jaminkw
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Posts posted by jaminkw
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Little bit--not too hard to figure where that came from since I never grew past 4 ft 8 inches. My favorite though was when I was nineteen and working as the secretary to the base finance officer and executive finance officer at Fort Dix. They called me sunshine and even made me a coffee mug with a big sun on it at the base ceramic shop. Wish I still had that mug (I think it got broken in one of our many moves), I'd pick it up and rub it every day to try to recapture that young woman's joy and optomism!
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Like everyone says--treatments are different for different folk. I almost always had some degree of naseau usually two or three days to a week as the treatments progressed. Moving about a lot seemed to increase the naseau so I learned to do things in small doses. I typically got up at 3 or 4 am and after the first few infusions found it nearly impossible to nap. That meant I was usually falling asleep on the couch (still am after infusion 6) at 6 or 7 pm.
It's good not to hover but what helped me the most was evidence that my husband was observing me, usually without a word. That way, if I found myself blurting out "I really don't feel good," he would typically respond with something like "I know honey, I can see it when I look at you." Be there for your husband in an immediate way whenever you can (really seeing him and hearing what's going on with him). It won't alwyas be possible cause you're human too but being heard and understood even from time to time goes a long way.
Probably the best advice in my experience as the cancer patient, when he's cranky just be very quiet and it will pass. Your intentions sound so good, I'm sure you'll do fine.
Judy in Key West
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Funny, funny. Wish I had not deleted the Tale of Two Brains (male vs female). Did you get it emailed?
Judy in Key West
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Kasey: Funny how we never know what will help another person. Your words and tone are so empathic and often just having someone hear you is what you really need. Thanks for keeping my focus on the 3 days aways and for doing the math for me! I like the 3 vs 18. I was devastated as most of us are when we get dx'd, but I really thought it was going to be like so many hardships that have been thrown my way. I thought I would fight it and win. Looks like I have to redefine "win." And the fight could be a really long time since I've told my family for years that I planned to live to be 104--my feelings were if Rose Kennedy could do it so could I! Wonder what my odds are on that now?
Thanks and hope your journey comes later instead of sooner.
Judy in Key West
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I got up at home this morning and read all your posts again--in addition to your new one Patti. They are so comforting. The internet where we stay in Orlando is not the best so I wrote and read quickly while I was there.
One thing it looks like I left out so that people could understand is the drug replacement program at MDACC. It's not portable. I already asked. That and my onc will keep me there as long as we can hack it. I would have to switch primary facilities and have them apply. It was a grueling process but well worth it when you are uninsured. I also had to stay three extra days this time to get replacement on my Neupogena. They say I probably won't have to do that on the Avastin maintenance. I've had a hard time in the past when I've had an extended time up there because you barely get home and it feels like you are leaving again. Bottom line, we'll start doing the three week routine Mar 11 varying it when we can. We should be up and back in three days and only have to see Dr Tseng every six weeks.
Ok guys, I'm ready to go again.
Judy in Key West
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It was good to get up in the morning to all your posts. I did talk to my oncologist about getting Avastin locally and she said the facility at home would have to reapply for a new approval. I have little confidence in our "third world" medicine in Key West. Our oncology center is a small clinic with different doctors coming in and out from Miami. The chance that I could wind up in the hospital there through some complication was the chincher for my PCP going in favor of MDACC.
I think for right now I need to keep trying to wrap my head around staying with MDACC and being open to change if necessary in the future. My husband keeps saying day by day. He's right.
Thanks all, Judy in Key West
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I've been struggling since yesterday after my oncologist told me Avastin maintenance would continue every three weeks until the disease progressed or until the person got tired of it. I feel like I'm sinking fast over the realization that if I want to continue to live, my life will be defined by my cancer and cancer treatments every three weeks--possibly forever. For the first time I wonder how long do I want to live at that cost. It's not just me but my husband. He's the one who hauls me up and down a seven to eight hour trip to Orlando for treatments. Will I ever be able to do that myself and give him back some of his life? Even when I found out I had cancer, and then not cureable but manageable, I didn't expect the final edict to be like this.
Judy in Key West
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Thanks for the feedback. If my brain is working on this pukey Friday following my Tue chemo cocktail, it seems the time on Avastin according to your posts could range from 7 to 18 months before the disease progresses. The bad news, I guess, is that the expectation is that it will ultimately progress. That confirms what I heard my oncologist say.
I am happy to hear all the good words about reduced side effects but am still nervous about the horrible headaches and sore throats I've already had. The doc gave me nystatin for the sore throat and said my PCP has to get my blood pressure under control. The headaches seem to have multiple causes possible including flare-up of an old occipital neuralgia, high blood pressure, chronic long-term allergies and sinusitis, and possibly Avastin.
I guess I'm at the "not cureable but manageable" phase but it's hard to be optomistic about continuing three-week infusions until they fail and yet another treatment regime gets under way!
Fighting to stay "UP," Judy in Key West
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Pat: I can understand your distress. It doesn't sound right that an oncologist would be so inconsistent unless he's trying to tell the patient whatever he wants to hear. The real problem sounds like he has your father fished in and that could be difficult to reverse. Perhaps some of the more seasons people on the site will come in and offer more than emphathy. But I do feel for you and your family.
Judy in Key West
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I just got my last chemo cocktail on Tuesday and tackled the queston of the Avastin Maintenane (finally) with my oncologist. I've only managed to take all this in a little at a time. When I asked how long I would be on it, she looked me right in the eye and said until the disease comes back or the person gets tired of it. I asked if there would be a lengthening of time in between infusions scheduled for every three weeks and she said no--the trials or whatever of Avastin maintenance is to continue on 21-day cycles. I'm already doing that "there's no way I can travel to Orlando every three weeks for chemo for the rest of my life. I'm on a prescription replacement plan and it's only good at MDACC. If I went closer to home, they would have to reapply, and I really don't want to leave MDACC anyway.
I would appreciate feedback from anyone who has been on Avastin maintenance and for how long, and if stopped, for what reasons.
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Left Key West early for this infusion on today. I needed a grandson in Port St Lucie fix. He takes time out from his friends and activities and just hangs with us in the motor coach. He doesn't ask anything of me but is just happy if I'm there on the sofa next to him appreciating what he's writing or drawing on my computer. What a joy.
Internet while we are traveling stinks so I'm taking advantage of a 5 am window of opportunity here. I want to say that we paid out way too much before we hooked into helplines at MDACC and ORH--particularly on the medications but no sense in crying over spilt milk. It would have been worse,if we didn't have advocates in the system and my husband holding me back and telling me we were going to be broke pretty quick if we kept paying out at the rate I wanted to. It's that old childhood "I can do it myself" thing I fight all the time. We were buying Neupogena at the hospital pharmacy at a rate much cheaper than we could get at home but think we missed a replacement or two because we had bought in quantity and it needed to be scheduled at the hospital not purchased at the pharmacy. We are doing it right this time but it may be the last time we need it. Ned, did you do Neulasta after the Avastin only? We haven't gotten the answer to that yet. Last infusion we also had labs scheduled outside the infusion room and didn't understand why. I think that was an adjustment necessary for the replacement as well. They scheduled them that way again this time. You really need to stay alert and ask questions or bring someone who can. Also, getting the Neupogena in house for replacement also means staying in Orlando three extra days but you do what you have to do.
My quality of life stunk this time but I'm ready to go in this morning and tell the doc I can take it one more time. I just want this last chemo cocktail over with. I just am afraid the headaches will continue with the Avastin only next time but I have to wait and see.
Judy in Key West
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Ned and blueeye: Thanks for bringing up the subject of pharmaceutical company drug replacement programs. I've been wanting to post on the subject but thought who am I to advise anyone about cancer and finances when I got caught uninsured. If you are ininsured or find yourself feeling snowed under financially, don't hesitate to talk to someone in finance about these and other programs. And no, the requirements are no way as strict as Medicare. I hate to hear people going into their retirement funds they've worked so hard to try to create as a supplement to Social Security without checking what is available. I almost blew it myself with my stubborn self-reliant "I can pay my way myself or I won't do it (the treatment)" attitude. And don't assume you are middle class so make too much money to qualify. The facility I am in looks at how much you've already paid out of pocket, how much if at all your income has been reduced by the cancer, and whether or not the bills accumulated are already beyond what you or you and your spouse could possibly handle. There is also full help and partial help. My advice to anyone out there struggling financially, swallow your pride and see what help is available. We are sure glad we did.
Judy in Key West
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Ned: Not surprised by the deluge of congrats you got. You are a ray of sunshine on this site. Add mine to the others. But really, I know those "stable" returns just stick in your craw sometimes when you really want more--my experience exactly. But we have to be grateful for what we get--STABLE REALLY IS GREAT!
I'm not happy to hear from you and so many others about the weight gain issue. I worked sooooo hard to lose 15 lbs on weightwatchers online just before my dx. I'm now within four pounds of having gained it all back. Sorry, but I'm not giving up ice cream until the mint chocolate chip in the freezer is gone.
Cheers again on the great scan.
Judy in Key West
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Love it Fred but I'm so chemo-brained that I to stop and think a minute before I got it! Dummy me.
Judy in Key West
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MM: I can't even imagine the emotional pain you are in. You said you lost your sister 3 weeks ago? That's no even enough time to begin grieving before having to face this issue with your husband. I'm throwing in with those who say he needs to make his own decision, and following his intuition knowing all the facts appears to tip the scales for him against the surgery. What is important for you to know is that the situation you are in--between a rock and a hard place--is considered one of the primary stressor situations. Just remember, it's o.k. to feel like you are damned if you do and damned if you don't. Your belief system here--believing that accepting surgery would be his best choice and it's your duty to convice him of what's "best" for him vs believing you will put a wall between you (like you feel you did your sister)if you push for him to have the surgery. You can work your way out of this double bind by changing one of those beliefs or choosing one over the other. Follow your instincts or perhaps keep following your instincts because you sound like you already know what you have to do but it is so hard!
Judy in Key West
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Ned: I do like the idea of the dates in different colors. Do I use tags before and after each date or set of dates? Also, looking again at your profile, I remember how helpful the section on side effects you experienced was. I haven't done that yet but since I've already edited two or three times today, changes will have to wait for another day!
No, I have not seen Dr West's post on PET scans but will go looking for it.
You weren't kidding about the 5th (hopefully you're wrong about my 6th!) infusion being rougher. I feel cheated because the 1st and 2nd were relatively benign. The third was the awful 1 1/2 hr infusion that kicked my butt. The 4th was disrupted for an evening CT WET to check for bleeds. I had to return at 7:30 am for the Avastin which was run in a half hr instead of an hour. After that one headaches were not as intense but I got an awful coughing, sniffing, sneezing cold and battled high blood pressure. This time I wake every morning with a throat that feels like someone ran across it with a sharp knife, awful headache and mild earache. The only time I get relief is about 5 1/2 hrs of 8 hr Tylenol. Blood pressure issue still not resolved with a beta blocker added. One more cocktail and hopefully I get a reprieve with Avastin alone. I am glad I was strong when I started this cause I feel like a real whimp now. You seasoned fighters help so much. When things are really bad, I sometimes remind myself I don't have blisters on my feet so when I do get some relief from pain, I can get up and do something!
Sorry for the big dump. It just all came rushing out.
Judy in Key West
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Peachy, It's on Orange Avenue in downtown Orlando in what appears to be the section where all the hospitals and other medical facilities are. We stay at a KOA near Narcossee and it's about a 30 minute drive north and then west, I think. It operates in conjunction with Orlando Regional Healthcare, and MDACC and ORH are actually physically connected.
If you have any other questions, just ask. I think it's a great facility and wendyr's husband also goes there. They travel from Melbourne.
Judy in Key West
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Jackie: I can tell you are still missing Mike after all these years. I'm so sorry for your bad weather in Canada and am wishing you warm breezes from Key West.
Stay warm and strong, Judy
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What a caring thing to do. Mary is lucky to have you at her side.
Judy in Key West
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I had my first CT/PET done at a diagnostic facility set up by my PCP. He said has referred patients there and it would be the least expensive way to go. Since I am uninsured, I asked my MDACC oncologist if I could have my follow up there in late March. I admit I've been a little nervous about that decision (she said o.k.). The results of my first one (see my profile 10/9/07) was the reason I was so stunned at the IIIB lung cancer dx. Now I've been reading Blaze101's experience and am having third thoughts. Can there really be that much difference?
Judy in Key West
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Snowflake:
Sounds good. I'll try it after I edit yet again. Funny, but I forgot to add the doc visit where they told me "not cureable but manageable." I keep trying not to hear/remember that.
Thanks for the tech help.
Judy in Key West
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Thanks again Betts. I got the font right and went in today and edited my profile. I took out most of the dialogue and it should be tidier and easier to read now.
Ned, I'll be ready any time now for color!
Judy in Key West
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Ned, Yeh, I did it but it seems like I put too much in and left a lot out that would describe my disease better for others. But you know, it was traumatic for me for some reason to put it in print. So, I'm proud I did it. Now I'm going out with a friend to have some fun. When I'm ready, I'll take stuff out and put stuff in and then, yes, how did you guess? I was admiring the colors!
Judy in Key West
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Betts: Yeah, I got it. Now I'll go back and take out the blank lines and my wordiness will be diminished even more!
Judy in Key West
First treatment questions
in NSCLC GROUP
Posted
Snappy: Take in all the information and follow your instincts in responding to your husband. I would hate for anyone to feel like less if they couldn't match the super-strong in handling this disease or the sometimes nasty treatments. They keep us alive but are not always a walk in the park for everyone.
Judy in Key West