Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Sad News for a KA Alumnist

Dear Maxine,.. I am so sorry to hear about your son Daniel. My deepest sympathy to you. I can't even begin to imagine how sorrowful the last few months must have been for you. That he saved three lives is a wonderfully generous and compassionate gift.

I wish so much I hadn't missed out on being at John's in Ottawa, it would've been such a pleasure to meet you both.

It's good to hear the strength in your words, that you have a fighting spirit to beat this cancer. I hope the remaining treatments won't be too tough to bear and that you'll be feeling better soon.

Many hugs.. and hope you'll keep us posted,
mig

Maxine my heart goes out to you....
don't be a stranger....we are here for you.

BTW...I think everyone should drink Gin !!

Sherri

Maxine, sweetie
I'm deeply sorry for what you have had to endure these past months. What strength, my dear. When my best friends daughter passed away at 20, we were all reminded of the importance of organ donation. Her heart saved a teenager from another state, what a blessing for those families of the recipients. I will continue to pray for your strength with your treatment now. Please come here when you can.

Cindy

Max, regarding the gin ... you have to ASK???!!!

I'm so glad you decided to come back to post what's been going on. You've been missed around here, my friend.

Many hugs,

Well Kat... I have to avoid the Gin for a while as everything tastes yukky while on Chemo. They say to avoid everything you like while undergoing treatment as it tastes so bad it could put you off for life (heaven forbid!) I guess that means I should have been eating brocolli and liver for the past two months! (After all, that's no great loss right???)

As an update: My Oncologist was away today, so I saw another Dr. I was warned by the nurse that he didn't know too much about breast cancer (no duh!) and that he had to see 36 patients that day (no rush!). Needless to say, my appt. was for 8am, I had blood work, saw the Doc and was home at 8.45!

I tried talking to him about my concerns regarding the side effects of Taxotere (my new chemo drug) and AS. He fobbed me off immediately by telling me he knew all about AS and it only affects the spine. He said I would be fine and to just take Tylenol for pain. Then he left. I think that there are quite a few of us who could disagree about 'just the spine' (raise your hand!) but it didn't seem worth the argument. When a Dr say's he "knows everything" it's usually a good idea to leave him in la-la-land.

All the other women in my support group have been given much different information. One of the important bits he forgot to mention is that this drug can cause your nail beds to lift, making your finger/toe nails go black, split and fall off. He never mentioned a thing about the joint issues.

No worries, I saw my Family Doc at 11am and she has prescribed some percs to get me through if I need them (I'm hoping not, but it's nice to know they are there, because if it hurts me as bad as it's hurt the other women in my group, I won't be in any kinda shape to go to the Docs for help). On the bright side, I'm given the steriod treatment via IV this time, and a mega-dose at that, so that should help.

I must admit I'm more scared about this set of chemo than my last. Always afraid of what you 'don't know' than what 'you do' I guess.

However, I do consider myself Cancer Free at this point. My cancer went when I had my masectomy as far as I'm concerned. The chemo is just insurance.

I doubt I'll be able to post for a while. The chemo makes me very tired and yes, I feel sick to my stomach most of the time.

Before I forget... my last chemo is scheduled for March 18 (provided I can keep my (blood) counts up and there are no delays) and I can think of no better reason for a party! My son's g/f lives downtown TO (Sam is moving in with her soon) so I have a place to stay! It would be lovely to get together some night. I might even wear my wig!!! (Most often I don't... it's too freaking hot )

Thank you everyone for your words of encouragement and friendship. It means an awful lot to me and I'm very thankful and humbled to have you all in my 'corner'.

I'm off down the 'rabbit hole' once again.... I'll see you all at the Mad Hatter's tea party!

Much love....
Max x

It would be great to meet up with you again when you are in Toronto. Be sure to post when you will be there so we can gather a few KA members together for a coffee or a supper or whatever. Wig or no wig doesn't matter, it's whats on the inside that counts.

Dan

HI Maxine,

Sorry to hear of your sad news and continuing health struggles. I am sending all my positive thoughts your way for a positive outcome. Keep on posting when you have the strength and hope to hear good news from you soon.

Debbie

Maxine,

I replied as well in womens forum. I hated Taxotere as well. I joined a support group and had asked about losing finger nails. No one in that group (about 15 women) had ever heard of it. I asked my doctor and he said it can happen, but was very rare. Yep... I lost mine. Nine toenails, and eight fingernails. Where I now work, I meet cancer patients every day and work with breast cancer patients. Not one that I have met lost any nails. So hopefully you won't lose yours. But I wanted to let you know it wasn't quite as awful as I thought it could be when I did lose mine. They came off gradually, and my fingertips were very tender. Mine never turned black or split. They just stopped growing for a bit, then when they did start growing, the new nail growing basically shoved the old one off. So I kept them clipped until the new nail came through. I wasnt' as careful with my toenails, so caught one on a box I was stepping over... ok, now that one hurt. The thing I hated most about Taxotere was swelling and the neuropathy. But the good news is those both start mending after treatment. I just kept telling myself, its better than the alternative

Wishing you all the best, take it easy fellow survivor-sistah

Hugs!!!
Pam