Starting chemo January 2009?

BerkeleyKim, Yes, I am at 6 mg of decadron now.  I can't nap or sleep at night after I've had it, even with the full benadryl and my regular sleeping pill, lunesta. That has been the case for both Friday and Saturday nights after chemo.  The benadryl and decadron together really confuse my body; I am wired and drowsy at the same time and stay that way for at least 24 hours.  It is not a good feeling but I have hopes to be rested up for Monday.     

Misty, I was only in hospital one night after my mast w/implants.  My muscles were so sore I couldn't pee for most of the first day.  Urinating was a real struggle, which must have had something to do with the catheter used during surgery.  That was a tough surgery to recover from but after about seven days I started to improve fairly rapidly.  I hope they are medicating you well to keep you comfortable.  My thoughts are with Malcolm too, of course.       

I may head up to a little eastern European market and get some decent Polish sausage tomorrow.  There won't be a run on it like there is back home.  When I was a kid we alwasy had to take our Polish Easter breakfast in baskets to St. Paul's to be blessed.  Everyone had to make sure to eat some blessed eggs, sausage, rorseradish, coffee cake and butter lamb.  Everything had to be blessed.  Then we all stood up and broke bread with a wafer that was passed around the table.  I grew up in a very tight knit Polish neighborhood.  Easter was always a Big Huge deal.  The biggest holiday of the year by far.  I so miss all those warm, close old traditions.  Easter was always a big deal in Buffalo too, because it was often the first time we might see the sun and not have to wear a heavy coat in so many months.

Enjoy the holidays everyone.    

Year of the Hat:  I love Polish sausage!  Where can I get good ones?  Which brand?

Misty:  I am so happy for Malcolm.  I'm sorry that your blood count was low and had to stay over at the hospital, but you had your surgery so soon after your chemo.  I can see that happening.  I'm sure you will recover soon and both you and Malcolm would be coming out all fine together!

Take care everybody!  I think I need to join a April rads group now, but this place still feels like home.

Thanks for the haiku, Lisa.  It's great and I agree 100%.  It sounds like things may be looking up for you!  I am sending all my good energy your way for Tuesday.

Mimi07 - I am sorry but the place I go is this little, kind of dusty shop where I know they make it there.  They really speak little English.  I feel lucky to have found a place like it in Lincoln.  I hope they are open today. 

ddlat: I hope you can put this out of your mind some and have a good weekend.  I'm thinking of you.  (Don't remember who asked above, but my liver enzymes did slowly improve after the chemo stopped).  

Misty: Hoping that by the time you read this your counts are up and Malcolm has a new well  functioning liver and is recuperating as expected.  I've been thinking a lot about both of you.  

Alo, I'm quite jealous.  I was told to expect a good 6 months for the taxotere myopathy to improve.  I'm not thrilled about being in that low percentage who gets it.  What I am amazed about this week is how wierd it is to be now 2 months out and have all the eyelashes and eyebrows disappear.  Just when you think the hair will be coming back!  Also, can't say I ever realized that you can't tell your eyelashes are gone until you look in the mirror, didn't realize how little function they served.  

They stopped it due to toxicity (I went into shock and renal failure) so the primary issue at that time wasn't the liver enzymes.  If it had only been then they would have temporarily stopped then restarted, with everything else going on they just stopped.  Liver enzymes returned quickly to normal 1-2 weeks.  Have you ever had trouble with your gallbladder?  That will make the alk phos rise too.  I know that it is impossible to get that small percentage out of your mind, but what the other's have said is true, chances of mets at this point is low, and chances of it being gall bladder, or especially chemo much higher.  As another woman I talked to going through this too said to me yesterday, this stuff just makes you a little crazy that's all there is to it.  Someone told her that she had situational anxiety and depressions, and she said "duh, you think?"

Hi all

I thankyou for the Haiku , Lisalisa....yup, I can relate.  Today is a sunny day and I enjoyed being outside for a bit.

I must admit I am still o the decadron high---8mgs for me for the day.  woohoo!!!  I cleaned house, raked the yard and taught a tkd class.  woohoo, am I gonna pay tomorrow???  I guess I was already hearing the haiku in my mind this morning.  

I did take atavan to help me sleep thru the night.  I will try it again tonight. 

Has anybody heard from sweeeepaam lately? 

Misty---I am sending positive vibes your way.

 I hope you all have a great Saturday and relaxing and /or at least festive celebration for Easter--if that's what you celebrate!   Happy spring!

Ddlatt-thanks for the link on the buffs--they have some beautiful patterns. Watched the video of the women doing different styles--looked like a magic act. I'll try to head to rei soon.

Lisa-Great haiku. Definitely feeling it on my steroid day.

Yearof the Hat--How are the lower steroids working out? I got a couple hours sleep last night, especially after the 4 am ativan. I wonder if my aunt knows the store you're talking about. My mom's family were immigrants from Germany in the late 1800s, and set up butcher shops and bakeries (not there now, though). Hope you get your special sausages for Easter!

Going to try to make it to a wedding recept. this afternoon foro ne of my husband's co-workers who really stood by us after his stroke last year and it's a beautiful day and they will be beautiful brides, so I'm going to go see if I have anything nice to wear that fits.

DD had friend will color the eggs this afternoon. I better get some choc. bunnies.

ddlatt:  Thanks for the web sight for the buffwear.  I checked it out and it looks like a really good solution for the summer which I have been looking for.  Did you get any indication how long it would take to get them? Glad you are finding you can put aside the worry alittle bit this weekend.

Kim and Yearofthehat:  You are both on taxol #7.  What has been the biggest challenge for you?  It seems from your postings that the premeds have given you more trouble that the actual chemo itself, do you find that to be true?  I will be only gettting 9 taxol altogether because I have had one taxotere which my dr. said is like having 3 taxol.  After not having any treatment for almost 5 weeks now I am just a little worried about starting up again.

Misty: Thinking of Malcolm all day hope all is going well.  Let us know asap.

Well my granddaughter has replaced my beautiful doggie as my wallpaper on my laptop and my cell phone so I am going to try to figure out how to replace him here too.  Shhhh! don't tell him...

Patti

Ladyjane, the picture is beautiful.  And the taxol to taxotere equation your Onc told you about, just explained a lot to me

My brother hasn't talked about changing cravings, but it is an interesting questions.

Lisa-Not pathethic at all. Wish I could have gone today to get DD some easter basket treats but was wiped out after socializing and eating too much at the wedding recept (which was lovely). So had to send DH out for chocolate bunnies, and he came back with just the ham. So sent him out again and what I can say...at least he got something. Congrats on regaining your "regular" self!!!

BevR-I'm impressed you're flying!! I'll be flying in June but I never thought about them asking me to take off a wig--hope it looks more natural than a beanie!! I'm always worried about it blowing off on the school yard, so I walk around holding onto it. I'm also never quite sure if it's slipped around. Oh well.

LadyJane-DARLING baby!!! So far I think the premeds have been harder than the Taxol, but it's hard to tell. I felt so much better after stopping AC, and I have more energy to walk and get other chores done plus work (which I didn't do during AC), and my blood counts are better with no Neupogen so far. After a couple tx of Taxol I realized that coming down off the steroids was very depressing for me (Sunday after Fri. tx). I'm hoping tomorrow will be better. After reducing steroid dosage to 10 last week, Sun was better but tiredness and aches dragged on to Monday. My onc said that I will probably start feeling more tired as txs go on. My hair on head is starting to grow back, but eyelashes/brows still falling out. Also I have some lower back pain, and am just hoping the Taxol is working. Weekly is ok for me. I have tx fri and take Mon off work. By thurs afternoon I'm actually ready to kick back at tx and sleep. There's a link to research on the 12 Taxol vs. other options on this  website under treatments. I hope this works out for you. Oh, and chemo brain definitely kicking in. I had a hard time packing for our little 2-day get away.. Not like me to not be able to multitask. Can't imagine how you got organized to fly off after feeling so bad with pneumonia. You're one strong lady!

Good Morning Jewels.  Out of the blue find myself very emotional today.  It is actually sunny here, the snow is gone.  Feels like Spring is coming and its a pretty holiday weekend, and I'm just so happy to be feeling better and be alive here to see it.