jaminkw
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Posts posted by jaminkw
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Denise, Sorry to hear Tom has an unexpected complication in an otherwise positive scenario. You'll whip him into shape, I'm sure. What an amazing idea to accept donations. We should look at that more closely on this site--people start and stop prescription meds all the time and would probably be happy to have them go to good use. I think about that with all the bp meds I'm taking. I'm trying not to order too much and get stuck with it but I could still wind up holding some. Good idea.
Judy in Key West
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there was some progression in both my right lung tumor and in some lymph nodes. He stressed that it was minor and that everything else is OK.
Now Patti, read the quote and focus on one word: MINOR. I also like your doctor's perspective on how you've been feeling and agree wholehardedly. How many of us are experiencing pain, discomfort etc and don't have a clue if it's being caused by the treatment.
Honey I am so so sorry the news wasn't better but take heart and focus on the positive. You have lots of folk here who have done or are doing Tarceva successfully and are generously offering all they know to help you deal with any problems that arise with it. Use them, suck them dry for information. But honestly, I'm terrified of it too and don't know why. Maybe we're just afraid the rash will make us look really bad.
I agree with others who say share with Nick and don't worry about crying. How can that young man know it's o.k. to let the tears flow sometimes when things just don't go as positively as we'd like.
O.k., I'm going to put myself out there and you can take it or leave it. I think it is wonderfully generous of you to keep bad news from your husband on the road to keep him safe. Does he know you do this? Has he ever asked, how long have you known this? Has he asked not to tell him until he comes home? You may be shortchanging him in thinking he can't handle it and keep himself safe. If so, you could be really short-changing yourself in not having his virtual shoulder to cry on. You know how much fun it is driving that Keg bus, well that's how much relief you might be able to experience crying on the phone with him and having him say, Honey, I'm so sorry.
Judy in Key West
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Gabby, Aren't the people on this site the greatest. Let me add my voice in welcoming you to our family. Visit us whenever you want or need to.
Judy in Key West
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MarGre, Amen!
Judy in Key West
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Tarek, I am so sorry for your loss but so glad you were there. And it sounds as though the last moments with your father were gentle and loving and maybe even a little closing of the distance you felt between you earlier.
Judy in Key West
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Janette, sad news for sure. Blessings to you and your family that you may find peace over the difficult days ahead.
Judy in Key West
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There's no way to take this news but badly, at least at first. I'm with ginnyde, thankfully there is a plan in place. As long as there is a treatment plan, there is hope. Hell, there can be hope without a treatment plan.
Will be rooting for you Lilly.
Judy in Key West
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Muriel, Welcome back. I hope you guys fare as well as we did in Key West. Nothing more than a few green leaves on the ground in our back yard. The media hype is horrible and gives us a bad name. We Floridians look like nut cakes to live here!
Judy in Key West
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Oh Shelli, I'm so glad a made a check-in and caught your post before turning in for the night. FUNNY!
Judy in Key West
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Sandra, Please remember that any pain is exacerbated by stress and stress is ANYTHING GOOD OR BAD that requires the organism to change and adapt. When we think of stress, we always think it's something bad and usually something emotional. But physical stress is just as taxing on our being. Our cancer creates emotional and physical stress so we have to work double-time to try to minimize it. Look at all the stress-reducing activities you can find and try til you find one that works for you.
I struggled with pain that the doctors weren't able to definitively diagnose since I was 20. The advice of two people still stick in my mind at age 64. A male acquaintence who'd had back surgery said as long as you can still walk, don't let them cut your back. Several other people through the years who'd had back surgery agreed.
The second person is my dear sister-cousin who nearly died from phlebitis (sp?) when she had six young children. I asked her how she handled the pain. She said you learn to sit down and put your feet up when you are tired. Not easy but I still often do it. When I don't is when I suffer the most come nightfall. I do believe with the right doctor or physiotherapist they can successfully remedy a nerve issue without surgery. But Sandra dear, I don't think it's going to happen without your FULL cooperation.
Have done accupuncture sometimes successfully sometimes not so but it is really expensive here.
Hang in there girl.
Judy in Key West
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I'm one of the lucky ones Randy who has a guy at the wheel during the drive as I gathered you were able to do for Deborah. I am also fortunate that I get my results the same day as the test. But the stress doesn't change. I had a major melt-down after this last one. In fact, I had a pretty significant melt-down after "the drive" to my last infusion. I know we're tough but it wears you down. I feel for you Sandra and you Patti.
Judy in Key West
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Sandra, I'm so glad it's not cancer causing your leg pain but hope you get it resolved real soon. You know there's conflicting evidence regarding massage and I understand some some cancer centers are even offering it now. Check it out. I'm in remission and kept up my massage somewhat regularly throughout my treatment. Don't think I could live without it!
Judy in Key West
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"KILLER STORM FAY LASHES FLORIDA" That's the headline I saw on the internet when I just logged on. It is unconscionable. Storm's gone, done, nothing, no reason to think it's going to "lash" or be a "killer" anywhere else in Florida. This is the reason some day some people will be killed because of the media hype that causes people to eventually just tune out.
We're good. We're great. I turned my computers off even though there was less thunder and lightening than a normal storm and got some thank-you notes done I've been meaning to mail out. Of course, the last time I was out to the mailbox there had been no delivery. So much for "whether rain or hail, sleet or snow...."
Have a great evening everyone.
Judy in Key West
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An added note on buying the new one. I did about a year or more after agonizing over just the right size, length (important when you're 4'6" or 7") and inside pocket configuration. Recently when visiting my daughter I complimented her on her purse. She said, "Thanks, it was yours, you gave it to me when you bought your last new one."
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Thanks for everyone's concern and I don't turn down prayers for anything--whether it's weather or cancer. I think we're o.k. Husband just went to town to get the fixins for vegetable soup so I know where he'll be all day. In the kitchen. Of course, for you guys out there, he only shuttered the French doors out to the patio where we usually go sit for a bit here and there. He said he didn't do the others because he didn't want us to feel all closed in. Go figure.
Judy in Key West
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Bruce, Welcome back. Hubby says it's going to go east because of some front. I listened this morning and even if we do get a hit, they don't expect it to be more than a Cat 1. Will stay in touch.
Judy in Key West
P.S. Will be watching Updates for your scan results.
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Frequently, can't stand the mess I make sometimes when I'm busy shopping and just shove money and receipts in the vicinity of where they are supposed to go.
Judy in Key West
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Sorry I'm late checking in guys. Just got back from having dinner at a neighbors'. We're in a holding pattern here. When these things come up so fast and cover such a large part of Florida, we don't usually evacuate unless it's a high cat 2 or a 3. My husband is the one who usually gets antsy to get out. He travelled for his job for years and missed most of the ones I weathered over the more than 20 years I've been here. He says they are hyping (again) and that they have put up hurricane warnings and watches but it's still a tropical storm according to the wind speeds. He's usually up at 4 am and will be on top of it.
I'll keep in touch--I have at least 45 min of battery on my laptop in case he doesn't let me plug into the generator lol. And my neighbors said they have enough leftovers from dinner for a hurricane party. I know these things can be no joke but living here you have to start counting on your instincts. Really, from where we are sitting, we don't expect it to be too bad.
Judy in Key West
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Ned, I've had leg and back pain that I've "doctored" for since I was 20. The primary pain was in my legs but the back was believed to be the culprit--or not. They said I had a congenital defect of my lower spine that could cause any range of symptoms to none at all! I learned to live with the pain when someone who'd had back surgery said whatever you do, don't let them cut you as long as you can still walk. I learned to complain less too.
I was in a car wreck in the late 70's and the pain is increasingly in the low spine and into left hip now. My massage therapist swears if you can learn to sleep on your side with a fluffy pillow between your knees, you'll wake up with less pain. The idea is to use the pillow to create a straight line with the body.
My father died of spinal mets that went undiagnosed until he was inoperable. I don't know but I think once I get on Medicare, my spinal pain is going to get bad enough for a full MRI. The fear of this stuff is just awful.
By the way Ned, I think your backpack idea is ingenious. I may try it myself since I have been limited in the distance I can walk without back pain for many years now.
Judy in Key West
P.S. Did the chiropractors, back brace, orthopedic shoes etc etc without effect.
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Denise, Congratulate Tom on his newly grown fuzz. It really is all about the hair. You grieve because it's gone and now that it's coming back, it's a little messy. Family memebers keep telling me to go to a stylist and have her shape it up. Not enough up there for me to risk that yet so I'll stay with the mousse and gel.
Judy in Key West
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Katie, As you can already see by the outpouring of welcoming posts, this is a great site. Like Ned, I word both this and cancergrace.org but this is more my family and that is more my encylopedia of cancer. Not that you won't get lots of good info here but for my this is my emotional crutch.
Welcome aboard. Keep us posted so people can offer support or helpful information on how to deal with things as you go.
Judy in Key West
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Lynn, Wise words about my husband's projecting. Hadn't thought about that and it makes sense. Almost a year into my journey and he still vascillates between hovering and occasionally seeming to pretend nothing is wrong. Don't ever hesitate to offer an opinion because I was a therapist. We are often great at seeing what's going on with others but clueless about what's going on with ourselves. Difference is I recognize it and have tools to deal with it--one of which is to talk and LISTEN to other people's perspectives like yours on this issue. Thanks. Hope your journey in this new phase of your life is not more than you think you can bear. You sound like a savy and strong woman. I'll watch for your updates.
And you know what? I felt that big old cyber hug all the way down the end of the Keys!
Judy in Key West
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Patti, I had to scroll for what felt like FOREVER to get to the end of your list of well wishers. I do believe firmly in all that positive energy being generated your way. And let me ask you, do you think a woman who was really sick could do all that digging in the garden and run around and be mom to boot?
Glad I got back to see your post. We will all be here waiting and rooting for you on Monday and Tuesday.
Judy in Key West
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I'm happy to report there was no change in my scan Tuesday--stable for me, I assume means i'm still in remission, I'm still NED. I asked Dr T if I went off Avastin what would they do, would they put me on something else. She said no, they would just watch me because there is nothing to measure. I asked if the cancer showed up again where would they expect it to be, in the pleural space? She said it could be anywhere.
I should be estatic but the possibility now that I could be doing damage to my heart staying on Avastin has sent me in a tailspin. Dr Tseng recommended I see my PCP or a cardiologist. My PCP recommended another SCAN to look at the arteries in my heart. I just had one yesterdy and have had about six scans and 2 pets in just under a year with another CT and PET sheduled in three months. Between that and terrifying money issues that have surfaced again, I just mostly cry. Top that off with my husband saying that cancer is all I ever talk about. It's not true but it hurts to hear it.
I'll be back when I figure it all out.
Judy in Key West
A Pair of Shoes
in JUST FOR FUN
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Denise, that's beautiful, truly moving.
Judy in Key West