
platelets
last week: 32
today: 118 !!!!!!!!!!!!! Triple digits!!!!!!!! It's been YEARS since I've had platelets in the triple digits. (Theme from "Rocky" playing in the background as I bound up the apartment steps...) Definitely time to go hiking again on BIG ROCKS!

It has now been almost 8 weeks since my LAST platelet transfusion.

Also Dr Lestingi says that my nodes seem to be shrunken down to the level they were 2 or 3 years ago. At the end of the chemo cycles (2 more to go) I'll get a CAT scan for a more scientific measure of the nodes, but we are very happy with the estimate. Dr L joked that we should send these results to that transplant doc who said my bone marrow would never recover without a transplant. HA! Showed him! Try to scare me, will he? Try to write me off? I ain't done yet. :-)

Oh, I forgot! (What a surprise...)

I forgot to tell you that I had a doctor appointment and good old Dr Lestingi was soooo proud of me. Not only were my counts great, my nodes were much smaller. He upped the dose of cytoxin a little, since I've been tolerating it so well with the Neulasta. He said we'll do two more rounds of the Rituxan + CVP after this one and then do the CAT scans again to see what's happening inside.

And I am now going on 6 weeks without a platelet transfusion!!! Monday will be the 6 week mark. And I am now officially a ONCE A WEEK blood draw! I only have to get my counts checked once a week when I go in on Thursdays for my weekly vincristine. I've finally made it to going to the Cancer Care Center only once a week (except for the neulasta shot the day after the big chemo, which I'd better not forget again! See the previous post for details on that little snafu.) So two weeks out of three, I only have to go in once. Wow. Time for a vacation!

I'm Way Behind on Posting, and also a Little Nutso...

I'm assuming it's the prednisone that's been turning my brain into swiss cheese and not incipient senility. It's hitting hard this time. Here's what's been happening:

I did indeed have my next biggie chemo on Thursday. My counts were good. Platelets were 88. They said I would probably get up over 100 if they let me go another week without treatment, but we are on a roll here. The treatment went well. Except for the swiss cheese brain aftereffects.

So far, I've forgotten two important things. I forgot my office hours online with my students, even though I WAS ONLINE AND HAD A NOTE RIGHT ON THE FRONT OF MY SCREEN!!! That was embarrassing. Then I was supposed to go back on Friday (yesterday) afternoon for my 24 hours after chemo shot of Neulasta. I forgot all about it. I forgot to get anyone to drive me. I forgot it even existed. Luckily, my wonderful nurse Ann called me at 4:45 to ask where I was. At first I didn't even know what she was talking about. Then she mentioned the shot and I had one of those Oh Shit! experiences. She was nice enough to stay after the clinic closed at 5:00 (on Friday!!! The woman's a saint!) so I could rush over there (driving VERY carefully in rush hour traffic, sticking to the back roads). I got there and back safely and then hung up my keys... Not sure what to do with my brain.

And now it's Saturday night and instead of worrying about all my disintegrating brain cells, I went out to a movie with Mary and laughed instead. Mindless, funny, light entertainment was about my speed tonight, so we saw "Sweet Home Alabama" and enjoyed it very much. No convoluted plot lines for me to remember, and it reminded me about some of the fun parts of the years I spent in Georgia. Great parties, lots of dancing, fun music, and total lack of judgment... Oops, this is a family-read site. Skip that part.

Erin and I will have fun tomorrow on a Lakefront cruise fundraiser that we got free tickets for. (Thanks, Mo and Corinne, for double booking your events so we got your tickets!) We'll be cruising the lakefront, gazing at the skyline and out over Lake Michigan, eating one of the best brunches I can remember... Should be fun on prednisone. I'll try not to dance on the table... However, maybe I should make myself a note about taking some Dramamine before going on board. Think I'll remember to read the note????

Good Foot News

The ortho doc says my foot is healing fine and I can increase my walking and other activities as I'm ready to do so. He said any aches and pains will be from protesting muscles, not a refracture at this point, unless I do something really drastic. I don't plan to. He also said the pain in my thumb and elbow are more likely arthritis than stress injury. He took xrays and said that's what it appeared to be.

Tomorrow (well, actually today, since it's after midnight here) morning is my appointment with the onc doc and then the full chemo, unless something is seriously out of whack that I don't know about. It will be a long day at the Cancer Care Center, starting with my appt at 8 am... So why am I still awake???? Am I anticipating the prednisone now? It's not enough to be awake for most of the next 5 days, I have to add a day in advance?

I think I'll try going to bed again. I must be tired now.

Disorientation

It's Sunday night. I'm planning for tomorrow morning and realize that I DON"T HAVE TO GO GET MY COUNTS DONE! I don't have to go there til Thursday. Oh my. Major disorientation. What will I do on Mondays now???

I'm sure I'll think of something. :-)

I am the queen of blood counts...

My blood counts are so good, I don't have to come back to the Cancer Care Center until next Thursday, when I'm scheduled to see the doc and for the next round of the big chemo mix. A week off!!! I can't even remember when the last time was that I could be away for a week. Over a year ago maybe. Wow.

Today's blood counts were:
WBC 6.5
HgB 11.7
platelets 82

Isn't that amazing?? And today is the one month anniversary of my LAST PLATELET TRANSFUSION!!!

Zippiddy doodah day.

Counts stay up although energy is down

Of course, the energy level being down could be caused by all the choir stuff I've been doing in the past week. The most intense was last night until nearly 10pm and then back this morning at 9 til 1:00 this afternoon...and I even left early! I don't have the stamina I used to.

However, I am cheered by the good blood counts today. It's now been 4 weeks since my last platelet transfusion!
WBC 10.3
HgB 11.7
platelets 48

I have also been having aggravating pain in my left thumb, arm and elbow. Could be neuropathy from the vincristine or could be an aggravated tendon which comes and goes depending on whether I'm on prednisone or not. The jury is still out on this one. I'm supposed to see the ortho doc next week for a follow up on my foot, so I'll ask him about it then.

In the meantime, I'm ready for the holidays to be over and life to get back to what passes for normal for me. These religious celebrations are too exhausting!

Roaring back at the universe-- HA HA!! Good Counts! (in many senses of the phrase...)

I went in for my one-week-post-big-chemo labs and my weekly vincristine and procrit. Good news abounds.

My platelet count went from 21 on Monday, to 24 today. Looks like it's not going to crash, just bounce back. HgB is 12, and WBC is
12. I'm in good shape for a week after chemo. My bone marrow seems to be working, albeit with a lot of support.

HA! I say to the universe. So there! Pppfffffftttt! Try to get me down with almost two years of nonexistent blood counts and constant transfusions, will you? I haven't had a platelet transfusion in 25 DAYS!!! HA! I am strong, I am invincible, I am woman....

(knock on wood...)

Sleep-deprived Night + End of Prednisone + 5 hours of Blood Transfusions = Long, Spacy Day

Not to mention the headachy, rundown feeling both from the prednisone crash and the low hemoglobin (7.5), and the stomach blahs (could be from that bag of sour cream and onion potato chips at 1 a.m., but it's not my fault! The prednisone munchies made me do it!) I sincerely hope I feel better tomorrow than today.

I seem to have less tolerance for these long transfusion and treatment days as time goes on. I thought going to the Cancer Care Center less (as I have been recently) would help my morale and patience on the days I do have to be there, but it seems to be having the opposite effect. Having gotten a taste of freedom, the confinement feels more intolerable. I guess I didn't have that much to compare it to before, but now I do. I've been teased by the possibility of a more normal life and now it's hard to stuff my impatience back into the box when I have to be "sick" again. Of course, in the long run, maybe this is a good thing -- pushing me out of the sick mode and into life again. I'm just not quite there yet, and the transition is nerve-wracking.

The Monday after chemo blues

Here I am on my last day of prednisone for this round, and I have really wacky blood counts. My WBC went up to 32.5, thanks to the overachieving effects of the Neulasta. I hope it saves some of itself for two weeks from now... My platelets were still good (for me) for the week after chemo at 21. Hope they bounce back up around 70 again where they were last week. However, the problem child of the blood counts today was my HgB which has bottomed out at 7.5, after a couple of weeks of bouncing up and down between 8 and 10. Boo! That means missing my support group again tomorrow at the Cancer Wellness Center and going to the Cancer Care Center instead for a blood transfusion for about 5 hours. Fun and games...

Probably this is all due to the talk last Friday about only going into the CCC once a week, instead of twice. HA!!! I must have forgotten to knock on wood... Now I get to go in 3 times this week. Better not be more than that! That'll teach us to speculate without proper voodoo techniques to ward off the evil eye. :-(

Dear friends and family,

Contrary to seemingly popular sentiment, I did not make this weblog to be difficult or to leave anyone feeling left out of the news. On the contrary, I wanted to make the news more available to everyone with less hassle to me. If you come here to this blog, you can find out how I'm feeling almost anytime.

I just can't take all the repetitious emails I was sending out to my beloved and very well-meaning friends and family anymore. I want to talk about OTHER things sometimes, so I try to cover my health stuff on the website. The short version is that I'm doing very well. My blood counts are WAY up. I have had very little problem with the treatment and prednisone these last few days. I finish it tomorrow. We'll see what this week brings, but things are looking up.

I go in for blood counts tomorrow, as a follow up to my treatment last Thursday. I'll have to go twice this week, but we are actually contemplating having me only go in once a week most of the time, if my blood counts stay on the upswing, especially the platelets. Wow. I might actually have to get more of a life! Just a few weeks ago, I was having to be there EVERY DAY. Now only once a week? Astounding!

I've been pretty busy too, between the visit to my family after my dad's surgery, the Jewish holidays, Erin living here, and my apartment being occasionally used as a refuge once again for the over-stressed. I forgot what all that is like when I had a few months of peace and solitude and semi-independent living... Of course all that peace and quiet was a little boring too.

At least I don't have a cast on my leg any longer. Instead I entertain a cast of thousands...or at least it seems that way sometimes. This afternoon peace and quiet has once again temporarily descended. I even took a walk over to Lucky Platter for a delicious and quiet early dinner. That's the longest walk I've taken since my cast was removed, I think.

I'm having a blast with my new online class. I have a couple of wacky student stories, but luckily the wackiest one dropped the class. She didn't even know how to turn on the computer... In fact, she didn't even HAVE a computer! How can you sign up for an online class if you don't know how to use a computer????

I'm giving a presentation on Friday afternoon to the Advisory Board at the college about my online class. That's going to be fun. I'm attaching below (for those of you who are interested) the handout I made for it so you can see what I'm doing. I love this stuff, and am probably going to be telling the advisory board way more than they wanted to know, but hey, what the heck... I'm in charge. It's my 15 minutes of fame.

-----------------------
Explanation which might be boring to some, but tells you what it is I do for a living these days

ECE 180 The Exceptional Child (Online Version)

Preview of ECE 180 Online: The first contact most students have with my online course is the Preview website, where they can find out what the course is like and if it’s a good match for their skills and learning styles. This is especially important because of the heavy emphasis on reading, writing and self-motivation that an online class requires.

Preview website:
http://servercc.oakton.edu/~teach/sampleofECE180fall.html

WebCT: The usual format for this class is on WebCT, which is limited access. You need a login ID and a password. On our WebCT site, we have the course syllabus, “Your Instructor,” course calendar with due dates, Program Observations description, chat room for the instructor’s office hours (fun!), weekly online discussion topics, weekly assignment choices, and the private online journals for each student’s responses to the weekly assignments s/he chooses.

This private journal can only be accessed by the individual student and the instructor. This is a dialog journal, where a student posts a response to an assignment, and then I give feedback and a grade, and often other ideas for the student to consider. Sometimes there is a longer “conversation” that takes place about a particular assignment, depending on the student’s interest and enthusiasm.

WebCT login address:
http://online.oakton.edu:8900/webct/public/home.pl?action=print_home


Very Necessary Backup Website: All course information is also available on the backup website on Oakton’s servercc, which is freely available. (No excuses, like “I couldn’t get on WebCT…”) Samples of the discussion questions are posted on the alternate discussion board (Discus) and available by link from the backup website, although most of the time the discussions really take place on the WebCT discussion board only. Any emergency (or misguided) discussion postings on Discus can later be moved or copied to WebCT.

The private journals for assignment responses are only on WebCT. In an emergency, entries can be posted on Discus from the backup website, but that is not private, so I wouldn’t post a grade or feedback on there. In such a case, I would only give feedback by email directly to the student. Later I would copy the entry and my email feedback to the student’s private journal when WebCT was working properly again. A student could also email a journal response to me, but at times there has been a problem of emails getting lost in the ether. A discussion board format is better, because if the student can see his/her work there, so can I. And only I can erase it.

Backup website:
http://servercc.oakton.edu/~teach

Instructions by email and blog: Frequently in the beginning of the semester, and less frequently as time goes on, I email instructions and/or my views on topics under discussion to the students.

I also store a copy of all my emailed edicts and instructions and, hopefully in the future, content-oriented spoutings on a weblog, aptly titled “The Instructor’s Ramblings on the Exceptional Child.” This info is always available to students, regardless of whether they have forgotten or deleted the instructions from their email. They can go to the weblog when they have a problem and aren’t sure they remember what I told them to do. The most recent instructions appear first, but all of them are stored in an archive on the “blog”. The blog is available by link from both WebCT and the backup website.

Instructor’s blog:
http://www.judithw.blogspot.com

Online quizzes are done through the publisher’s “Companion Website” for our text, Exceptional Lives, by Turnbull, et al. Students go online whenever they are ready (but by the end of the week for that chapter) and take an open book quiz consisting of 20 multiple choice questions. The website immediately grades the quiz and the results are emailed to me and to the student. The companion website also offers chapter summaries, student-made study guides, links to other sites, and lots more. The companion website is available by link from both WebCT and the backup website.

Publisher’s Companion Website:
http://cwx.prenhall.com/bookbind/pubbooks/turnbull5/

Contrary to what you might expect, most students don’t get perfect scores. Open book tests can be hard and time-consuming. They just think it’s going to be a piece of cake.

My feeling about the open book quizzes is this: I don’t lecture to give the students the information they can get from reading the text. I want to make sure the students at least skim, if not seriously read, the textbook. The online quizzes help me to assure that this happens. I don’t care so much if they remember a particular fact or resource, as much as I want them to know where to find the information for themselves when they need it.

I keep this from artificially inflating their final grades, because the vast majority of the students’ points come from their writings, in the form of two 5-page program observation reports, their weekly discussion postings, their private journal entries, and their interaction/participation with the other students and with the instructor.


Weekly Assignment Choices and Weekly Discussions:

Because I don’t use my time and effort “lecturing” to the students, I have set up a variety of active learning assignments to put them into real life scenarios, mini-research projects, and thought (and emotion) -provoking video versions of reality, to counterbalance the theory they learn from the text. I offer at least two assignment choices each week, and I offer bonus points for some choices that I feel are more valuable, but less convenient to the students, such as some very excellent videos we have in IMS, and an on-campus physical disabilities simulation workshop I run every semester.

I approach the weekly discussions the same way. I post scenarios gleaned from my own or my colleagues experiences, or from the current news reports. Most of these scenarios are true events, although some of them are composites of several similar happenings. This semester I am only offering one discussion topic per week, but that will change as I develop more topics. I’d like to have at least two discussion topic choices per week.

In order to get credit for the discussions, the student is required first to answer my scenario in detail. What would that student do in that situation? The student should then read what other students have written, and choose at least one other student’s post to reply to. Some students confine themselves to that minimum, but others will freely respond to more than one entry. We have had some great discussions. The quality seems to improve as the semester goes on, with the more involved students modeling good, specific interaction to the less out-going and/or more generalizing students. Online discussions are great for students who are shy in class. In an online discussion you hear ideas from all the students, not just the confident “talkers.” Students have the time to think over and revise what they want to say before it becomes part of the record, unlike having to think on their feet, so to speak, in an in-class discussion.

This Semester’s Weekly Assignment Choices:
http://servercc.oakton.edu/~teach/assignonlinefall02.html

Sample of Weekly Discussion Topics and Private Journal Instructions:
http://lego.oakton.edu/discus/messages/26/26.html

My good news continues to grow, along with my blood counts.

Great news again today. It has now been 17 days since my last platelet transfusion and my platelets jumped from 53 to 70 over the past two days. My WBC also went from 3 back up to 5, and my HgB went from 8.4 to 8.9. I'm dancing.

I was actually bragged about to the Amgen rep who came to find out about another patient who had a bad reaction to Neulasta. The onc doc and nurse and I all swear that the Neulasta gave my body a chance to produce more of all my blood cells, not just the whites. Of course it also helps that the Rituxan + CVP is working well. It all adds up to good news for me.

Since my counts were so good, they did change my cycle from 4 weeks to 3 weeks, and so I got the whole shebang today, and the prednisone is kicking in. I've written some long and funny emails to my online students, but I think they weren't too wacky, just humorous ways of getting them the info they needed. Hope they like my sense of humor. Oh, well. I'm the teacher. They have to put up with it. :-)

It's midnight and I'm still WIDE awake... I'd better lay off the student emails for a day or two though. Don't want them to think I'm too weird... Hmmmm... What other trouble can I get into tonight???

Tuesday's News -- A Mixed Bag

Good news with my platelets. They have held at 53 since last Thursday. My WBC is dropping as the Neulasta wears off, and is down to 3.5. My HgB is also dropping, and is down to 8.4.

The plan is that if my platelets are holding on Thursday, we will go ahead with the full chemo immediately instead of next week. This will allow me to get another Neulasta shot after Thursday's chemo (probably on Friday), which will bring my flagging WBC back up. The final decision won't be made until Thursday morning, but they told me to prepare as if it were going to happen. They actually have wanted me to be on a 3 week schedule rather than the 4 week schedule I've been on so far. The chemo is more effective that way, and so is the Neulasta.

If I get the full treatment on Thursday, it will prevent me from attending practice choir on Thursday night and probably Friday night's service, as I will be high on prednisone by then. However, I should still be able to participate in the Rosh Hashana service on Saturday morning, as I usually don't get too goofy til later in the afternoon.

There is also a chance that I will be put on an antibiotic soon. A node in my left leg has been increasingly aggravated--red and warm to the touch--over the past week. It may be a sign of cellulitis infection, for which I would need an antibiotic. I may hear about that later this afternoon. It doesn't hurt. It's just weird. But I hear cellulitis can get quite painful if left untreated.

Barely Hobbling Anymore

I'm doing very well with my cast off. No trouble at all driving to and from Peoria or getting around. The cane seems increasingly superfluous. I laugh at myself when I find myself carrying the cane off the ground while I rummage in my purse for my keys...as I'm walking. For now I'm leaving it in my car in case I have to walk a long way when I'm out. I have my hiking stick in the apartment for a backup if I need it. I don't think I will.

It's also been quite interesting watching my leg molt... I feel like a lizard or something. I'm very flaky these days. Or perhaps that's not a new thing. :-)

Other than that, I'm feeling fine, but a little worn out from the trip. I'm having a quiet day today and tomorrow, and then back to reality on Tuesday. I wonder what my counts will look like then???

Fantastic Week

Remember how excited I was on Monday when my platelet count had gone up from 20 (last Thurs) to 24 (on Monday) without me getting a platelet transfusion? Well, I got my counts done again today and got even better news. My platelet count went from 24 on Monday to 53 today!!! I am officially producing my own platelet cells!!! Even Dr Lestingi came over to the chemo wing and joined in the happy dance. He told me I was unbelieveable. He had thought there was no way this was going to happen. My platelet count hasn't been this good without a transfusion in about 2 years.

So this is my best week in ages. I got my cast off yesterday and checked out fine to drive around in my new little VW Bug. It's a blast. I've been tooling around town, and all those platelets are tooling around inside me doing their jobs too.

Other counts today were:
WBC 6.3 (still well into the normal range)
HgB 9.1 (slowly creepng down, may need transfusing in the next week or so)

It's possible that if my counts stay pretty good that I will move to a 3 week chemo schedule instead of every 4 weeks. The chemo would be more effective against the large cell lymphoma that way.

My chemo nurse, Ann, said that it's a good thing I broke my foot. If I hadn't, they wouldn't have tried me on the Neulasta shot instead of Neupogen, because I didn't fit the criteria. It was a desperation move caused by my broken foot and inability to drive to the center every day. Some silver lining, huh? There are no coincidences...

Erin, Steve and I will be going down to Peoria tomorrow and Saturday to visit. I want to take my new car, regardless of how much smaller the back seat is than Erin's old bomber. Cruising at 70 mph in a new car with a sunroof? Can't beat it.

From the NHL list

--- In nhl@y..., "gregdafoe2000" wrote:
>I hope this is a sign that your marrow is going to start working
> normally again, and you can say goodbye to transfusions for good!!!

Greg,

What a great dream that would be. It's been so long since I could hold my own blood counts without transfusions or growth factor shots, that I can hardly imagine doing without them. I guess I'd better start imagining it!

I so envy people who come in for blood counts and a check up and then go live their lives for 3 to 6 months with no medical stuff in between. At one point several years ago I got up to going 2 months in between appointments, but that was short-lived and frequently interrupted by problems. But maybe I can get back to that and even surpass it!

Right now it just seems like a miracle to me that I don't have to go there every day, only twice a week, and that I only see the doc for "official" appointments every two weeks. That makes me feel so much healthier than just a few weeks ago. In fact, I don't think I've called the on-call doc over the weekend for about a month. You can't imagine what a relief that is--not only for me but for the docs. I was WAY too well known by all of them, although they were very sweet about it.

I want this cast off my foot so I can do a real happy dance. It's just not the same in a cast. Hopefully, I'll be cast-less by Wed afternoon. And then I can drive my new car, too! So many things to look forward to.

Good News!!!

My last platelet transfusion was last Monday. On Thursday they were
debating whether to transfuse me because my platelet count was 20 and
they didn't know if I would make it through the weekend without
needing platelets. They decided to try putting it off til Mon
(today) when I would need platelets for sure, and hoped that I
wouldn't be down to zero again like the last time I went out of
town.

Guess what! I didn't need them! My platelet count this morning was
24! It actually went up! I seem to be producing some of my own
platelets. This is the longest I've gone without a transfusion in
over a year, I think. My counts will get done again on Thursday,
when I will also see my onc doc.

And my WBC is still holding in a good range. It was 7.6 today. It
seems like the Neulasta is working okay. They were worried that the
effect of it would wear off too soon with me, since I didn't meet the
criteria for getting it. So far, so good.

My HgB has been bouncing back and forth between 9 and 10 the past
couple of weeks. It was 9.4 today.

This is so cool. The nurse tore up the order for platelets and sent
me home with cheers. Amazing, huh?

Yesterday was a great day!

I went in for my blood counts and vincristine and found out that my counts were good!
WBC 12!!! (unbeliveable for the week after the big chemo mix)
HgB 10.1
Platelets 20 (no transfusion til Monday)

What a joy it is to get good news for a change, and to only have to go in twice a week! I am tolerating this chemo mix much better, and so far the Neulasta has been wonderful. My WBC hasn't been this high in many years. I can even share food with people without having to worry about germs.

The next good news was that Erin and I traded in my end-of-lease little blue Bug for a brand new VERY SHINY, little blue Bug with a sun-roof. It is fun to look at and ride in, but I can't wait til I can actually drive it myself. It's so weird to get a new car without being able to drive it.

And the final good news of the day was that I was able (thanks to my good counts) to go to choir practice last night. I have only been able to go one other time this past year, and that was last week. There are only two more rehearsals to go until the High Holidays start, so I've got some catching up to do. It was great to sing again with the choir.

Just an all around good day. Here's to many more!

The Bug Passed and the Didjeridoo was a Blast!

My little blue VW bug passed its inspection today with flying colors. It's a good thing that it got all buffed up for the inspector. Now tomorrow I will start looking for my new car. This is exciting, even if I still can't drive with the cast on my leg!

Erin and I had a good time this morning. She drove me to my spirituality and healing group at the Cancer Wellness Center and there was a special program that she could participate in also. A man who plays the Australian didjeridoo and a woman who plays crystal bowls did a sound meditation and healing that was awesome! I couldn't believe the intensity and volume of the sound. It seemed to be everywhere and circling and inside and outside all at the same time. Besides circling the group, the didjeridoo guy came and did a "blast" right into each person's feet. The physical sensation of the sound waves was huge. It literally felt like waves coming up my body from my feet. Pretty cool stuff. I got a CD of a recorded session so I'll try it again with that. It might not be as intense as in person, but they say it is still amazing.

I'm having fun!

A Good but Busy Day

It certainly is easier getting around to my appointments and running errands with Erin around! She got in from camp last night and has already racked up numerous miles in my behalf today. Eventually I'm going to have to give her some time off so she can get her research project set up, but for now, I'm using her wheels all I can. We actually have lots of groceries in the fridge and my car got detailed and is ready for inspection tomorrow--after lots more errands that is! Erin will be desperate to leave home soon...

I got my counts checked, and my WBC is outrageously high at 13.6 (That Neulasta is a blasta...). I think next time they should wait longer after my big chemo before they give it to me so it will last longer instead of being used up too quickly. I think we could have waited until today to give it to me at least, instead of last Friday. I'll have to talk to Lestingi about it when I see him.

My HgB was okay at 9.8, but my platelets were low at 8, so I got a platelet transfusion after having breakfast with Erin at Walker Brothers. There are some side benefits to running errands with me...

I like this new schedule where they keep my visits down to 2 or 3 times a week. It felt so strange to leave there today and say "See you Thursday!" instead of "See you tomorrow." Wow.

Now I'm off to eat a huge salad while my WBC is high (and so am I... This is my last day of prednisone... Crashing should occur in the next 36-48 hours). Bombs away...or Bon Voyage.. or whatever...

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.