missyk
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Posts posted by missyk
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Amanda...
I'm sorry you had to find this place but I can't think of a better place to find if your family is facing this monster.
Celebrate even the smallest shrinkage!! LOL Mom's onc equated the cancer to a moving train...first you have to get it stopped...THEN you can work on backing it up, so a 50% shrinkage is WONDERFUL!!!
The one brain met is very easily treated with Cyberknife and it's becoming, from what I can tell, the more common first step. It leaves the healthy brain tissue alone and can be done repeatedly for other mets that might pop up along the way.
As far as the expectations of living a while...only one person knows, if you believe that way. But people are living longer and longer with this disease and living WELL. Look at the dates of diagnosis on some of the signatures and you'll realize that there are quite a few long-term survivors of all kinds of stages hanging around to give us all a little encouragement when we need it...there's not a thing that says your dad won't be one of them, too!!
Never give up hope!
We're here for you when you need.
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Karen...
I'm horrified to read that hospice isn't doing much for Lori and her Mom and that gail p-m didn't have a good experience, either...
Hospice, for Mom, has been a God-send. Her nurse stops in a couple times a week and is never more than a phone call away at ANY time for ANYTHING. She is the go-between with Mom's doctor for her and gets any supplies delivered that she might need. (Hospital bed, walker, electric wheelchair, etc etc)
The social worked stops by once a week to sit and talk with her for as long as she needs and helps her to advocate for herself with us and to help her get things in order that she feels she needs to do (getting a video camera for her so she can make a tape). The social worker is also available to US for whatever help we might need in dealing with end-of-life issues in our extended families.
We're just getting to the stage where a home health aide will be needed and I can't imagine anything but wonderful results with that, also.
Much love and many prayers for peace and comfort (and ALWAYS that prayer for a miracle!!!)
xoxo
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Welcome Lisa and to answer your last question....
Most definately YES! LOL It has been, from day one, OUR disease, not just Mom's. We travel the road together, riding out the highs and lows along the way as one force against the disease...and we're lucky to have that.
There are days, sure, that I wish for the time when it wasn't a group effort to go from one day to the next...but I am so used to this "normal" now that I find myself wondering what will happen when the "normal" changes again.
Just wait until you find yourself saying "our bloodcounts were a little low today" or "we were in the hosptial for such-n-such"...and even MORE fun when you start talking in acronyms!
The good thing is...we all understand!Sorry you had to find this site...I wish no one ever had to again...but I'm glad you did! Come in anytime and drop a line...we'll be here!
xoxo
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Val..
Thank you for rambling!! Mom has talked of making a video because a very close friend of mine who lost her Mom when she was 19 said the ONE thing she would about give anything for is to hear her mom's voice one more time and that stuck with Mom.
I'm so glad you could watch it and enjoy those memories...
And, you know, I have a feeling Carolyn DOES know her just fine!
And she'll get to know her ever better as she grows and hears stories about your amazing mother!Much love and many prayers, Val...
xoxo
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They sprung Mom from the hospital...into a hospital bed at home.
She went and saw Dr. B (her med.onc.) yesterday and told him she NEVER wanted to be back in the hospital (she had some bad times in there this time through) and he placed his hand on her shoulder and told her, "You don't have to worry about that. You've got 2 weeks to a month."I'd complain about him telling her this...except that I've kinda had a "gut" feeling things were going downhill since she went in the hosptial in the first place.
My brother, bless his heart, is doing everything he can possibly think of to try and "save" her even at this stage and I try to remind him as gently as I can that what she does or doesn't do is HER decision to make. None of us like this and every single one of us keeps HOPE, even now...but sometimes reality is a bit overwhelming.
I'm working with my stepdad and hospice to fill in when he goes back to work for the times that there can't be an aide there. SF works (right now) from around 1pm to 1am...so I'll be there late nights with her. My husband is being so wonderful about it all. We sat and talked about how to work out "grandma's girl" being with me up there but me not wanting to wake her each night to come home after SF gets home. He told me maybe it would be better to just sleep there at night, come home and do what needs done here during the day, then head back up in the evening. He's amazing.
I always enjoyed bringing happy news to the board...and I HATE posting this kind of glum stuff. It's just not "me"...or "us". However...it's life, and it's not always happy, I guess. Don't worry though, the humor is still alive and active in our lives. Mom called me a wuss while laughing at me for crying after she got the news from Dr. B.
Gawd this is hard!
Mom told me,"I never knew dying could be so hard." I told her, "I never knew LETTING you die would be, either." -
Lori...
Gawd...it all seems like so much right now, I know! You'll make it, one minute at a time if you have you, but you'll make it. I know you will. Somehow, we all make it even when it seems impossible.
I think talking with your mom about donating her boday is a good idea...as was said, it should be HER decision. The one thing I'm wondering about, though, is that I know she gained alot of weight from the steriods and Mom was told that because of HER weight, she could NOT be used as a cadaver...although she wanted to VERY badly. It's something you might want SF to ask about before hand.
Much love, many prayers, and tight hugs coming your way,Lori.
xoxo
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Mom (apparently) had been holding out on us about some symptoms she'd been having. (Big surprise there
) She's having herself a little stay in the hospital because of blood clots in the arteries in both lungs and one in her left leg for good measure! LOL
She went in Monday afternoon with alot of bit*hing and moaning about not wanting to and her Dr. says she'll be there a couple days more until they know they have her in the clear. After the ruptured vessel in her eye after the last time through anticoagulation therapy they're being extremely careful.
I've had my ups and downs about it...it terrifies me every time she goes in with PE and I suppose it should. The dr has told her before that each time she throws clots she's got a 50/50 shot of it killing her. But I'm trying to keep the "what if's" at bay and keep trucking along. So much going on right now that I don't have time to be around here like I'd like to be. Know you all are always in my thoughts and prayers.
xoxo
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Mom's joked alot that she's got to be the only cancer patient that GAINED weight! But I really do think that keeping up the calories in whatever form they took helped out.
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Awwww Sh*t! Dang it! And all those other things I know you want to say. Gawd Lori...My tears are pouring for you and Mom. Holds you tight and hugs you bunches.
xoxo
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I sure do like "stable"
And see...you beat me to posting it! LOL
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Mine seems simple (and it is) but there's a story behind it.
My best friend in highschool was also "Melissa" so we had to figure out a way that we both weren't answering when someone would call for us. We went by our first names, Melissa, and our middle initials...mine is K...for...well...Kay! LOL Hers is Anne.
As time passed I went back to being "Missy" after years of thinking it made me sound "too young" (HA!) and we shortened her Melissa to "Missa". Now we're Missy and Missa...but the Missy K stuck. Most of the time I used (for various other sites) missyk1975...just add the year I was born!
This was FUN!! It was GREAT to read everyone's stories!
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This is probably horrible of me...but when a friend of mine who I'd lost contace with contacted me again and in catching up we discussed his wife having been treated for breast cancer and Mom having lung cancer...the first words out of his mouth were "Does she smoke?" I asked him, "Does or did your wife? You DO realize that "they" SAY smoking increases your risk of EVERY type of cancer...not just lung cancer, don't you??"
I find it VERY unfair that everyone seems to ask that question when it comes to lung cancer but NOT with other cancers!! How would those other ppl feel if the first question was about an addiction that they might have broken (or might not have) many years ago??? Puts a new perspective on it for alot of people.
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Kim...
I know it's hard to see Mom on so many different pills constantly...mine was the type of person that you had to about beat over the head to get her to take even something for a headache! LOL Just remember that not ALL of the pills are going to be all the time. At the height of Mom's treatment she took so many that we had to have a schedule to figure it all out (and even THEN we were lost sometimes!) and now she's down to about three a day...and sometimes she doesn't even take all of them! LOL
It's a rollercoaster ride, that's for sure...there will be many ups and downs along the way...but once you buckle in tight, you can ride them out as will Mom.
Many prayers for you and your family.
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Well, this will teach ME not to check in for a couple of day! Damn, damn, damn is right! However...thank goodness they think the radiation will take care of it! (Not to mention all the experience saying the same from these wonderful ppl who've been there before!)
Lori...praying the treatment helps. So glad your sf is "getting it together" so to speak and being there...now if the dr.'s would treat Mom like a person instead of a "patient". *Sighs* Keep on their cases about it. Nothing drives me nuts faster than either Mom's doctor's or my daughter's passing them over as what i see as insignificant when THEY are the ones who are going through whatever it may be. Hope that the slurring straightens out, too...any more idea on what that might be?? When's Mom due for another MRI??
Crossing fingers that all comes out well in the end!!
Many prayers continuing for you, mom, and your whole family!! xoxo
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I know that since dipping out toes in the awareness raising/fundraising arena on the 4th...I'm raring to go...just trying right now to focus in on SOMETHING instead of having a billion ideas all floating around in my brain all at once!
All the ideas sound just GREAT!!!
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Lori...
Sooooooooo glad you guys are enjoyin life!! Feels good, doesn't it? Your post made me smile so big and feel so happy in my heart!
Your funny stories remind me of things that go on at Mom's too...especially the dog. We joke that Mom's dog is the only "person" she's ever apologized to! LOL
I'm right there with ya with letting her have the icecream and such. Mom says she's the only cancer patient she knows who GAINS weight...and told her oncologist when he mentioned it "Well, you told me to eat, so I did!!" Now she's losing weight because she can't stand long enough to cook and doesn't really like what my step-dad cooks...so every once in a while we kids go up and cook a ton and let her eat as much as she'd like and stock her freezer with ice cream bars (ohhhhhhh those dove ones are GREAT). Last night she ate a biscuit and a half covered with creamed chicken. Yummmmm and I know she's had a good meal that will give her a little bit more energy.
Keep up the great work, Lori, and keep those laughs going! Much love and many prayers...
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Jen...
WHEW!! Hopefully weaning him off the steroids a little more gradually will take care of it!!
Now, take a deep breath....let it out...and get ready for the next thing, whenever it comes. LOL
I'm so glad that you have a network of people around you that can support you. I've found that, too, in the friends I've met online (and alot of them, too, in real life!). I was truely surprised, as we began our journey, how many people jumped right in behind us to help us along...many not knowing "Mom" other than from things I've talked about! I have been truely blessed by those friends, as I am by the people here who help me every day without knowing.
Much love and many prayers...I'm gonna send you a message here in a minute...
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You're welcome to bang your head against this "wall" any time you'd like.
I know your frustration at what the doctor's think are best compared to your thought on it. Sometimes they are right, sometimes they're not. It's the nature of the disease and of being human beings dealing with it. The effects are different for every single person doing whatever treatment there is out there.
From the sounds of it (Just my opinion) the Oncologist seems to think that with your Mom's history, it wouldn't be a good idea. Have you asked another oncologist? Or two? Second opinions (and thirds) never hurt and can sometimes give some perspective when it seems so far away. Sometimes they'll do it right over the phone.
My best to you and your Mom...much love and many prayers...
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Jen...
Like Cindi said (she's so full of it....good advice that is
) take one day at a time and if you need to, take one hour, or one minute, at a time. It's a hard thing to learn to do when, if you're like me, always looking to the NEXT thing coming so you can be prepared for it. With this disease there isn't any real way to prepare for what might be next because ya just never know. For me, it's writing, writing, and writing some more. I have two blogs that I post on regularly (I don't care if anyone reads it or not LOL) and in between I write out every single frustration, every bit of anger (because that sneaks in too), every bit of happiness, on a "journal" on my hard drive on my computer. It allows me to "speak" honestly and truely with, if no one else, myself...and get rid of those feelings I don't want and remember and relive the ones I'd like to keep.
I also went and saw my doctor and she gave me a perscription for xanax. I'm kind of an insomniac anyway (and of course, this disease doesn't help any with that)and I stress about thunderstorms...add on top worry and loss of control surrounding Mom's disease and I was a freakin MESS! LOL Now, when my stomach starts lurching and I feel like I'm about ready to lose it...I "take a pill".
I hope your dad is feeling better and getting a bit stronger. Much love and many prayers...
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Carleen..
I have no words capable of expressing my sorrow at reading this post. Your love for eachother is a shining testement to "true love" if I've ever seen one. It does, and always will, continue.
God bless you and keep you and give you strength.
I'm so truely sorry, Carleen...
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I couldn't help by cry as I read this...
Carleen, your love for eachother is never-ending. Please, accept my condolences as I wrap you in hugs and prayers for peace.
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The article in MY local paper (different from Mom's) came out Wednesday but i didn't get my hands on it until today....here it is. I couldn't link y'all to it because the Madisonian makes you pay to read it online...so I just typed it out! LOL
From the Winterset Madisonian...Wed. June 28, 2006
Celebration with....artistic expression
If you're from the Winterset area, you might know Melissa Ham and her brother Mike Fletchall (they also have a sister, Becky Fletchall, who lives in Redfield).
Melissa assists students who have behavior disorders at the Winterset Junior High School, while Mike, better known as "Fletch", is part of the local band The Barrelhouse Rockets.
Their mom is Sue Seymour of Minburn. She has lung cancer.
About lung cancer
In May of 2005, Sue was diagnosed with Stage IV non-small cell adenocarcinoma. In other words, Sue found herself facing the final stage of lung cancer.
"The cancer that my mother was diagnosed with is the one most often found in non-smoking women," Melissa (Missy) said. "Lung cancer is not just a smoker's disease."
It is now a year later, and after chemotherapy and radiation, including treatments pinpointing areas of cancer that metastasized (or spread) to her brain, Sue is doing remarkably well.
With Sues's diagnosis, Melissa and her family began working to raise awareness about lung cancer research funding and support. The now-informed Missy shared these 2005 federal government statistics on cancer research spending, based on the number of dollars spent in relation to cancer morbidity.
Breast cancer: $23,473 per cancer death
Prostate cancer: $14,368 per cancer death
Colorectal cancer: $5,215 per cancer death
Lung cancer: $1,829 per cancer death
Yet, lung cancer kills more American's each year than breast, prostate, colorectal, and pancreatic cancers combined.
In acknowledgement of these statistics and her own personal family experience, Melissa wants to get the word out. "The need for lung cancer research funding is ever-increasing, and the need for a support system for the patients and families of lung cancer is even greater."
So how does a family from central Iowa go about raising awareness? They get creative.
"On July 4, 2006, my mom-Sue Seymour-will be in the town 'triangle' of Minburn with her bald head and a marker, taking free-will donations for LCSC [Lung Cancer Support Community] for the chance to write something (appropriate) on her head or other exposed parts of her body to raise awareness of lung cancer issues."
The mission of LCSC is simply "to provide the best lung cancer center on the web that fosters hope and support for those diagnosed with lung cancer and their families" (from www.lchelp.org). LCSC is completely funded by donations.
Everyone's Invited
The fourth of July, the Minburn community will celebrate in grand style. Almost straight north of Adel, the small town plans a 10 a.m. parade preceded by a speech from long time resident, beauty shop owner, city council member, neighbor, friend and cancer fighter-Sue Seymour.
"There are few people who call Minburn home that do not know Sue (and her husband Ralph) and she will also be taking some time during the celebration to thank the community for their continuing support while she fights this disease," added Melissa.
On the list for the day's festivities are: children's games (of which a few of Sue's grandchildren Sabrina Ham, Ashley Hendricks, Dennis Neal, and Patrick Fletchall will surely enjoy), food, entertainment, an evening pie auction, and of course a traditional display of fireworks to complete (the) celebration.
How important is this event to Sue's family?
"When she was first diagnosed, they told her that if she did nothing she would have three months, and if she treated it aggressively she might see a year," Melissa said with a slight catch in her voice. "Now, we're at 13 months since diganosis."
Research makes a difference.
On July 4th, consider joining the festivities in Minburn or just stopping by, Sue's family would be glad-and grateful-to see you.
-Jesseca Newton-
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Liz...
Welcome! As you can see already...statistics and prognosis hold little water on this board
My mom was told, at diagnosis, that she had 3 months to a year AT THE MOST...we're now 13 months since her diagnosis. I remember the feelings after she was diagnosed...and this is truely a rollercoaster you've climbed onto. The good news is that there are many, many wonderful people riding right along with you!
Please, keep us up to date, vent to us, and let us help you (and her) through this journey.
Many prayers for you and Mom...
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WOOOOOOOOOOOHOOOOOOOOOOOOOOOO! I'm gonna let all my friends down in that area know so that maybe, just maybe, there will be someone there i know that can take pictures for me!!!! AWESOME! And well-deserved!
xoxo...and for all you do and extra x and o
The good thing is...we all understand!
And she'll get to know her ever better as she grows and hears stories about your amazing mother!
My mom was told, at diagnosis, that she had 3 months to a year AT THE MOST...we're now 13 months since her diagnosis.
The Boxing Coach
in CAREGIVER RESOURCE CENTER
Posted
Wow Val....that's all I can say is Wow.
Thanks for putting that link up!
xoxo