#52426 12-05-2007 06:18 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Lois, You didn't offend me. I agree. Maybe my mom's friend can come over Friday, and my Nana on Saturday. I need to get myself back in control, I've got two beautiful daughters to take care of....and who I want to spend some alone time with. Thanks. Hope Buzz is doing well. Love, Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52427 12-06-2007 03:22 AM | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2006 Posts: 93 | Jim,
Got my meds early. LOL
The day of hubbys first biopsy, the start of this journey, I got stuck in an elevator at the hospital. My worst phobia. PANIC ATTACK big time. Really think the meds that the DR had provided kept me from just folding. Felt like I had to be strong for hubby and the meds just really help.
Donna, Keep on posting. Sometimes it helps just to "pound" it all out on the keyboard.
Maggie
caregiver to husband right tonsil stage 3 35 IMRT TX completed 1/5/2007 PET Scan clear 3/07 biopsy 9/07 clear 1st yr PET scan 12/18/07 clear
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#52428 12-06-2007 07:20 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I will agree about this keyboard. I'm glad you got something to help.. By the way , my lady was here last nite and we had a good cry. I guess like a lot of others with this disease I was one nasty old man. LOL I hope your mom shows some of her old self for you and you can enjoy her being with you as more than a care giver.. Have a good day.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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#52429 12-06-2007 12:10 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | so Jim.... how did it go?
Mom was a bit better today. Finally got her to start taking a little more of her pain meds, hopefully that will help.
Thanks.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52430 12-06-2007 12:39 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I wish I could say it went very well,.Lets just say it went fairly good but wasn't what I was hoping for. We've been together 5 yrs and most of that time was fantastic. She is one beautiful bright blue eyed lady and much younger than I am , but the age thing never bothered her at all. I don't think we prepared for the aftermath of this OC nd it got to me and I took it out on her she says. I go for another PetScan tomorrow because the right side on my tongue is like the left was. Even have the jaw and ear ache. I sure hope that doesn't make it worse for the 2 of us. They also saw a flash in my lungs. Have a good one Donna and keep up the good work..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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#52431 12-06-2007 12:47 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Donna,, I should say that she wanted to get married and I was hesitant.. I would marry her in a minute and take care of her like a Queen. I'll never know why I hesitated , even for a second. Guess I'm just another one of those that say DUH LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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#52432 12-06-2007 06:22 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Donna honey, I relate to every single feeling you expressed in your post.........every feeling from both sides. I remember my first operation and radiation. My second daughter dropped out of college in Maine to come home and help and she is STILL trying to finish up her humanitarian degree since most of her Maine credits wouldn't transfer here. I became another personality from about the middle of radiation for quite a few months after that. I became sharper of tongue, wasn't as gentle a person as I usually am, and would have little breakdowns that simply were not fair to my girls. BUT, that is the process of this disease and it took me awhile to figure it out. After my radiation, I remember sitting on the couch with Amy (my second oldest and designated caregiver)and sobbing, holding a picture of all of them and asking what will I do if treatment didn't work and I die? What an awful moment that must have been for her and I regret it. But, again, that's the process of the disease. If your a family, then every family memeber will be hurt in their own way. My 11 year old that summer never left the house, waited for me to get home from radiation and then followed me around. I used to wake up from a nap with her laying beside me, holding my hand. Our kids become such vulnerable victims of our cancer.
This time around, I did it differently. I could see the same pattern setting in. Amy feeling she had to take on all the medical issues, while trying to carry a full course load, Megan being "mom" and filling in for me, and Skylar wanting to follow me around again. I could see everyone putting their lives on hold. I put a stop to it quickly and it really helped.
Keep in mind, though, that your mom hasn't had the experience I've had with this disease and what it can do to our children. I've been where she is and I KNOW I irritated my girls in more than one way. Difference for them is that there are seven of them to play tag team!! You don't seem to have that benefit.
Take my advice Donna and start slowly stepping back from your mom and allow your dad to step in. If he is more active in her care, I bet he'll feel happier himself. Tend to your family, especially at this time of year. I can PROMISE you that if your mother was "herself" right now, which she isn't , that she would be giving you the same advice.
Much love, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#52433 12-06-2007 06:48 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Donna
PLease know that I am thinking of you , and I would think what you are going through is normal.
I don't know though , I haven't had to care for someone who was ill. I mean I guess I am the caregiver here cus I am the MOM and I don't know how to let them take care of me . and I am sure I was short as well. I just figured I needed to do it cus my kids were to young and My husband , well there just was alot he wasnt going to do.
My 14 year old helped me alot and still does somtimes, but as Minnie said they changed ( the kids) the way they were around me . I def think it ha changed me though ,,in Good and BAd ways !!
So take some time for you and your girls and know that you can come here anytime we are hear to listen.
Shar
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#52434 12-06-2007 07:17 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hi Minnie, SO nice to hear from you, I think about you often. Thanks for your thoughts and sharing so much. I still feel like a heel for complaining, but it was building so much inside. I have let my dad take over quite a bit, the lymphedema treatments mainly. He and my mom have a wonderful relationship-even during this crisis, you can see that they need each other to get through it. There seems to be a tag team effort between my dad and i that seems to work out nicely, without having to say too much. Today I woke up sick as a dog! I have the same stomache bug my little one Jessie has. I was unable to do anything all day and even now I feel iffy. Dad cancelled his work appts and ended up having to take my older daughter to school, her bus came 7 mins early. He then came back adn drove my mom into Philly for her appt. He never complained. He is such a wonderful man. I admire my parents relationship. My mom has never been needy before-ever. She's so frightened, it's sad. I think that may be whats wrong with me too, I am frightened. My kids are changing, Jackie wants to be out of the house as much as she can-which scares me, she's just under 18, my younger Jess is either ok, or glued to my side. I can't believe I let loose on everything inside, but it did help. I think I am just tired. Being sick hasn't helped but I did see mom trying to help me-bringing me tea, checking on me, and then seeing me up she would break down again. It's an awful ride. I can't wait till she feels better again. she was doing so well after rad/chemo, prior to brachy and left neck dissection. Oh well, it is what it is. I think tomorrow I may call Fr. Mike and see if he can come over for a visit--have never asked him to the house but think he would do it for me. He is an incredible man. How are yo feeling? Shar, Thanks. Did you get your phone call yet? (e-mail) And Jim- Give it time, maybe she'll be back. Good luck tomorrow, let us know what comes of your appt. Love, Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52435 12-06-2007 08:12 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2006 Posts: 57 | Oh Donna, bless your heart! Don't feel guilty, because, if you do, I will have to! LOL
We do the best we can. We love these people, and expect them to be there for us forever, and then something like this disease compromises our expectations.
It's nobody's fault......I choose to believe that all our experiences in this life are only lessons that we need to learn to expand our soul. Granted, this lesson is horrible. But, we learn so much from one another as a result.
Can you imagine life without the people on this board, even if we met for this specific nightmare? I know it has given me so much faith in the human heart. I can honestly feel the love radiating from these wonderful people. And the support I get from all of you.......it ripples into my life, and I know my children are better people because I've found you all.
I watch Dennis sleeping, and I can't believe that this is the person I'm now married too. I find myself daydreaming about that boyfriend who wanted to someday marry, and I turned him down. Is it a diversion? Oh, hell yeah........but, I know, that this is where I'm supposed to be.
It's normal to be upset, scared, mad, ......MAD! It's normal to feel slighted. You have every right to ask "why"? You are just like all the rest of us. Trying to find the just in this life.
Donna, hang in there babe. You are not alone. I know I'm going through the same feelings you are, and would love to talk anytime you feel up to it.
In the meantime, know that you are never alone, and there are people here who love and understand every emotion you are experiencing.
Love, Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
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