Sorry for the delay

I'm so sorry for not updating this earlier .... Hope everyone had a great Christmas.

Got through the chemo okay, and was able to go home on Christmas day. Yipee!
Next few days were okay ... had bouts of nausea that the pill took care of, and today felt tired (to be expected). I need to drink more fluids, haven't been doing a good job on that (shame on me), but have been able to eat a little. Had to take another anti-nausea pill today (Sunday), hoping that things will mellow out as the days pass, which they should. Few other minor things that I won't go into, but manageable. The only thing that will keep hitting me will be fatigue, but I've gotten pretty good at napping.

Next appointment is Tuesday (sweet Paige will take me in to cancer center and back depending if I need transfusion or not), when I get blood work, and doc visit. That should give me (I hope), at least what will be going on next week. It would be nice to get a tiny crumb of good news, but the best I could hope for this soon would be a good lab result (not need transfusion would be nice).

Other than that I'm coping, miss the energy and going to work, but between the chemo effects and the stupid snow, I'd be exhausted driving back and forth right now. Hopefully I'll perk up later in the week (or after New Year weekend).

Not much more to report until after see doctor. Keep those prayers and thoughts coming, they really help.

Love to all

Hospital Chemo day 4

Nothing much happening. No reactions, tolerating chemo okay. Not nauseous, but don't really have appetite. It's been wonderful having visitors, really perks up my day. I'm so blessed having so many wonderful friends and supporters. Really makes a big difference.

Just found out from nurse, that they are planning to release me on Christmas day!! Yahoooo!!!
Have to go in Friday for shot but it's the two week one and I'll still not know what's going to happen next week. Dr. G is pretty sick so another doc will probably stop by later to see me. Doubt he'll know what will be happening, but I'm sure someone will let me know.

That's about it for now ....

Love to all

Hospital chemo day 3

Here it is Monday (day 3 of chemo). All is going well. Day's worth of chemo ends around 11PM, so by the time premeds, etc, it's midnight or so before 'next day' begins. I think there is 5 "days" scheduled so not really sure what day I'm getting out of here or what happens after I do and next week. What else is new. All in all feeling pretty good.

Only thing is swelling in my legs. Dr stopped in this morning (with a smile ... heard he is in a goofy mood .... probably all that snow shoveling....hee hee), and decided to give me some lasix (more peeing) to help with that. Other than the swelling I seem to be doing okay. Got that blood the first day and so far so good.

Sunday was a little blue, but sky was overcast, but a visit from a friend who works here really perked me up. Even had the priest stop by (oh oh is Sue getting religion??? Well, may be a little I'll take whatever works right?). Felt much better in the later part of the afternoon.

Not much more to write ... good food, funny and nice nurses

Love to all

First 24 hours

Was admitted Friday and settled down. Tried my laptop (since KMC is supposed to be most wired hospital) and couldn't connect (low signal strength). I spent most of the evening trying to connect and waiting for IT person. Nice young man came in later and tried everything he could but we couldn't get it to connect. My card and antenna just couldn't do it.

Saturday Jim picked up a wireless card that fits my computer and we tried again. Still had problems, played around with it some more and had to call the tech again. This time (network was called Aruba!) and got the log in/password and was able to connect. Slow, but at least online. Still can't get my email, but I'm working on it.

Anyway, had an old friend who works here stop by for a visit (haven't seen her for along time), then later Lee and Wally brought me a wonderful flower arrangement and a great visit. It's nice I can have visitors.

I'm doing okay, seem to tolerate this first 24 hours okay. It builds up so the time to watch is day 3-4 for possible mouth sores or sore throat. As soon as I notice any feeling then I let them know and they'll give me medication.

Keep me in your prayers as always

Love to all

Bad News

Of course the huge dump of snow (34 inches in 24 hours) happend on the Thursday I went to do the labs, dr., pet scan, dr, chemo thing. Bad enough beginning. Jim dug the car out and took me in. Had all stuff done, and when went to dr. afterwards my pet scan results were in for dr. to look at. Here's where the bad news begins. The tumor was much bigger and of course full of cancer. There is also bone involvement now, and multiple lymph node involvement (there were 3 spots before didn't ask how many more). Any very bad news. Still not as bad as I was before the first treatments, but much worse than after them. He gave a 5-10 percent survival rate, but doesn't' believe in them because so much can be done to skew results. He wanted me to be admitted for hospital stay infusion. 5 days of 24 hour chemo. I could start Friday, wait the weekend, and maybe push over to the new year to start. Talked it over with Jim and we decided to start it Friday. Might as well get it over with. There's a chance I'll be out on Christmas day, but we don't know for sure. As to what waits next I have no idea.

Anyway the doctor still seems optimistic and hasn't ruled out the transplant. If he does that than I think that's pretty much it. But if he hasn't given up then I guess I won't either. Will just take me longer and harder pull to get to the end.

There was a cosmic message sent to me: I lost my cell phone on Weds. Thursday when I noticed it missing Jim let me use his phone. Called work and had Kari look in my room to see if I left it there, nope not there. When I got to the car called and again didn't hear it. Got home and called it and still didn't hear it. By now I was in a panic not only all my phone numbers were in there, but that was the number for all the medical calls. Anyway, I decided I'd try one last time. Put on my mucking boots, and stood on porch and called the number. WOWOWOWOWOW heard it. Called again (voice mail picked up) and tracked it to the edge of the parking space in the snow. Jim came out and went to where I had an idea and slowly shovel by shovel (2 tiny shovel fulls later) there it was at the edge in the snow. Could have been stepped on or more snow put over it at any time. Took it inside, took of the case and dried it .... IT STILL WORK!!!

I've decided that if my cell phone could make it 24 hours buried in snow and still work, then by gum I can still beat this cancer!

Love to all

Sue

My first

Well, had to get the 2 units (A-positive) transfusion on Friday. It took little over 4 hours. Wasn't bad, when it was all over I was tired (got benadryl along with Tylenol prior to the transfusion). Of course that was the evening of the first real snow storm this year. Anyway got home safe, didn't have to go in Saturday to get shot (Tues instead), so spent the day napping and relaxing. Since we didn't have to go in, Jim decided to do shopping on Sunday since he had to go in to look at someone's computer. Strange Saturday, but enjoyable.

I made myself something to eat and noticed it felt like something stuck between my teeth. I used a toothpick and tried to pry it out but it wouldn't budge. Took a look in the mirror and discovered my filling was loose (one between teeth). Just what I needed! Anyway it eventually slipped back into place and Monday stopped at dentist to see if I could get in before crazy Thursday. Have to get an okay from Dr. G before dentist will work on me, and of course he wasn't there today (Monday). And dentist is leaving at noon for a few days off (not that he doesn't deserve it), so only opening was 7am Tuesday and Dr. G doesn't get in until 8-8:30. Since it's between teeth I'm really not worried, but I'll talk to Dr. G (or nurse) tomorrow and get the okay.

Not looking forward to Thursday, only because of the time constraint (Dr. G wants to see me before AND after). After the Pet scan no problem, but trying to get everything done before I 10:30 when I have to check in for the scan is going to be pretty close. They want you to be relaxed and rested the day before. I don't think I'll be that way on Thursday ... LOL

Anyway, feelin' okay except for the usual morning 'crummy tummy' (slight nausea).

Love to all

Something new ... maybe

Thursday went in for bloodwork. Tech had hard time drawing (so what else is new). Waited over an hour for Dr. G (and labs) and found out my red count was too low for chemo (like last time). I asked him what normal was and he said most doctors liked to see 100, he prefers 150, and mine was 60. He scheduled me for neumega shots and more labs. If count isn't up to where it should be with Friday results, then I'll have to get a blood transfusion. If the count is up to where it should be then no transfusion. So I go in to a meeting at 8:15, leave at 8:45, get blood drawn (from my port this time by going to the treatment room), go back to work and wait to see if I need to go back for the transfusion (4 hours). As always there is dangers with blood transfusions, but what's the alternative. Same as with the rituxan. White blood counts were fine.

Then again for a shot on Sat & Mon. Next Thursday (18th), I go in for blood draw (again upstairs), then down to dr., then over to Petscan (11am), back to dr, and possible chemo. Long day ...

I did ask for Christmas week off (no coming in to town), and he seemed fine with it, but if I get chemo on Thurs I'm sure I'll have to get shots Fri, Sat, and again Christmas week (unless he gives me the 2-week shot and only 2 neumegas). Once again living week by week.

I asked him if this was normal (the low counts) and he said that with all the chemo, you don't recover as quickly as before. In other words it is NOT unexpected to have to have a blood transfusion and the slow recovery rate. He DID say (I didn't ask first), that I was doing GREAT which last week when I did ask he said I was doing "good". So that put me in a happier frame of mind going for my shot.

Will let you know what happens tomorrow.

Love to all

December schedule .. almost

Thursday had blood drawn, and saw Dr. G. Originally he had me set for just the Gemzar, but decided to give me the Oxyplatin as well (sigh, cold and fingers not happy with that one). He also scheduled me for Neupogen and the Neumega shots. Neumega only 2 (Sat nurse told me the second dose was a 1/2 dose), the Neupogen every day (except Sun) through Weds.

Thursday (Dec 11), he has me set for just Gemzar (depending on blood count) and probably another round of shots (sigh). Then the following week he wants to have me get a Pet scan. I'm thinking not only so he can see how I'm doing, but also to get me set up for direct beam radiation (sigh). I talked with the receptionist and we're trying for Weds Dec 16 for the pet scan (if the insurance will pay). It seemed to take 3-5 days to get results last time and that will get me into Christmas week. I really doubt (but who knows) that anything will be scheduled for then.

Anyway, I asked him how I was doing, and without hesitation he said I was doing good. The smile and quick response made me feel better and set me up for the chemo to follow. Went upstairs and mentioned the 2 infusions to receptionist. She was not happy since I was only scheduled for the 3 hours and with another infusion the time would increase. They close at 6pm and it would be close if not over time (not that they kick you out ... LOL). Anyway it turned out the Gemzar infusion was only a 30 minute one so I was done by 5:45. While I was getting ready to go, Maggie the social worker called (then came to see me) to let me know that the insurance 'would' pay for the Zevalin, and the Zevalin support net qualified me as well. If the insurance company pulls out the support net would pick up at least the infusions but may not cover the scans. The insurance time frame is Nov 17-May 17 (approval is almost always 6 mo. at a time). That sure took a load off of our minds. So ... now I'm covered for direct beam and radioimmunotherapy (that's what the Zevalin is).

Saturday slept a lot when we got home from town and today (Sunday) a little nauseous (guess I'd do better if I didn't have an empty stomach ... hee hee). Don't feel too bad except for the sort of queasy feeling, trying to get my Sunday routine done, but am planning a short nap to see if that calms my tummy. I've been able to down around 2 qts of fluid a day, harder now that I can't really drink anything cold. But will try to do my best.

Love to all