jaminkw
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Posts posted by jaminkw
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I'm sometimes not up to going out for a few days just after chemo but I am generally out-and-about. I've had infusions where they just monitored and others that they routinely followed with a shot to increase wbc.
Sorry you got sick. Take this time to take care of you and you'll be more help to your Mom down the line.
Judy in KW
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PCI?
in SCLC GROUP
izzy, my first-born grandson lived near me til he was six. He and I (and his grandfather) have a close bond. I can't tell you how much he has factored into my resolve to face this disease head-on.
Petunia, glad you found izzy. Sounds like you two can do some early dx info sharing.
Judy in KW
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It is definitely Tuesday here. I lost two days but seeing no Sat or Sun Air, I don't seem to have missed anything. When I say I "lost" two days I mean I lost them. Sick as a dog with what I suppose was post chemo misery. Stinging tongue, sore throat (a new one?) and intestinal misery that had me in my recliner or bed for two days and I rarely every take to the bed! Somewhat better today but not great. Stan and I are monitoring my food intake and weight in the hope the fluid is not building again.
Eric, what a great job that would be for you. Would you actually get paid to do what you love best lol! Like I said I've been out of the loop for a couple of days, but would like to know the name of the Hotel in DC. I need to get going trying to get frequent flyer tickets. It's a long shot and whether it's worth arriving early or staying longer to get them depends on the Hotel price. I've been meaning to ask Katie but then got knocked down.
Bud, loved the pic. Stan was just saying that when people ask why he lives in KW, he says so he doesn't have to dress up. He traveled for over 30 yrs in a suit and tie and it would get something like a daughter's wedding to get him in one again. Thanks for sharing the pic.
Prayers, good thoughts or positive energy--whatever you offer up--for my sister today. She's having gall bladder surgery complicated by the fact that she has barely contained chronic funal disease. She's been months waiting to be cleared for the surgery so we are holding our breaths.
Have a good day everyone.
Judy in KW
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Like Donna said, lots of questions. This has to be frightening but a plan in place often helps. What are they saying? If you are not satisfied, have you considered a second opinion? If you want a general but excellent professional opinion, go to cancergrace.org. There are a group of doctors there who will respond usually in 24 hours. Some of us here are dual members with the same onscreen name. Keep in touch and let us know when you have more info.
Judy in KW
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We do have ever increasing SCLC survivors as we do most if not all lc survivors. It is what keeps us going. Keep reading and posting and you will find the hope and support you need. What kind of chemo will your Mom have? There is sure to be someone who has had it. Although everyone is different, it is a place to start for what might occur. I do treatment for NSCLC but for me, some infusion are o.k., some not so much so. It's often not a straight line. Stay in touch and keep up posted on how your best friend is doing.
Judy in KW
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Morning All! So glad you are having a warm pleasant day to go out in Judy. I am sorry though that you missed the lights. I had a waking thru the night again last night but the steroids and frequent peeing should be gone by tonight so I'm looking forward to that all night sleep too.
Let's see--I'm grateful that my Zofran worked this morning and I got to take my walk lol. I'm also grateful I was up to a few minutes in the orchid room with Stan today where we hung another bloomer outside the lr window.
Speaking of ducks, Becky had an adorable pic on FB of sweet new fluffy ones floating in a sink--adorable!
Have a great day everyone.
Judy in KW
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Morning All! It's the last day of the work week for our laboring joes and janes. Hope you all have a great weekend planned, or just hanging out and chillin. That goes out especially to you Randy. Or do you work the weekend, can't remember.
I'm really behind responding to the delightful chatter the last couple of days having missed yesterday and the later posts on Wednesdays. I do have to say there is a widely differing opinion of ducks and roosters lol. I've talked to many people who have had ducks that were mean. I came to live on a dairy farm when I was 4 1/2. They had a duck also oddly named Judy. I was the baby of a family of five girls and heard many stories as I was older how Judy the duck became somewhat of an outdoor Nanny. Apparently I was giving to wandering around the barn area, sometimes going where I shouldn't go. Judy would take hold of whatever she could grab of my clothing and tug me away from where I should not be. I loved those stories even though I don't remember Judy at all.
Lily your rooster story tells me you can make them a friend if you get them when they are a baby. If not look out, they are not naturally friendly folk. Janet, I do believe you will psyche out that rooster and somehow triumph. Sounds like he can take the hard way or the easy way. Hope he takes the easy way and makes a friend of you.
Diane, hope you find that just right color for your house that your neighbors missed. And best wishes for continued mild sunny weather. Are you avoiding your office work too lol?
Judy, tell us--did you get to see any of those Northern lights they say you could see around the great lakes in Michigan? I don't know exactly where you are relative to where they indicated the lights were but do let us know if you did. Are you having chemo today or was that yesterday?
So glad I got thru this without whining about my lack of sleep last night. I'm getting the laundry done in spite of it. Will go for my shot around 2 pm and be done for the day.
Have a great day everyone.
Judy in KW
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PCI?
in SCLC GROUP
Same here, what do the letters stand for? It does sound vaguely familiar. You might want to post it at cancergrace.com that has doctors who respond to your questions. Many of us here are dual members and use the same screen names.
Judy in KW
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Nikole, sorry for your mishap and hope that ankle is better soon. Thanks for your awareness of how disruptive cancer can be. After a year into my cancer, my husband had to get back to work which involves travel. For a couple of years he drug me around with him in a lovely RV but it was exhausting. It also involved figuring out where I was going to be when I needed chemo and finding an setting is up at a (hopefully) nearby cancer facility. Arranging this and coordinating communications between them and my primary cancer treatment provider was not fun.
I'm sharing this so I can tell you I've convinced my husband to travel on occasion and leave me here. I don't have too many people I would call on for help and am an independent cuss anyway. Over time, putting out and dragging in those trashcans, getting the mail and paper, running bank and other errands and even having to feed myself (I can do it but he likes being the chef) gets to be a real drag. I really feel for you though because I don't have a young child to care for with all the running about that involves these days.
Again, thanks for the empathy and you have mine back in double.
Judy in KW
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Hi Kathleen, sorry I didn't make it in yesterday. It was chemo day. You write your dx as
and say it sounds similar to mine. This wording is not at all familiar to me. My lung was filled with fluid before the initial dx but my malignancy was confined to the pleura or chest wall. That has been resolved but now it is in the adominal wall. Determined by cell analysis to be the same cancer, mine seems to have a penchant for walls where it forms a thickening instead of a tumor. I give you this info just to let you know I may not be able to tune into the specifics of your cancer.I was just diagnosed with adenocarcinoma / bronchial alveolar ca of the lungI go to MDA in Orlando because my PCP recommended MDA in Texas or Orlando. Even traveling to Orlando is a chore for us but I've never regreted it. At the time I was trying to determine where to go, my daughter who is an RN also recommended Moffit in Tampa. They wouldn't see me without insurance and they were even more distant than Orlando. Moffit does sound doable for you. We also have a member named Alan who is in PA but swears by Cancer Centers of America (did I get that name right?). I see them advertised in FL also.
Just to get things straight on my traveling around to Centers, that was just out of necessity so I could travel with my husband on his job. It involved MDA sending them orders and getting my chemo where ever I was going to be. It was not fun and don't do it so often these days. The first year I had to travel to OR every 3 wks because I was not on Medicare yet and did not have insurance. They had me on a drug replacement plan for what would have been a very expensive infusion but it was only valid there. I get my infusions here in KW now and occasionally on the road so I don't see why you can't work something like that out yourself. It can be stressful getting two locations to communicate but it's worth it.
Please do visit cancergrace.com and see what you can find out about your particular dx. I have had hope a couple of times but have not been able to find someone like myself with no tumor but malignant thickening in organ linings. I'm not understanding that's what you have but correct me if I am wrong.
Will look forward to your next post and thanks Judy for directing me here.
Judy in KW
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Judy, how wonderful you have the church ladies to call upon. It's just Stan and I down here and I am not good at asking for help. Consequently, I found myself in less than desireable situations more than once. I do know I can call on at least two people and hopefully if I'm in need again I will.
Got to do something in this computer today except charge my ipod for tomorrow and goof off. Hanging clothes and generally straightening my bedroom and doing laundry does not count in the office lol. Maybe if I reconcile one bank statement it will make me feel better. There is always Friday.
Judy in KW
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Morning All! Got a reprieve from walking because of the rain. Maybe later. But right now Stan is making french toast with some big fat raisen bread we got at the bakery yesterday.
Janet, good luck making friends with that rooster. In addition to our regular fowl on the farm, we also had a few banty chickens and roosters. Those little buggers were really mean. Of course when I was on the farm I never admitted to my fears. I can remember being questioned after going out to collect the eggs, "is that all there were?" I was not about to say I only collected the eggs on the empty nests. I wasn't about to reach under a sitting chicken lol.
Janet, I didn't know you've been on Tarceva. Did you get the crazy out of control eyelashes Ned and I got? Now I wish I had them. Must say, you do amaze me how much you can do in a given day. I only wish. So sorry about the appointment cancellation. Staff should be taught about the domino effect. I got a call this last visit in MDA that my onc would not be there. I saw the PA. What a let down giving it's an 8-9 hr drive each way only every 9 wks.
Have a great day everyone.
Judy in KW
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Sorry I have to welcome you again Maria--this time to the new normal for your Dad now that he's in treatment. I said before it sounded like you were going to have the weight of the world on your shoulders. It does sound positive that your Mom was finally able to open up to you and reality.
After what you went through this weekend, I'm hoping you can give in to asking for help. I mean asking directly. Tell a family member or friend you need them to come and be with your parents. Then take that time to walk in the park, go to a movie or do whatever would calm you.
I hesitate to say this is your new normal Maria. My wish is for you to be able to settle into something that takes into account the reality of your parents situation that also leaves time for you. Take care and keep us posted.
Judy in KW
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Afternoon All! I'm late today but had an appointment with the onc here in KW this morning. Didn't want to cave on my exercise yet so fit it in. I'll take off Thursday because my chemo appointment is 9 am.
Judy, I saw your post to Maria following mine. I was impressed with the info and links you were able to offer. I need to get up to snuff on stuff. First I need to get up to snuff in my office. I found the accountant's email just before I left for my appointment this morning. I didn't do the QB copy merge yet because I want to be alert and unhurried so I don't screw it up. It may wait til morning.
Janet, I'm sorry you are worrying about Sean. Hope he stays well for a long time to come. I love the kind of antique shops you describe. I like to look at the high dollar stuff but it's nice to pick up a little inexpensive treasure. And a garage sale in a store--what could be better!
Got to go and at least think about working. Have a good day everyone.
Judy in KW
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Maria, I notice it's been awile since we met. Check in when you can and let us know how your Dad is doing--dx, treatment plan etc. Also, hope your Mom is adjusting to the changes in her life.
Judy in KW
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Good to see you Eric! Those unexpected bills seem to be going round like a virus. We've been infected multiple times with various repairs this winter. Good to hear you are still having a good time out and about. Sounds like a nice day exchanging spouses with family. And aren't those grandboys terrific.
Judy, I think you'll do well with the regime you describe. My first line was Carboplatin/Taxol/Avastin. My onc said 4-6 depending on how I tolerated it. Well, you probably know me by now but the side effects were cumulative. After the 5th, I told her I was glad because I only had it in me to do one more. I don't know about Navy Bean and hair. I just don't remember from Ned. I do know my sister did 6 or more Cisplatin with something else I can't remember and she had only thinning. She had our big thick hair so because the number of infusions were limited, it was really not even noticeable. You could be lucky on that score. I can sympathize with your weight loss concern. Have to admit though, I could have done with that problem. I weighed in at 104 lbs when dx'd and ballooned up more than 20 lbs at one point. I'm down from there some now but if you want some of mine, I'd be glad to contribute if I could!
Now I really am goofing off and have to get to work. Good day all.
Judy in KW
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Morning All! Don't know what the story of the day is in your neck of the woods but here it is weather. Hate to complain about the chill though with all the devastation going on with freaky tornadoes. My heart goes out....
Will walk a bit later today to give the sun time to move up in the sky a little more. Thought I'd better pop in now because my hiatus is over. Time to get back to work. My stomach isn't thrilled about it but I can only delay the inevitable need to start catching up in the office for so long. It will just be worse if I wait much longer.
Have a good day everyone and do stop in and let us know what the weather is in your parts.
Judy in KW
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Just realized I never turned off my computer so I decided to pop back in.
Judy, did I miss something? Did you already find out what chemo you'll be on and that it will be maintenance? It makes a difference with the hair issue as both Janet and I can attest to. When you are on a prescribed number of chemos and you suffer hair loss, you can shave it and it will grow back in when you finish the chemo. With maintenance that's not the case. Whatever it does, you live with it. In my case, it did not all fall out but thinned significantly and the texture turned to something like Janet described--I think she said a Brillo or SOS pad and that's pretty accurate.
Diane, I was pretty devastated when I learned I was expected to lose my hair again. Then when it did what it did, I was devastated for awhile. But it's like anything else with this cancer thing, you do what you have to do and then grin and bear it. I've just been playing with lots of hats. Speak of grinning, I had to laugh at the picture of you vacuuming with the tangled tank and 50 ft oxygen hose. Don't get me wrong, I know how sad it is (been there/had the 50 ft hose) and am so happy you found a new upright. No, I haven't chosen the computer yet--so many variables to consider. This may be the last laptop I buy.
Have a good evening everyone.
Judy in KW
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Morning All! Sorry I missed saying hi how do ya do yesterday Bud and Lily. I got up early and Stan and I went to the flea market. Very disappointing. The prices are so high you may as well be at any store. I saw an Emeril brand name bacon press at Bed Bath & Beyond on the mainland last week for $10. A similar item in a plain brown box was $9 at the fm. The TV said FL strawberry prices would be down because of a bumper crop in Mexico, yesterday $6.00 a qt. I did get the assortment of bifocals I needed at a great price and you can't beat the mini sugared donuts even tho they are 10 for $2 now instead of 10 for $1.
Came home and watched a little TV then actually took a nap. Rare for me but was glad since we went to dinner with neighbors. We went for the pizza last night. Never had it at John's because we usually order dinners. Sausage and pepparoni toppings, it was great but I left with stomach problems after one large piece. I am determined to get myself on a low acid diet to see if I can get on top of what appears to be irritation/inflammation from the fluid I just had removed.
Bud, stay with the slow and easy. Stan had a bad hip issue this Fall and he overdid after some healing and had a bad relapse. He's o.k. now but took it easy again after the second episode because he couldn't do anything anyway.
Lily, sounds like you had a great day yesterday. Don't know what kind of things you get at Trader Joe's. Never been to one.
Have a great day everyone.
Judy in KW
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Janet, we posted about the same time and I got the notice of your post in my email. Maybe the french fries is a chemo thing. I had a lovely Asian steamed appetizer dish in Stuart last week and was still hungry. Guess what I ordered--yeah french fries. Before that, I also sent my husband to the resturant near our RV site in Orlando for some. And I was never a big french fry eater before. Sounds like our sons have similar tastes in computers too lol. BTW, the farm sounds much less attractive in the cold!
Judy in KW
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Diane, am happy to see you whenever you get time to stop in. Sounds like you have a similar job to mine--keeping the paper or computer end of a business going. Depending on what's going on, it has made it hard for me to post also. You are also doing important volunteer work that I'm trying to work myself up to. By the time I get there, I'll be traveling again. I was taking an older woman to the local cancer group. She had had a couple of bouts with lung cancer but was cancer free. The group didn't do much for me and she got very difficult. My daughter encouraged me to back out of that.
Almost switched my mindset to Dell but a good business quality Dell will be almost twice the weight of the MacAir and it appears more expensive than the Dell with the features I want. Those are important factors for me. I'll talk to my son this weekend. He's for the Mac even though he can't afford one right now with his young family. I'm sure he'll help me cinch the choice I want to make anyway lol.
Have a great day everyone.
Judy in KW
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Morning All! It's my favorite KW kind of weather, high 82 and low 76. I kept the windows and doors open with the AC set on 79. Had to close up around 9 when the AC kicked in.
Stan's fishing again which is fine because I'm vegging again. I finally slept in til after 7. It's been awhile and I really needed it. Stan hadn't left yet when I went to walk and offered to walk with me. That was nice. Three days in a row sounds like I'm back on some small exercise track.
Judy, I'm glad you got your treatment plan. Wish I could offer more about what to expect but haven't done either of them. I do recall Cisplatin being a mixed bag--some handling it very well and some not so much so. I think of Ned when I hear Navelbine. He used to call it Navy Bean and had a very easy time of it. It worked for him for quite a long time. Here's hoping they work well and easily for you.
Am off to research relative weights of thin Dells and the Mac Air I was going to buy. My grandson is having second thoughts about his recommendation so think I'd better think about it some more.
Have a great day everyone.
Judy in KW
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I'm not SCLC either but I can speak to my experience with NSCLC. I did respond to first line chemo and was NED for a year, off chemo for six months. But keep in mind, I was stage 3b. I don't know where SCLC "limited stage" falls in my understanding of staging with NSCLC, but if it was early, I believe you can hope for NED after first line chemo. Do try cancergrace.org as Judy recommended. Very helpful there with questions like yours.
Judy in KW
Tuesday's Air
in JUST FOR FUN
Posted
Bud, what a beautiful family! Love the pics, thanks. And thanks for the well-wishes. I hope tomorrow is better too. I plan on going to town with Stan.
Judy, will be thinking of you and hope the chemo goes easy on you. Also hope the new pain meds do their job.
Judy in KW