Dear Gayle and Lou,

Thanks for your comments. I am enjoying life. Que sera sera....What will be , will be!

Good luck to you both.
Chris.

So how are we all doing? Living in the moment? I'll tell you, those moments are just speeding along way too fast for me.

Gayle, what news on Lou, anything?

Chris, break out the vodka & tonic. My poison is red wine (like you, for medicinal purposes only, as it's supposed to be good for the blood).

Thanks Birdmom,
I am feeling fine, just the usual drowsiness/fall asleep in the chair, but otherwise fine. The telling time is the next 7 days before my next appointment with my Haemaology Consultant, and the latest blood counts. But I am optimistic.
Still having trouble with my right ear, following the mastoid operation in early July in Dubai. Totally deaf in right ear, and the ENT consultant tells me the CT scan shows there is some water somewhere, and when I see him in 2 months time, he may consider putting a gromet in to drain it. Doesn't sound too much fun, but this deafness is horrible.
XXX Christopher.

Chris, my husband had his first mastoidectomy in Australia when he was about five, and a second here in the U.S. in 1989. He has had several drain plugs put in over the years. Right now, we don't know if his current one is still there or not because he gets tremendous wax buildup & the Dr couldn't see. We'll find out in October when he goes to the ear Dr.

I guess I'm trying to say--if you do need to get one, it's a good thing.

Dear Birdmom,

Info much appreciated. Has this caused, or does this still cause deafness in the affected ear?
Chris

He is hard of hearing, but not deaf. Wears expensive hearing aids when he goes anywhere, but at home, he just tunes me out, ha!

Actually, what makes his hearing worse is this buildup of ear wax, which he does not shed properly.

Hi Chris & Birdmom,

Lou's doing better each week following his Procrit injections. Next doctor's appt is Tuesday...can't wait to see how much he's improved. Doctor will have results of extensive iron bloodwork and will decide if we increase dose of Procrit or add a supplement. or both.

Speaking of hearing...about 10 years ago he awoke and started to shower when he lost his hearing totally in his right ear. We had several specialists tell su it was totally gone...over a period of 15 minutes - wow. It must have been a virus that killed the little hairs in the ear...because he was on a blood thinner at the time and they ruled out a stroke.

Following a bout with vertigo...he settled in with a hearing aid. He's on his third one...digital and quite small. He wears it all the time...except for when he's sleeping in bed. The hearing aid is to help his good ear hear what's going on the right side of his body. His biggest trouble is figuring out where sounds come from...but he's been coping pretty well. Of course, that's the least of our worries right now.

I'm putting on a big golf tournament on Monday...so when that's behind me...I will focus on the "good news" we anticipate getting from the hematologist on Tuesday.

So is MDS really a cancer diagnosis? I just remembered that we both have AFLAC cancer policies. Can there really be something good to come out of this craziness?

Keep fighting...I look forward to chatting with you both again soon.

Gayle

I asked my Dr the cancer question, because my research online indicated that experts disagreed on whether it was or wasn't. He said yes, it is--cancer of the blood, & that most authorities are now willing to call it that. Every time I go see the Dr, I'm going to a building with big letters on top saying Cancer Care Center.

I'm seeing a new hema this afternoon (same place; my original Dr moved back east), so I'll let you all know what my results are tomorrow.

I agree with Birdmom. From day 1. I was told it was a cancer, but I forget whether it is of the blood or of the bone marrow. Will ask my haemo on Thursday, when I have my next appointment.

Hey, Birdmom, have you missed my photo? Taken a long time to post one, but my eldest daughter came for the week-end ( she lives in Scotland) and organised my photos, and posting 1 to DS,

My bird, ...alongside me...is of course Judith.

xx Chris.

I've been wishing you would post a photo, Chris. Great one! And it's so nice that you included Judith.

My new hema says not blood cancer. He's only willing to call it preleukemia. So whatever.........

My news wasn't what I'd hoped for. Hemoglobin 9.4, so I got my first shot yesterday (Ara...something). Will have another in 2 weeks, just before my trip.

Hi Birdmom and Chris and anyone else out there....

Good news from our doctor...Lou's Hemaglobin is up to 10.5 but the doctor wants more so...he upped the dose to 60,000 units for the next four weeks. Lou's feeling stronger each week.. great news here.

Regarding the "cancer" diagnosis...our doctor says yes, absolutely and he'll be filling out the forms next week for us to submit a claim to AFLAC. Yippee...bonus money to spend on fun things.

Thanks for all your "well wishes" they seem to be working. :)

Gayle

Dear Birdmom,

If you go to my photos, you will see a photo of Judith's Fiat Panda car, which she managed to put on the roof last week.

I was offered ARA-C, which I have turned down as it only gives a 15% chance of achieving anything. However the programme spelt out to me, was an injection twice a day for 14 days, then 2 weeks respite then start again, and go on for 9 months. If it is the same thing, I do not understand how you get away with 1 shot per 14 days. Lucky you. It is here also known as Cytarabine.

Tomorrow I am at the Haematology dept for my normal 14 day blood test and consultation. I am feeling fine.

By the way Gayle, yes MDS is also known as pre-leukaemia, (which I now apparently have) but here it is described as cancer. Anyway, good luck with the claim!!!

Best of wishes to all.
Chris.

It's Aranesp that I'm getting, Chris, for the anemia. It's similar to Procrit, but for whatever reason, my clinic prefers the Aranesp.

I checked your photos--wow! Scary for Judith, not to mention yourself. Both of you are great-looking people, so you must have beautiful kids too.

Gayle, that's great news about your policy.

AFLAC!!!

Hello, Birdmom & Gayle,

Yes my Haemo confirmed to me this morning that MDS is a form of cancer, of the blood and bone marrow ( she said it is the same thing as Bone Marrow makes your blood).

Blood test this morning. PLatelets gone up from, 14 to 44, Hemoglibin, up a bit, white blood cvels still have lots of Leukaemia cells swimming around. Still I feel fine. Chemo tablets reduced to 1 per day. Had a good conversation on life expectancy, which cheered me up, tho no promises that I will live for ever ! I wonder why????

No Birdmon we have no children together, got round to meeting Judith when I was over 50, and by then the toys did not produce the right contents!!!

Bad news is that I still have some residual infection in my right ear. Still as deaf as a doorpost in my right ear (100%) and not too good in my left so Judith gets very frustrated.!!!

Still life goes on, thanks for another day.

Christopher.

Chris, I think that's very good news for you. As to the deafness, my heart is with Judith. Humphrey drives me crazy sometimes when I must repeat myself several times, but strangely enough, he always hears me call him for dinner, even with headphones on!

We too have no children together, but we each had two, stairstep ages. At times all of them lived with us. We've been married for 34 years (and they said it wouldn't last, lol).