jaminkw
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Posts posted by jaminkw
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Karen makes a good point. Taking some precautions may be the perfect compromise. Getting the records shouldn't be any problem and you can tell your husband that arranging for the oxygen is just to make you feel better.
Good luck and hope you can relax and have fun.
Judy in Key West
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puppy love
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I didn't have a tumor but the pleural thickening in my chest wall was stable after two rounds of carbol/taxol/avastin. The next scan (when? don't remember) showed improved and after six rounds plus two avastin maintenance infusions was gone and I was in remission. I know that first stable was disappointing for me but guess now that the important thing in the long run was no growth. Be encouraged!
Judy in Key West
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Barb, As is often said on this site STABLE IS GOOD. Hope you can relax until you get closer to the next scan. I've managed to do that and don't really start stressing until after the infusion before the scan--for me that's a three-week worry period. Long enough.
Stay well, Judy in Key West
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Randy, Just amazing and we need all the help we can get in fighting this horrible disease. These preventative measures could be a boon for future generations.
Judy in Key West
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Thanks Denise, I'll just let her be then. I stopped trying to find people with the "Search." It takes forever to skip through the endless pages to get to the first letter of a name. Maybe I'm doing it wrong. What I do now is try to find someone on a recent post--it's easier.
Judy in Key West
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Linda,
I still haven't mastered the quote thing but I love your bottom line: Nothing for it but to stick around and see if it gets better.
Judy in Key West
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Ned, Thanks for your reply. I remembered what you said about muscle and joint strains when I started working out with my Total Gym again. I've been taking it slow but too often feel like I'm working through the pain. Still, it feels good to be getting stronger again. I noticed I can now open the door to the RV with one hand instead of needing two
Like you, I thought I'd read a post that reported the pins and needles thing with Avastin. When Dr West said he wasn't aware of the connection, I thought I remembered wrong. The mouth problems are definitely related to what I eat but I hadn't made the connection with the slow healing process that you talked about in an earlier post. I'd already noticed that with minor scrapes and scratches.
I'm committed to seeing the Avastin through to at least the end of the year but the neuropathy thing is worrisome. I've read people who've had it and gotten over it and heard of it being long term and chronic. I hope the person we remember talking about it re Avastin reads our posts and responds.
Judy in Key West
P.S. I have another confession--did no serious reading or writing during my trip. Oh well, I had fun and that's probably exactly as it should have been.
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Sometime just before or after I went on vacation, somebody asked about Jackie. I lost the thread and never heard an answer. Can anybody tell me what's going on that we haven't heard from Jackie?
Judy in Key West
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Marci, I've checked dates and times in your posts and it appears your mom had her scan at 10 am today. How long do you typically wait for results? I'm lucky and get them the same day. The wait is what kicks you. It leaves too much time for the fear to fester.
I just felt so bad picturing you at work alone crying at your computer. I hope you were able to finally take a deep breath and calm yourself a little. I swear as a former mental health counselor that it's cumulative stresses that push people over the edge. Having to worry about your job at the same time you help your mom through this crisis is just too much. Think about who you might call on to help with transport, etc. for mom until you get things stablized at work. Once they see you have options, you might be able to take a leave day without pay now and then for the really important visits with mom's doctors.
Take care dear and try to have a calmer, more peaceful evening knowing at least that you have people here who care. Let us know what we can do to help.
Judy in Key West
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I'm pasting a post I copied from one I just did on cancergrace because I'm too lazy tonight to compose a new one:
"I had six rounds of Carbo/Taxol/Avastin and now seven additional rounds of Avastin maintenance. Once the doctors got my blood pressure under control, the primary complaint I had on the Avastin maintenance was chronic fatigue. With the last two infusions, however, I've noticed increasing chemo brain, pins and needles in my hands, naseau and gas, increased mouth blisters and now episodic lip swelling. This last infusion I had four weeks in between instead of my usual three to accomodate my vacation but the symptoms seem worse not better. I'd be interested to know if anyone else has had similar experience with Avastin as a maintenance chemo."
I can't say that I feel all that awful, it's just the combination of annoying problems is wearing me down. Also, I never know what to call my onc and complain about!
Judy in Key West
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Bruce, I hear you. I have always been a physical overachiever. When I weighed little more than 90lbs I'd wrestle a bureau up the steps to the attic or roll up a room size sheet of linoleum and get it up and out the second story window. I was too stubborn to wait for my husband to come off the road. Those bad habits and a car wreck in my thirties pretty much guaranteed I'd pay the piper someday. The worst was an extended overdo when I was in my forties so I think that age is significant.
I also agree with what you say about our historical experience with family cancer factoring in. My dad died of what I now understand was probably lung cancer with mets to the spine (it was the early seventies and we have little info). I've had low back pain for forever and am periodically certain I'll develop spine mets. Hard to push those thoughts away!
Judy in Key West
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Sarah, I don't have a lot to add to the comments that proceeded me except that before lung cancer, I often commented to my family that I planned on living until I was 104. I picked that number because Rose Kennedy lived to 104 and it seemed like a good number. I'd settle for 94 now. My main reason for living so long was and is twofold, my grandson and because I want to see how it (our society and all that entails) turns out.
Judy in Key West
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Those of you who have been around for awhile have heard me whine on more than one occasion about diminished energy and constant aches and pain. Some of you express similar complaints. My daughter recently offered a perspective I thought was worth throwing out there. I was diagnosed at age 64 and my daughter suggests that these symptoms are really age related. But, she adds, because of the cancer it happened more suddenly and therefore I didn't have the time I might have had to get used to it more gradually.
What do you think? Is this a plausible alternative to it's caused by the cancer or it's a side effect of the treatment?
Judy in Key West
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Sandra, Congratulations better late than never. But I don't know about that "take it out" thing. I'll wait to hear more on that.
I really did laugh out loud at Dave's spineless comment.
Judy in Key West
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Shelli, Don't apologize. That's really good news for the family and Aunt Dorothy!
Judy in Key West
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Randy, I appreciate the value of vegetables and happen to love them. But if they could truly prevent cancer, I wouldn't have it and my husband would. Not that I would wish it on him for a moment but he often refers to my meals as "rabbit food."
I can see you are busy posting lots of good stuff for us but I'm beat and will have to check the rest out in the am.
Judy in Key West
P.S. It's really been bugging me that someone asked awhile ago about Jackie and I lost the thread. Any news?
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omg, I love it!
Judy in Key West
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Kelly, Good luck next week. Your posts have such an upbeat tone--don't lose that. I have a constitution that has always had zero tolerance for any type of anesthesia as well as prescription pain medicine. Because of my tendency to upchuck (sorry, can't think of a more descriptive word) on any of these, my daughter (a Registered Nurse) and I dreaded the possibility of me ever having to do chemo. I won't say I never had naseau but as long as the chemo was administered according to the doctor's orders, it was definitely tolerable and no upchucking.
Bottom line, for most of us treatment is seldom as bad as we expect it to be. Good luck again.
Judy in Key West
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Oh Shelli, it's enough to make you weep. Am so glad you have this place to come with you pain and then to play! I love reading the posts of you and Patti and Denise and Muriel at play. It is true comic relief.
Judy in Key West
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To all of the wonderful people who worried about me, I have to make a confession. I disregarded the recommendation (I prefer that to ignoring an order) of the nurse and the PA at Dr Tseng's office after I remembered Dr Tseng had told me she would be on vacation this visit! Anyway, I went instead to my son's for dinner. We had a family meeting and not going to the ER passed with a three to one vote, my husband, son and I nay and daughter-in-law "I don't the way it looks."
The next morning my daughter who was not there for the vote called and asked what did they say? I asked "what do you mean what did they say?" She responded with something like "don't mess with me." There had been two tentative plans: Go to a walk-in clinic five miles from the hospital that my son had gotten from the internet or present my toe to the chemo nurse. I didn't do either. I covered it up and had the chemo as planned. My grandson kept threatening to tell on me.
Anyway, today I made an appointment with RN Wendy Mitchell on my way through Port St Lucie. She doctored my toe and sides with her dad in thinking it wasn't a spider bite at all but an infected ingrown toenail but nothing to be real concerned about. I may have been influenced by the fact that my husband was bitten (in the same motorcoach) the night before and my first awareness of the toe was a sharp sting while I was in the shower but whatever. If it was a bite, the alleged bite was where the toenail enters the toe so I've been instructed by my RN in what to do with it until I get an appointment with a podiatrist which I will do tomorrow.
I would have checked in and confessed to my sin earlier but last night was my last with my grandson. When we left him at home about midday and headed for the Keys, my previously reliable mobile internet let me online (briefly) so I could read emails and posts on LCSC site but not send or submit anything! So sorry. Guess I need to give someone my phone number, huh!
Judy finally back in Key West
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Lynn, You have done a wonderful job starting to take care of yourself in a manner that is kind and caring of Larry.
I'm thinking of you as I enjoy my morning coffee each day.
Judy on Lake Whipporwill
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Welcome Deb. There was an article posted in the last couple of days about the therapeutic value of writing about feelings towards cancer. You shared yours so generously with us and I firmly believe you will reap the value in helping keep cancer at bay.
Judy doing an infusion at MDACC
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Mary, Welcome. This bunch is the best. I've been on the site for eight or nine months and somewhere along the line slipped into the "new normal" they were always talking about. Keep that fighting attitude and you'll do great.
Let us know when you have a plan in place. People here can help with frayed nerves, side-effects, dealing with difficult family members and all kinds of stuff.
Judy posting from the infusion chair at MDACC
STORY TIME
in JUST FOR FUN
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they put out an apb (is that the right cop term?) for the crazy lady driving a bus with a BIG six pack of beer, a cow and a dog on top, then