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Posts posted by jaminkw

  1. I can't believe I'm sitting here at the computer at MDA at midnight. I don't know when I was on last or how many phone calls I have not been able to return.

    When the nurse woke me to give me meds around 10 pm tonight, I remember saying, I'm so happy. She was a bit shocked given the recent state of my health and asked why was that? I had to say I'm just happy I woke up, no vomiting after an usual amount of my liquid diet and feeling pretty darn ok. I have to be very honest folks. It could last a day, a week a month....We (Stan and I, family and the doctors) have had all the "talks. My digestive system has stopped working and I've been living a hellish kind of life for a couple of weeks now. No further treatments but today I elected for a procedure that has allowed me to eat my liquid diet and keep it down for the first time in ages. Believe me, it is exciting! I had a cathater (sp?) put in that will collect the fluids that have been dumping in my belly. Periodically, I will manually empty it . I have no qualms about it--if this can give me even a little more time with a much improved quality of life, I'm all for it.

    Up until now, I couldn't come online. I was not only physically debilitated but emotionally devastated. Through many tears I told Dr T that I accepted this was it but I just could not bear the thought of ending like this. She is so sweet and I could feel her pain for me.

    I swear I don't know what else to say. I'm sitting here feeling so normal. Please, let it last for at least another day, week, etc. I love you all and have missed you so much. I'm on the hospital computer and don't know how long I'll be in the hospital. I don't even have my computer with me in the coach but I'll touch base with you when I can.

    As for the Summit, until today I couldn't even contemplate it. Tomorrow may confirm I can't make it but who knows. I surely don't because tonight life feels surreal.

    To all my dear friends, goodnight and "click."

    Judy in KW

  2. Afternoon All! Today is typical for chemo day. Feeling pretty good with a bag of steroids and a morning pill with an evening to follow. Surprisingly my evening one helped alleviate some serious discomfort that followed a very light lunch that didn't agree with me. Don't know what to expect after today since this is my first Gemzar. Have one more day of the steriod pills though.

    Judy, I know what you mean with the hawk story. I love watching the little birds fight off the big. Sounds like it went a bit of a way to alleviate your internet withdrawal. I remember how that used to be. Been fighting my way through this new cancer chapter and don't seem to have the energy or push or what to log on much of the time.

    Eric, that weather sounds crazy. Sounds like you are having some serious life change considerations. For now, I hope your eye is on May. I've gotten the dates wrongs I suppose--thought is was 5 & 6 and it's 4 & 5? Not a problem but Stan will have to make an adjustment on the RV sites he booked. He won't be staying in the hotel. I'll explain later. I'll be booking in a day early so maybe we can connect by cell phones and you can meet him when he drops me off. That is, if you are not out gallavanting.

    Shirley, good to see you online. Thanks for the compliment. Goodness knows I try but sometime it gets really hard. But I'm a bouncer-backer lol.

    Have a good evening everyone.

    Judy in KW

  3. Dani, as Diane said, glad you found us, sorry you needed to.

    You are in the early scariest phase right now. Take deep breaths and keep moving forward. I'm a 4 1/2 year survivor of adenocarcinoma 3b and will admit it's a rollercoaster sometimes. But for the most part, once you settle into a treatment plan it get's better.

    Do let us know if you get a second opinion and what more you learn about your cancer/treatment plan suggestions. I don't understand that thing about waiting til they think it need to be done quickly? Are they talking about some need for recovery time after what you just went through with the lung collapse? That would make some sense. Keep up posted.

    Judy in KW

  4. Thanks guys. I appreciate the heads up on the headache Bud or I'll probably think high blood presure. As far as hair loss, I'd stopped losing hair with Taxtere and haven't had an infusion since March 8. Last Thursday it started and I've lost more hair now than I did in the whole time on it. Go figure!

    I'm guess 1 1/2 to 2 hrs with premeds. Better than all-day Taxotere at the hospital if if I do have to go in for labs the day before.

    Anyone have to get a shot after the infusion? I forgot to ask.

    Judy in KW

  5. Evening All! Just coming in to say Janet, that is just the kind of Air you need to breathe out here. I will keep that family in my heart and mind during this difficult time.

    And no, we won't call me Judy in Key West in DC lol.

    I made it to lunch yesterday and it was fun. After lunch while the ladies went to the pool, I called Stan who took me home retching in a plastic bag. I was afflicted with the upchucks all day into the night and early morning. Oh, the last couple of months have been dreadful. Let's hope this Gemzar kicks butt fast.

    Have a good evening eveyone.

    Judy in KW

  6. Morning All! Just a quick drop in. I'm supposed to go to lunch with some friends today.

    Not a good start to the day. Awake at 3-something and couldn't get back to sleep. Have had a bad stomach all morning--burning in my throat and esouphagus too. Hope I make lunch.

    Crazy thing this morning. Haven't had a chemo in awhile and haven't been losing hair for weeks. I've been shampooing very gently but got complacent this morning and scrubed my scalp normally. Lost a significant amount of hair! It's not dry yet but hopefully what I lost was that frizzy wirey stuff.

    Have a good day everyone.

    Judy in KW

  7. Morning All! Beautiful if breezy day in paradise. Hope it repeats itself tomorrow for my outing with the ladies.

    Oh, Bud, what a mess that tire was. Good thing you kept control of the vehicle. You guys could have really gotten hurt!

    I need to stay off the scale for awhile. I've always monitored it pretty much daily but now a pound gained takes on a new meaning. I can feel the tightening in my abdomen. The fluid builds in the lower part and pushes the bowels and organs up. Sorry, not a pretty picture. I can feel when it starts happening but seeing the numbers climb on the scale is depressing.

    Stan's off to town on errands so I've been catching up on the net. Got to do something again now so have a nice day.

    Judy in KW

  8. Judy keep posting and getting all the info the group has to offer here. I do remember using the majic mouthwash with earlier chemo. Fortunately the baking soda/salt with Sensodyne toothpaste worked pretty well with Taxotere. It was very important, though, that I eliminated acid food like tomatoes, lemon and lime and spices.

    Judy in KW

  9. Can anyone provide personal info about Gemzar. How long is the infusion, what kind of side-effects did you experience and how long were you on it?

    Judy in KW

  10. Some anxiety the past couple of days waiting to hear if the Cancer Center is going to give me appointments next Monday and Tuesday. I have a month or more planned around that schedule. It only took about four phone calls but it finally happened around 5:30 today. Yeah!!!

    Janet, I know what you mean about picking where to put your energy. That's why Stan wants me to find someone to do the business office work. But Ann, what you said about training, I hate it and dread it too. And allergies up your way are awful. It's not we don't get them here but nothing like when we are in Orlando.

    Got an invite to lunch and hanging at a yacht club pool Thursday so I have something good to look forward to. Of course, camouflaging my already extending belly won't be easy.

    Have a good evening.

    Judy in KW

  11. Morning All! A little cooler yesterday and again today than I thought it would be early yesterday. Not quite summer yet for us. Very pleasant on the porch this morning.

    Judy, I'm sorry you are having such a rough time with the chemo. Try to take Eric's advice to me "put on your big girl panties." If you can tough it out, I think it will pay off in big dividends. As I said before, I thought I'd never make it through infusion 5 & 6 on my triplet but I did and stayed on Avastin maintenance after that. In all, I got a year and a half with no progression--and I'm advanced stage. The people I've known with early stage have had terrific outcomes with follow-up chemo. Don't be sad.

    Bud, I hope those lakes level out for you soon. No work and no fishing is a bummer. And gee, I hope Rose isn't having too hard a time with those hills this morning.

    Janet, you amaze me with your energy. Out all day then to the pub in the evening. Glad to hear we now have a date to meet in Wash and in NYC. Gotta have hope! Do me a favor, will you, next time you are at the farm, hug a duck for me, and maybe a goat too.

    Eric, glad to hear you so enjoying spring/summer. I had to laugh at your impromtu outing with the grands. Bet you were more tired after that than a whole day socializing with your peers lol. Oh, and I've got those big girl panties on.

    Lily, glad to see you pop in. Busy days are good days. And thanks for the well wishes.

    Have a great day everyone.

    Judy in KW

  12. Welcome. Sorry you have to be here but it's a good place to meet others who have walked in your shoes. I can't help with alternative treatments because I haven't gone there yet. I will tell you I had a good run on Alimta--a full year before progression and then on to another good run on Taxotere. I'm about to start Gemzar. In balance, I've managed to extend my life with advanced stage LC 4 yrs, 5 mos. Good luck with whatever course you choose and do keep us posted.

    Judy in KW

  13. Wow, Laurie, what a wonderful thing to say. Thank you.

    I'm online now to email the chemo nurse at the Cancer Center here. Want to see if I can switch my treatments there instead of the hospital here. Lots of pros and cons but I'm going for what I expect to be the most stress-free.

    Judy in KW

  14. Morning All! It's summer in Key West with the AC coming on early in the morning. We're not enjoying the open doors and windows much now.

    I had to post my bad news in update yesterday and it took me until today to get back here. I did read and keep up on what you've all been up to. To start on a lighter note, when Dr T came in the office to see me Wednesday, I felt the need to lighten a difficult session. I asked her on a scale of 1 to 10 (how many times have we heard that lol), how worried was she. Her reply: Judy, you are so far out of the box, I don't know what to expect. On the way to Port St Lucie, I told Stan I didn't want to raise false hopes or be in complete denial but I just don't feel like I'm ready to die. His immediate response, "then don't." My smart alecky daughter said if I could hold off til Christmas, she's been in the computer for a trip to NYC so we could see the Christmas decorations. When we got home, I told Stan maybe I'll write my obit. He asked if while I was at it, would I do his. Then it would be done. I told him he always pushes the paperwork off on me! I've always said you cannot be in our family if you don't have a sense of humor.

    I'll be looking forward to hearing from Air posters and will try to avoid what a friend has called my "disconnect" with my online social life.

    Have a good day everyone.

    Judy in KW

  15. Thank you friends. I whined so much Dr T said I could take 3 wks off. I'm shortening that and hopefully starting Gemzar early next week. I hope I'm ready for the fight--infusion every week for three weeks then off one. When I heard others doing this, I was always grateful I had always been on a one every three week schedule. I do want to get going now before this fluid gets me in a bad place again. That's my incentive, the hope that it will halt the fluid build-up. So far, with the exception of Tarceva, I've gotten a year or close to from each chemo. I'll keep you all posted.

    Judy in KW

  16. This is the update no one wants to write. They took another 6 1/2 lbs of fluid out of my abdomen on Wednesday. Two abdominal effusions four weeks apart constitute progression. And progression after third line chemo is the dreaded one. The official word is that there is no treatment recommendation when you reach fourth line. I remember her saying the recommendation is pallative care and/or....I went deaf after that. Of course, I knew all of this but did not allow it into my consciousness til I had to.

    Although I tried to stop her, my onc who I love dearly, felt it necessary to say I should get my affairs in order within the next 3 to 6 mos and then live every day after that like a gift. She said she just feels so badly if she doesn't prepare people. Of course, I elected to go on to a fourth line. It will be Gemzar with the hope it will stop the continued fluid build-up. The current expectation is that it will continue to build and they have, in fact, made an appointment for another perio when I go back for my scan in April based on that expectation. Of course, contrary as I am, I told her "yes and maybe I'll call and say I don't need it."

    Sorry folks. You've had good news here the past few days and I hate to burst that bubble but it is what it is. I'm still trying to wrap my head around it.

    Judy In KW

  17. Hall pass til end of the week. Back to MDA tomorrow for another drain. I've been feeling so badly and on the computer so little, I'm not even taking it with me. See you all when I get back.

    Judy in KW

  18. Whoaa, I had to come in to check the Shuttle from Ft Lauderdale for my sister and thought I'd pop in before I take my place in my recliner again. Judy, this is a good example for our newbies and guests as to how our info sharing works. Hope they get on top of the ringing pronto!

    Good to see you Diane, Muriel and Bruce. And Bud and Mike, I saw your posts. Thanks for the well-wishes and giving me a smile turning out the lights.

    I dozed off and on most of yesterday and a bit today. Stan will go to our investment meeting for us tonight. I have only one day, tomorrow, to get my stuff together for the trip. It's just 3-4 days up and back so I don't need much. Don't care how much or little fluid they take off. It will be a relief.

    Have a good evening everyone.

    Judy in KW

  19. Got my appointment for the belly drain and clinical with Dr T for next Wed. No scan as I originally understood. We'll take the coach without the car since it it one day. Wendy may run up from PSL for the onc visit with me. She hasn't been for awhile. I like to hear her questions for Dr T and her to hear mine.

    Judy, everything I hear about nausea is prevention. You don't wait for it to set in but tryu to head it off.

    I have to get to work on my Airline tickets and hotel reservations for Washington tomorrow. Given my state of health lately, it's going to take a real leap of faith to do it.

    Done in the computer for today so if you drop in, I'll talk to you tomorrow.

    Judy in KW

  20. Morning All! In Wednesday's Air I said I was going to town and try to create a positive experience. I did. I went to Starbuck's in the Marriot Lobby and someone I jokingly refer to as my new best friend was still on the counter. When I answered "how are you" with "I'm terrible," she came running around the counter to give me a big hug. I also got a free latte for what I'm going thru. She remarked that I never say anything like I'm not good and she thought I was really pissed. Yeah, she hit the nail on the head. I woman I barely know but such a joy.

    Janet, I love your kind of day. I used to have a family restaurant in Kutztown, PA that was like Cheers without the booze. I do miss being able to go and hang out with people who knew my name lol.

    Lily, you said

    I do get what my mom would can heart dropsy. My but drops and I don't have the heart to get up.
    That's one I never heard before and I love it!

    Bud, I'm laughing at you cooking because that what my man does when he gets bored. The parm crappie sounds very interesting and good job on the wheat bread. That must have been a feat. Stan has a venison roast in the crock box. There are HOURS in the prep including a scratch marinade. He took a receipe from Joy of Cooking and combined it at the end wih the Barefoot Contessa's Company Pot Roast. When I got up this morning, the kitchen looked like a torando went off in it.

    I'm afraid things are not getting better for me and they want me back at MDA for another perioenthesis next week. I could have had it done here but I didn't see Dr T last visit and really need to talk to her.

    I will only be in and out sporatically as I feel up to it. I have to split my time between office work that needs to be done.

    Judy, I expect you may be feeling those side-effects more today. Do try what a nurse told me to do. Beginning with the first evening after your chemo, take the compazine at bedtime. It helps alot. Also, if you want that little something stomach soothing, try toast. Works wonders for me. And most of all, rest and pamper yourself.

    Have a good day everyone.

    Judy in KW

  21. Morning All! Am about to get off on my first trip out since last Friday. Hope I haven't already spoiled it. There was some business waiting for me in our office so I decided to do it while Stan walked and got ready to go. I got it done but also got myself very cranky.

    I've been eating very little to keep my weight down so we can better gauge if fluid is rebuilding. I think it is, judging by my weight against difficulty closing my jeans--weight not bad, jeans very tight lol. It's really not funny but if I don't laugh I'll cry. That's the bad news, the good news is my hair stopped falling out awhile ago and my eyelashes are growing back. Sounds to me like I'm going to be done with Taxotere soon. Wish I didn't have to wait so long til the next scan but I just had one and it was stable. They told me some time ago that my progression is difficult to measure. That's what got me in trouble last year.

    Sorry for my mood but I'll work on it. O.k., I'm going out and looking for an event to pick up my spirits. That could even be the latte I'm craving.

    Judy in KW

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