No Go Friday

Had the catheter put in Thursday (hate it). Slept in my recliner (not very well). Friday morning arrived at hospital lab at 7:30, had blood drawn, went to hospital oncology and got GCS-F shots, then had to head to work until 12:30 when oncology nurse called with the bad news. Seems my count went 'down' instead of up. Started at .7, then 3, now 1. Not good news. Have to go in Saturday (repeat Sunday). If my count doesn't go high enough, there is one more shot they can try (super GCS-F). It may be that the chemo (it's only been a week since I had it) that has my bone marrow taking longer to make the cells ... don't know. White cells keep going up just not the ones we need to collect. Hope the results get better, don't know what will happen otherwise. Kinda discouraged.

Will get dressing changed and catheter flushed tomorrow as well. Once again we have to wing it.

Send lots of positive thoughts of the results being what we want.

Love to all

Waiting for "collection"

Had 5 vials of blood drawn. Arm has nice 'bruise lines', should be fun with blood draw tomorrow! They gave me a "pretty" (not really) bracelet (square red with a number) on my wrist until all the 'collection' has been done. Dr. G. ordered all kinds of tests (think there was a sickle cell test too) plus my blood is getting typed. Found the hospital lab okay, and when I was asking for directions to oncology I saw the sign pointing the way. That's all I can report, now it's a waiting game.

Got my two shots and double checked downstairs about tomorrow ... Hospital lab @ 7:30, then dr. at 10:40. It's a long time to hang around, but maybe all the results will be in and if tomorrow is a 'collection' day I'm there already.

Feel pretty good ... only take (so far) 2 regular strength Tylenol (a day). Maybe tonight I might take one more before bed. I woke up at 2am a little achy but fell back asleep with no problem.

Love to all

Ouch

Well, day 2 of double dose of GCS-F. Two shots in the belly (not too bad), then off to work. Made it through the night fine. Only took 1 extra strength Tylenol and it lasted me all day and night. This morning, though, I took 2 regular strength. Feel kinda achy in my chest & back. Figured it would get worse throughout the day with the second double dose.

Anyway, so far so good. Wednesday will be even earlier since I've got to go in for bloodwork.

Love to all

Here we go!

Interesting side effects on the chemo ... only one I had was the "cold" issue. If I touch a cold item from 'fridge or freezer I get pinpricks on figures. To reverse just run hands under warm water and it stops ... obviously you don't want to drink anything cold as well (room temp okay). Another patient said it usually only lasts a week.

The 'pain' is I have to go in each day to get a shot of GCS-F (instead of neulasta). Just as achy, but they want to use that one since it isn't a 'time release'. The only other side effect I've noticed is a 'hint' of nausea (think it's due more to being unsure of what the 'plan' was and the cost), was 'up and down' mental/emotional last couple of days. Not depressed/sad/unhappy, just somber.

Wasn't sure if the insurance company would pick up the harvest & transplant. Just heard this morning that the they will pick up both the harvest & transplant. That meant I got a double dose of the GCS-F (gonna be an achy breaky day) Whee, at least the insurance/cost is one thing off my mind. So far this is all I know ... tomorrow (Tues), I'll go to the cancer center at 8am for another shot (single), then Weds over to the hospital lab so they can check the count, followed by another shot, repeat each day until white count high enough to harvest. Watch it will be on Halloween! Gotta be sure they don't get any 'gremlins' in the harvest. LOL I think they plan on doing 2 harvests, just to be sure they have enough. To harvest I go to the oncology dept at the hospital, they insert a catheter in my neck (otherwise vein may collapse) and machine draws blood/filters and returns all but the harvested stem cells. Just a local and I could go back to work afterwards (takes around 4 hours). The stem cells get processed (at our hospital) and frozen until needed. They used to have to send them to Spokane up to 8 months ago. Once they've harvested enough I will go through ??? number of chemo cycles (don't know yet), then will get the transplant (probably month or two). Now that a lot of the uncertainty is over (at least we have an approved plan), I think I'll be able to handle it without a problem (God willing).

Love to all

And so it begins again

Just got home after completing cycle 1 of the second round of chemo. Went pretty well ... took 3.5 hours (3hrs for oxaliplatin and 30 minutes for gemcitabine) referred to as GemOx. I'll be getting rituxan again next Thursday after labs and dr. visit. Only hassle is that I have to get a shot G-CSF (it stimulates the bone marrow to produce more white blood cells) EVERY DAY ! I'll head to the medical center before work during week. Saturday will be a trip in and Sunday Jim will have to give it to me. It seems to be another version of Neulasta (just not as long lasting) so the actual shot isn't bad, just got a little achy after neulasta.

Friday (tomorrow), we've got an appointment with the oncology nurse (they cancelled today's), so I don't really have much information yet. I'll try to post more tomorrow ... maybe by then I'll know how often, if I have both ritux & GemOx on the same day or if I'll have to go in on 2 days.

Anyway ... feeling okay right now ... will probably start getting tired in a bit, but hey, I'm at home anyway ...

At least I think I finally got my 'head straight' for this next 'battle'.

Love to all

Pulmonary Function Test

Results (from technician) are that I have lungs ... no just kidding.

On a couple of the tests I scored over 100%, and the one they were really interested in (after the machine kicked her out a couple of times and she replaced the valve and we tried a fourth time), I scored a 78. Over 80/84 is normal for the particular test result they are using . She said chemo can affect the results (takes a couple of months to reverse), or couple of other things, but as far as she can see I'm fine. Nice technician ... explained everything as we went along.

So ... got okay for heart and lungs, just this damn cancer residue ...Physically feel pretty good, emotional/mental still working on it ...

Dr. Chang will review and send results to Dr. G & Dr. Newcombe.

Love to all

Bad News

Wednesday Jim and I went in for my dr. appoint. Dr G gave me (and showed me) the results, that there was the large B-cell lymphoma in the lymph node that was biopsied. That means we go to step two which is high dose chemotherapy (probably GemOx [gemcitabine, oxaliplatin], and/or rituxan) and an autologous stem cell rescue (involves hospital stay). He said he’s still going for the cure. Now we’re waiting to hear from the insurance company before proceeding.

Jim went back to work and I went upstairs for another dose of rituxan plus a flu shot. My bloodpressure was the highest it has ever been at the doctor’s office, and only went down a bit when I got upstairs (I wonder why??!!) Afterwards I stopped at the library to get a ‘attitude boost’ and pass on the information. I spent the rest of the evening being depressed. Felt better later on, and today even better. Still not really chipper, but trying to get into the mind set for the upcoming treatments.

I’ll let you all know more as I find out. Probably not until next week.

Keep those prayers and good thoughts coming … I’ll need them.

Love to all

Piece of cake

Got to the Short Stay unit of the hospital by 7:30am on Wednesday. Was taken (along with Jim) to the intermediate area (prep/recovery) got into my fashionable hospital gown, had an iv started (using my port), and went over all the paperwork & record update. Once they were ready for me, we went into the CT procedure room (CT was like a mini-version ... just the ring area) and met with the radiologist and tech people. They explained what would be happening and that I would be under 'conscious sedation' and not really feel anything. Jim had to leave while the procedure was being done (CT guided biopsy). Wow were they right about not feeling anything!! I got on the 'table', and felt the skin on my back being rubbed (antiseptic) and the next thing I knew was them saying 'we're done'. Back into recovery for an hour or so while my blood pressure was being monitored, then over to Dr. Grosset and upstairs for treatment.

Dr. G suggested a pneumonia shot (which I got), and have a full dose of rituxan. Won't really know anything until next week on the biopsy results (hope for no cancer).

Called CDA group health to extend the referral to Dr. G (it's scheduled to expire Oct. 22) so that's one thing that's done.

Today ... Thursday, just a little sore on back since I'm moving around more and my arm a little sore from shot. Both are to be expected.

Will let you know more as soon as I find out, but 'planning' on having a good weekend. Weather might not be warm and sunny but after all, it's October!

Love to all

Biopsy appointment set

Heard from the dr.'s office on the answering machine when I got home. Sure wish she would have called my cell ... oh well. The biopsy is set for Weds at 8am. at hospital (outpatient I'm sure). From what dr. said and what I've read online a radiologist will preform using CAT scan or ultrasound. I'll have to call her Monday, since I thought I had a dr. appointment along with treatment (ritux and??). I'm supposed to have someone drive me so Jim volunteered. I thought dr. said it was like marrow test guess it's because I'll need something to keep me from moving during the procedure. Perhaps I'm supposed to do the biopsy, then go to dr., then upstairs for ritux (since I'm pretty sure the biopsy won't be analyzed that soon). When I had my access port put in, I went to get the first CHOP right after recovery.

Friday I was upbeat and my old self, but as the evening progressed and again today, I'm back in the "blue funk". I'll get over it .... just need to keep thinking positive thoughts right? Sometimes easier said than done, but I'll try.

Probably won't be adding any new posts until after Wednesday's adventure (???).

Love to all

Keep your fingers crossed

Jim & I went in to see the Oncology nurse Thursday and ended up talking with Dr. G. He said he presented my case to the tumor board and decided that I should have a biopsy on a lymph node (needle through back ... could go back to work after procedure. Just like the bone marrow biopsy). The result will show if it is actually cancer, or perhaps a disease, such as sarcoidosis, that affect the lymph nodes. At any rate, I'll be going in for another infusion of rituxan Weds, with a possiblity of chemo depending upon biopsy results. Doing some online research I even found some notations of 'false positive' results on pet-scans. At least this gives me hope that it may not be the cancer.

I haven't heard when my appointment for the biopsy is, but should find out sometime today (Friday). Will let you all know as soon as I find out anything more.

Love to all

Set Back

Waited 2 hours before saw Dr. G. on Wednesday. He went over the reports, circling and underlining then said it showed high results (not good). Next he looked at the actual scan (I watched from the chair across the exam room) and it showed glowing spots which indicate active cancer. I only saw 2 toward the center and 2 very bright ones at sides (he said not all indicate cancer… in which case I believe he said the bright ones were my kidneys), don't think there were more. But … the other were lymph nodes. He was very solemn until the end when I got him to smile at least once.

He went on to say that we have completed (or almost) step 1, and now since there is still cancer, we need to go to step 2 which is more chemo (heavier dose and possibly different drugs). He also mentioned an autologous transplant (stem cell transplant). We started with an 80% to 20% ration of treatment/results and as the treatment gets harsher it drops down considerably (my age etc). I had my Ritux infusion (drove myself to and from) afterwards felt fine (fell asleep during 10pm program).

Today, Thursday, I came to work as usual. Dr. G. will present my case to the Tumor Board for discussion, then Jim will meet me at the Medical Center for a consultation with an Oncology Nurse to explain things to us so we can get up to speed in terminology with next Dr. visit (Oct 8).

That’s all I know for now. If there is anything to share after meeting with Nurse I’ll post. Otherwise we won’t know anything until next Weds.

Love to all