Starting Chemo April 2009

LENA - so glad about the catheter. Much better than having to go in repeatedly for that procedure.

Your comment about the room spinning made me cringe. I have a HUGE PROBLEM with dizziness - even the SLIGHTEST dizziness makes me violently ill. Runs in the family. My dad is worse than I am. I threw up on my very first date - went to the fireman's carnival, rode the whip - got off, lay down on the concrete, threw up and called my mom to come get me. I was 15.  And that was only one of many many stories I could share (but I will spare you). You don't seem as troubled by it - but for me, that would just be HORRIBLE. Glad it didn't bother you. 

Where is Titan?  I am a little concerned............. 

Happy Thanksgiving Helen!

Lena - glad you got the catheter...I was going to suggest it when you said you had to go back, because we see quite a few people in home care with them, and it makes life much easier than running for more doctor's appointments.  Hope it makes it easier for you.

Late here for me too - off to bed.

Geri

Yeah, better now, all. Post-procedure pain is a little worse than the first one, but I'm still glad I had it done because Percocet helps the pain, and NOTHING helped the discomfort of being "12 months pregnant." Visiting nurse was here this afternoon and we drained ANOTHER 900 mL today, yes, after 5.1 liters yesterday! Anyhoo, to answer questions about the catheter and ostomy bags -- no I don't wear a bag all the time, I only attach one for drainage. When drainage is finished, the bag comes off until the next draining. If I would have had to wear a bag all the time -- UGGGGH!!!! EWWWWW GROSS!!! -- I'd have foregone the catheter and preferred to get "12 months pregnant" again and arranged for standing paracentesis appointments every 2 weeks for the hospital to drain me. Draining is actually fairly simple to do. The hard part is that each time I drain, I'll have to change the whole dressing (I don't have full fine motor control in two hands, remember?). I was able to do my own draining today (though was glad to have the nurse supervise to make sure) but she had to change the dressing -- I didn't dare. I watched and will at least try it probably when she comes back on Thursday but I don't feel confident I'll ever be able to really get it (although this was my second time watching: I watched the first one yesterday when we finished the procedure). I know it's weird that I should be able to set up my own draining but changing the dressing should be so complicated, but it is. It actually requires more dexterity than the draining.  :-P

I really frickin totally hate my body, even though it's smaller now and, clothed, isn't so embarrassing as it was as recently as yesterday morning.

Helen -- what did I miss that everyone here is wishing you a happy Thanksgiving? Is there a special Canadian Thanksgiving and I didn't know about it but everyone else did? Well, OK, then happy Thanksgiving. 

Betsy -- I used to be Bug Lady (in the microbiology labs LOL) but I'd rather be a street bag lady than be bag lady from WEARING a bag all the time. EWWWWW.  I'm sorry but that just grosses the hell out of me, and you know that's a really hard thing to do! I see I'm going to have to come back here tomorrow to see how you're doing and how your appointments went.

Geri -- the catheter was my oncologist's idea; SHE suggested it. I was reluctant when she first mentioned it because I'm afraid of an "open wound" and something sticking out of my body (same reason why I was originally afraid of the BMX drains, only now it was the catheter instead of bulbs). I agreed to try it yup, because of the comparative independence factor, but I'm not yet entirely comfortable with it. That's mostly because of the dressing changing business and making sure not only is the wound clean and dry but the catheter itself is all wrapped up and in plastic so I'll be able to shower and not somehow accidentally pull it out and cause ratness knows what kind of pain and infection). I'll really have to see how this goes. I never REALLY got comfortable with the BMX drains either -- thank goodness I only needed them for a week, since I was totally afraid to shower with them and didn't until they were removed. Now I'm still paranoid about showering with this stupid catheter, remembering also the damn nephrostomy tubes' "DO NOT LET THE AREA GET WET!" instructions. Yeah, it's all clean and dry and wrapped up at the moment, but I am so not happy and afraid of the shower. The nurse at the hospital yesterday told me to wait 24-48 hours after the procedure to shower (paracentesis without catheter, "you can shower tomorrow"), and it's fine by me to wait till tomorrow although I technically could have had a shower tonight.

Blecccch.

I bet Titan's temporarily gone missing because of wedding stuff...right? 

Amy -- wow, what a story is RIGHT, concerning your daughter's wedding....wow, I don't know what to say!

OK, nightey-night all....... 

Hey you guys...(thanks Betsy)...I was here the whole time...this wedding stuff kept me very, very busy and then when the kids were away on their honey moon I swear all I could do was stare into "freaking" space for 7 days..and wonder what the heck just happened..ha ha...

All in all though everything went pretty well...if you want to see pics (they say proof on them). you can follow this link:   www.snapped4u.com/galleries     then click on Williams/Welsh wedding (there are 3 different selections..2 wedding and 1 reception)  The password is wedding...

Judy..glad to hear that you are adjusting to your new home.   You are good to your friends..I'm not sure how good I would be about telling my "story" over and over again.

Lena...I wish for you the best quality of life possible...I agree with you there...and wow..getting rid of that fluid had to make you feel tons better....

Betsy..my duck...I hate to hear of your news..I have tears in my "freaking" eyes (there you go)...I think that you will be fine..I just hate the thought of you having to go through this again..you have been through enough..dang it..but at least your Ducks are doing well..my Bucks seems to be sinking deeper and deeper into the pit...I feel bad for these kids.

 Amy...how about that running!  I'm glad you are doing that.....I've picked up running to and just love it..I'm slow but improving my time little by little...at the last race I beat a friend of mine for the very first time....it was sweet,....

Geri...how's it going lady?  I miss our cyber martinis.

Helen...I'm glad you are enjoying your retirement!  Some days I'm so ready to not worry about working...have months full of Saturdays..fun fun..

Titan - beautiful pix. (And Lena, I will post the link from our photog's site as well - I KNOW facebook is awful for photo sharing).

I notice all the details (having just planned a wedding, too - keeps your eyes on the specifics). I love how the groom's boutienerre  (sp) coordinated with the flowers. And I LOVE her bouquet. She looks gorgeous and her dress is beautiful and suits her perfectly!

Also, are the cake flowers shasta daisies or zinnias? Gorgeous!

Everyone looks happy and the bride/groom look in love. What more can you ask for? Thanks for sharing! 

Hey all...

Well as I thought the rx is a complete hysterectomy including ovaries, fallopian tubes and cervix. I'm shooting for surgery on Nov. 11th but have to wait to hear if the OR is available. If it's not, it will be some day the following week. The dr. is planning on using the Davinci machine (I envision Edward Scissorhands working a computer) scary! The dr was very nice, he is in the same group as my medical onc. He was very honest and explained once again about grading and staging. With grade one he said it's not aggressive (unlike my grade 3 IDC), so that's positive. He said I only have two options as I am PR+, surgery or rads. I said no way to rads so surgery is my only option. I don't need any of those female organs anymore anyway, right. I'm just hoping they weigh at least 10 lbs....automatic weight loss plan, right! LOL 

Titan...welcome back...a good kick in the freakin smart ass is what you needed to get back here. But I'm really glad your back. I missed that twisted sense of humor.  I need to wait to view your pics as I'm exhausted tonight.

Lena...I know what you mean about grossed out....but really changing the bandage after a while will be a piece of cake. It's not that bad when you get the hang of it. I dealt with somewhat of a similar, but much more SMELLY situation ,TG you don't have to deal with that! You are strong, you can do it and once the area heals up, it won't be as scary. Likewise, getting things wet in a while will not be as scary either. My ldh had a make shift ostomy bag for over a year plus a groshong (like a port-a-cath). He was fed Hyper-Al (food in a bag for a year) and he was able to do most things by himself eventually. Frankly, it didn't bother me either once I got use to it. I was happy that he was alive...I didn't care that he had bags and tubes. I bet for sure that Pat Rack feels exactly like I did. When you love someone...that's what matters.

Hi to everyone else...I need to go to bed, it's late and I'm exhausted. Hugs right back to all of you. Thank you for the support....I really, really need it right now.

Betsy 

Betsy, so sorry you are going through this but you do sound upbeat and the prognosis seems to be good.

Here's a little bit of good news. My DIL is pregnant so in April we will have another little one to love. This is #3 grandchild. 

Damn - I just wrote a whole long post and it disappeared!

OK really quick now - Betsy - I used a book/CD to prep for surgery. It is proven to help you heal and recover faster/better.  It is here: Peggy Huddleston book  If that link doesn't work, search for her on Amazon and you will find it.  I would be glad to send mine to you to use if you like. Just PM me your address.   I used it twice/day in the weeks before surgery - morning/night. Only takes 20 min and really helped. Let me know.

Helen - congrats on your new grandbaby-to-be.  Do they live close by? If so, you will be able to be more involved now that you are not working. That is wonderful!

Bought new hiking boots in prep for our trip to Shenandoah Nat'l Park in 2 weeks. Am going to take them for a spin today and see how they feel. I always get nervous on a big purchase like that when you are never really sure how they are going to feel when you use them. But the store had a 'foot guru' who took AN HOUR to fit me, and promised they would be good or I could bring them back. So we shall see.

Love to all!

Amy 

Hi all...it's official it will be 11-11-11, at 10:00 so I will be in the middle of it at 11:00 a.m. I'm feeling pretty positive, hoping for the best but realistic enough to know there can be complications. I've warned my employer I'm not working for 4 weeks minimum. This time through, I don't plan to work. I'm sort of hoping the time off will allow my arm to heal up completely.

Helen...congrats on the new wee one! Babies are soo much fun.

Geri..thank you for thinking of me and Lena. Please thank your DD too!

I'm really trying to lose weight and work on my abs b4 surgery. I'd like to lose 10 more pounds and get that six pack everyone talks about. I'd even be happy with a half case...it would be an improvement. LOL. Actually, I have lost 6 pounds since I stopped tamox and got my dx, it's quite amazing. I'm doing about 80 crunches a day. I need to kick up the cardo too.

Amy-make sure you break in those boots before you go..nothing like sore feet when hiking.

Titan..I know the triple negative has it's problems but in many ways it might be a saving grace. I don't think much of the hormone therapies.

Lena...are you doing ok...awfully quiet lately. Hope all is well.

Judy..how are you doing? 

Hugs to all...

Betsy

Beautiful day to do the Making Strides Walk - DD raised $1,300 this year...woo hoo.

Betsy, you and Lena did that walk with me today, and everyone else on this board was pushing me along when my hip was hurting (damn Arimidex

Oh wow Geri, if I'd been hurting that bad -- and you know I know how much Arimidex hurts -- I'll accept and thank you for having had me in your THOUGHTS, but no way would I have been on that walk! I actually took two naps yesterday I was so tired. I'm glad you survived!!! How are you feeling today? I hope you're getting the rest I'm sure you need! 

Betsy, the reason why colostomy stuff horrifies me so much is because one of my grandmothers had one (for diverticulitis though, not cancer thank goodness), and yes, it was the smell thing. Now, I know what feces smells like -- c'mon now, mine never exactly smelled like roses either, but even so I'd had no idea. Maybe it's the concentration of it in the bag that makes it worse? Well here's what happened: I was early 20-something at the time and had gone out to dinner with my mother, stepfather and Grandma, and as it happened, Grandma and I had to use the ladies' room at the same time; me to urinate, she to change her bag. She actually warned me, but like I said, I knew what "that" smells like and nobody's smells good, so why should hers be worse than mine or anyone else's, right? Problem was I said that to her. So into the bathroom we go. I take the stall next to hers and pee. Next thing I know the smell hits -- and not only was it worse than I expected, but it was so bad I was GAGGING. Until this occasion, the only smell to date which had ever elicited me to GAG was the smell of VOMIT. Anyway, I was so embarrassed about the gagging because of how my poor grandmother must feel and how I'd practically promised her it wouldn't bother me. Somehow we got through it (and I knew I would NOT have been able to handle that in person if I couldn't even deal with the smell while separated visually by the bathroom stall door, and I had problems looking at her for the rest of the evening and tried to force myself to act normal) -- in any event, even the mention of a colostomy anything makes me react with the same kind of utter total horror as, say, Helen would if someone talked about taking a knife and literally skinning that new grandbaby alive. Yes, I am THAT horrified at the thought of colostomy anything anywhere near me -- I feel positively certain that I would definitely kill myself if I have to have a colostomy ever.  :-O

Judy, I bet it was more fun to be entertained by your neighbors than to do all that entertaining when you had your guests! I hope you're resting too, sounds like you could use it!

Yeah Amy, I hate when the posts disappear too. Usually I remember to copy while in progress of writing a post (especially a longer one), but sometimes I don't, so they occasionally get away from me. Dammit!  How's the hiking boots?

Titan, I'm usually an idiot when it comes to posting pictures on Photobucket, but OK if your photographer got them up on that other host.  Maybe Amy ought to hire him the next time she takes one of those gorgeous nature vacations she talks about! LOL

Ascites update...

I don't know if it's the pain pills or the new "packaging" I got from Nurse Linda today, but I feel a lot better today. When it comes to the draining/re-dressing issue, I had a really horrible weekend which I won't even go into except to mention the bare essentials of the temper tantrum in which I threw all the medical supplies all over the bathroom and the pack of adult diapers (which thankfully I don't need anymore and won't if this new "packaging" of the catheter works). Don't ask the specifics on the new "packaging" -- I don't really know, and since (if it'll do what the nurse said it'll do as well as she said it would) it'll only have to be changed WEEKLY, I don't care and it's complicated enough I don't feel like typing that much. So whatever's going on now, hell if I know. I'm just glad I feel better -- even like maybe I can do a little walking. I also made a graph for the amount of ascites drainage, not unlike the one I'd made for the post BMX draining. I'm producing between 500 mL and 1 L of ascites per day. I know, yuck. Next onco appointment is Wednesday. Hey, some of you have onc appointments on Wednesday too, huh?

And now, for something completely different. I never in my life thought that the phrase "too skinny" would EVER be applicable to ME, but guess what, it does NOW. Except for the ascites area of my lower abdomen and also a moderate amount of edema in my legs/feet, I look like I spent the last few weeks in a concentration camp or something. Actually the first I noticed it, about a week and a half ago (while I still had the pre-paracentesis big belly), my first thought was Kwashiorkor (severe malnutrition) and if only I was black, I would look like those poor malnourished Africans they used to have pictures of in National Geographic. Well now that the huge belly is gone, I look like a cross between an anorexic actress and a Holocaust survivor (my face is gaunt too). My appetite has been coming back since the paracentesis, but apparently not enough I guess, huh? Well, I put being "too skinny"  to "good use," you might say. On Saturday early evening, my Pack Rat (who I had not allowed to see me undressed for the past two weeks BTW) called to ask me if I wanted to go out to eat! Timing was bad -- I had actually just eaten a hamburger and bowl full of leftover Chinese food --  but since he suggested the diner in Vermont we both like a lot, and you know I love to just be with him, I said yes anyway, although I'd probably just be having coffee and a slice of pie or something. So he eats an actual meal, and I ask if they have cheesecake (LOL) -- they don't, so I "settle" for a slice of homemade pumpkin pie PLUS a small bowl of chocolate ice cream to have with my coffee!

He says the "cheesecake and sex diet" has to be next (I finally let him see me without clothes yesterday morning). Nope, there hasn't been any sex in the last 2-3 weeks either because I couldn't breathe enough before the paracentesis and then the catheter area hurt too much. (Geez, he actually WANTS to have sex with me?!)  But he's working in CT this week so the cheesecake and sex diet has to wait till at least next week minimum. 

Sooooo....I think now that it's lunch time, I'm going to eat a huge chef salad (yup I bought ham and turkey for chef salad at home), and maybe an egg salad sandwich to go with it. I certainly have the "room" for a pig-out like that! 

Hi everyone ... just checking in for a minute.

Lena, I'm glad your are feeling better. The sex and cheesecake diet sounds like a good one. It is certainly unique

Betsy, I hope you aren't agonizing too much about the upcoming surgery

Judy, I understand that tired feeling

Geri, congrats on the walk!!

Amy & Titan, I hope you are enjoying the after wedding glow ... and less stress now too 

I know mentioning this right after the "smelly" posts here is very, very "off," but I did pig out at lunchtime, including the egg salad sandwich. I even ate a hamburger and a big bowl of applesauce at dinner time too. Nope I really don't feel "up" to the cheesecake and sex diet at the moment, it's just what my Pack Rat had said. I'm almost glad he's working at the office this week because I'm just "not right"; I find I'm still "experimenting" with this new catheter packing/draining business (it's an improvement but I'm still in need of tweaking with it if that makes any sense), and I'm tired (not sick or any worse brain dead than I already was and not losing any hair) but maybe the chemo, gentle though it supposedly is, is beginning to accumulate...? or am I still worn out from the ascites crap, since I still produce the wretched stuff even though I drain it every day instead of building up until I'm "12 months pregnant" and can hardly breathe, walk or eat? Dunno...yeah I most certainly do feel better now than I have in the last week/week and a half but really that doesn't say too much. I have GOT to make a point to tell my onc on Wednesday I need a palliative team NOW. There has GOT to be some tolerable way to handle all this fucking crap and I'm at a total loss when it comes to figuring it out myself -- QOL is still only measuring in the negative numbers. I can't believe I forgot to mention it at our last appointment a couple weeks ago.

{{{{{Helen}}}}} Thank you, you are a sweetie. Problem is I don't know what kind of help to even ask for! I guess that's why I need to talk to palliative specialists -- guess I tell them my problems, and THEY come up with the solutions? Something like that.