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Posts posted by jaminkw

  1. Headaches and earache again, much fatigue. This 5th chemo was a disappointment in terms of recovery. Haven't really felt great since day two so I'm really digging for funny.

    Somtime shortly after my dx, I was talking on the phone with an old friend from High School in NJ. She and I share a similar sense of humor and were making as much light as we could over my situation. She came through with the best line this time--she said "you're going to be just fine and if anybody asks about that IIIB, just tell them it's your bra size." Good, huh?

  2. Didn't know where to put this so it's here.

    I've only been on the site a short time but I soon felt it can't be all about me. I've been trying lately to "catch" someone reaching out and adding my voice to the positive energy the long-timers pour in the direction of someone in need.

    I watched an old 20/20 on happiness yesterday and was reminded of the genetic component of optomism. I've been running a little against my tendency lately, bemoaning a three-day or week bout of nausea vs a one or two. My daughter who is an oncology nurse often calls me to task reminding me of people who upchuck constantly after chemo or can't eat because of blisters in their mouth (I have only mild mouth discomfort). I decided to try adding to the just for fun board to recapture my natural spirit of optomism. I know I am just scared and am hoping reaching out to others and using humor to get through the rough spots in life as I always have will help bring me back to my center.

    Judy in Key West

  3. I've been trying to help my grandson through the realization that Nonie has cancer, a scary thing for a nine-year-old. The bald thing was tough for him so I led him little by little from letting him pick up the front of my scarf and feel the stubble to walking in on me in my bedroom with NO HAIR.

    Recently my husband started teasing me about the fuzz that's already growing. Trying to bring Dominick into it, I pointed out how funny the one longer than the others hair growing towards the front looked. By the time I saw him again, the one had become three. When I showed him, he had this suggestion: Nonie, why don't you let the three hairs grow and shave the rest and you'll look like Tommy (?do I have the character's name right?) on the Rugrats!

    Love that kid.

  4. Paperback: I'm sorry you have to go through this with your mom. It's true you need to focus on the positive of those things NOT occuring with her. I know what you mean about needing to hear from survivors. I get scared too when I hear about the NEDs and then the cancer pops back up again for those unlucky people. I'm a IIIB and even at a four, there is always hope as the docs chip away at this awful disease. They told me the same thing, once a IIIB always a IIIB and my latest scan showed "improved" so I've chosen to think of it as a box they have to put you in to point them in the right treatment direction.

  5. Carrie: I think many of us who have cancer would prefer having it ourselves rather than witnessing a loved one go through what you describe. My heart goes out to you. You have a talent, however, for putting your feelings down in the written word. Keep doing it. I believe it will give you some little comfort.

    Judy in Key West

  6. Thanks to all who responded. I'm sure it helped me drag myself off the couch and make myself get ready and go out (ladies, in spite of the fact that I couldn't get eyelashes on to save my life!) with my hubby for my birthday dinner. I took an anti-naseau pill and hour early and dinner was awesome.

    Thanks for being there.

    Judy in Key West

  7. About the profile....When I first came on the site it was just too soon for me to rehash the steps to my dx. Then when I decided I was ready, I didn't follow Ned's advice about Control N and got a good way into it and lost the whole thing. I promise I will try to do it again.

    In short in the meantime, according to Dr West at onctalk, I have a cancerous chest disease that is lumped in with NSCLC. He feels that in a couple of years they will be differentiated. No there is not a great deal about the white-out of the lung which is really called a pleural effusion. It singals what is considered advanced (IIIB) NSCLC and is usually thrown by a dense mass or tumor. They can't find one. Dr West said that they do sometimes find pleural effusions without finding a dense mass but, again, I find that's not so common either. I certainly take no pleasure in being unique in the case of cancer. It makes it really hard to benefit from other's experience.

  8. I hate calling my doctor's office unless I really have to so I didn't call back and question (my questions these days are always delayed reactions) why they were moving my Feb CT/PET to the end of March. I learned the good news when I went for this last infusion on Jan 29. It is because my previously "stable" scans turned to "improved" with the CT WET done on Jan 8. I have always counted on my husband to hear everything at meetings with the doc but this time he spaced too! I heard "improved" and "your lungs look great" and something about the pleural thickening. I don't have a clue but my husband thinks she said something like it cleaned itself up nicely. Whatever, I'm happy with one more chemo cocktail on Feb 19, an Avastin three weeks later and the CT/PET that will probably tell us more about the intervals and length of the Avastin maintenance? I'm really still on the fence about this chemo--I know I probably need it to control the cancer but my husband and I are both scared about how much of it the body can take before it starts having a negative effect. I know a lot of you have been doing chemo for a long time relative to my short three months but it's still scary to me.

  9. I just had my fifth Taxol/Carbo/Avastin cocktail. It wasn't a straight line of side-effects because it was administered differently all but 2 times! In any case, I was disappointed this time because I thought it would be like the second--some manageable naseau the fourth day and a little into the fifth. Instead I've had constipation and cramping (only encountered once before) and naseau beginning the third day, fourth day and into the fifth. I had asked a family member on chemo some years ago if the effects were worse with each infusion and she said no. I agree so far with Ned, the fifth is a little worse but at least I don't have the headaches I had the last two infusions--a cold, sinusitis or 1/2hr vs 1 hr infusion of Avastin???

  10. My sister has been visiting all week from Arizona so I'm touching base while she still sleeps. I slept until 5 am (instead of 4) this morning, yea! It doesn't take much to get me excited these days and my labs really got me up. I get them every two weeks after chemo and that puts me one week before the next infusion. First time 2.3 and a call from the doc to get ahold of some neupogen right away. 2nd time, 4.3. Third time 5.4 and then 8.something a week later at time of infusion! This time, 8.1 two weeks after the infusion and with a really bad cold. Can't wait to see if they're still up when I go to MDACC next week. I am still taking three shots of the neupogen after each infusion but think it's awesome that it just keeps going up or staying up. What do you think?

  11. Donna, I found it really important when I quit smoking years ago to identify the specific situations that made me want to smoke long after the 30-day period of the physical addiction. One that surprised me for me was fatigue. Although as smokers we all say we smoke to calm ourselves down, since nicotine is actually a stimulant, it makes sense that the "calming" actually comes from stopping whatever you are doing, walking away from it physically or emotionally, striking the match and the time it takes to smoke the cigarette. I've always been a bit of a workaholic and the stimulant factor gave me that little burst of energy I wanted to finish a task when I was already tired. Solution, stop and take a rest when I am tired. Duh!

  12. I've been hearing about this tarceva on this site and have been planning on googling it. There's been no mention of it for me but I'm still early in the program. If so many people are taking it, it must be worthwhile but there sounds like a lot of unpleasant side effects.

  13. It worked! I went to bed around 9pm with my normal pre-cancer Tylenol PM which contains benadryl and helps my nighttime allergies. I woke up around 1 am and took my Atavan and went right back to sleep until 4:45. This was a marked improvement over 4, 3 and even 2 am to remain awake for the remainder of the day.

    I was reading in bed at night for awhile there. I'll try that again but will stay with the surer thing until I get over this cold.

    Thanks everyone.


  14. Maryanne: Doing something nice for someone when you really don't enjoy doing it is the best! Unfortunately, I had to do something nice for my massage therapist this morning and cancel my appointment. Late yesterday I started with a real coughing, sniffling, sneezing cold and didn't think it would be fair to subject her to it. She just got over one and made my appointment late in the week to be sure she wouldn't contaminate me. What a bummer! I was so looking forward.

  15. Thanks for all the feedback. Since I have Tylenol PM on hand, I'll probably try that first. Never thought of starting with that and then the Atavan if I wake up earlier than I want. It's really important right now for me to get sleep since I've come down with a cold--coughing, sniffling, sneezing. I need to get well before chem on Jan 29.

    Thanks again guys. If one thing doesn't work, I'll move on to another.


  16. There was some discussion a few days ago about doing massage therapy during chemo treatment. I googled massage and cancer and came up with this (oops forgot to note the web address):

    Q: Is massage safe for cancer patients?

    A: People used to worry that massage could spread cancer cells. This is not true for most cancers. It is wise, though, to avoid massaging body areas known to have cancer or inflammation. And be sure to talk with your doctor before starting massage therapy.

    Many cancer patients attain pain relief and emotional comfort from massage administered by a skilled therapist. Some cancer centers have incorporated massage rooms into their facilities. Massage before chemotherapy treatments helps lower anxiety. It has also been shown to heighten immune function and improve blood flow.

    --Bernice Crook, RN, OCN

    I will ask my onc next appointment but I wouldn't give up the one I have scheduled for tomorrow for all the tea in China. It's been a grueling week putting numbers together for MDACC and ORH people who are trying to get me some financial help. I used to do it monthly but have only had one other massage since dx. My massage therapist is one of those people who just exude goodness and the physical and emotional benefit of a session with her is worth the risk. I can't imagine it hurting me.


  17. My physical side effects are so benign compared to those of other members signatures I've read. But I really do want to complain about waking at four am. I'm just into my third month of chemo every three weeks and before my last infusion had just started to relish waking up at five and occasionally even six am. Now I'm back to four am. I try staying up later--last night to an amazing ten pm. No luck, up at four. I take an Atavan before bed so I go right to sleep. Anybody have this problem? Any ideas?

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