Cancer Support and Caregivers Who Are Trail Blazers!

[LeftWriteFemme]

Originally Posted by Tommi

Great to hear you are going to a dedicated breast center for follow-up.

All I can say is, What a Difference going to a dedicated breast center has made!! After having been to three doctors (all working as a team mind you) in three consecutive weeks, who A. seemed surprised to see my sponsee who has breast cancer and B. had to be told why she was there..........even though I was in the office with the first doctor when he made the phone calls to the other two......I was not happy.

This Monday when we went for a second opinion at the Livingston Breast Center:
(< link)
We saw Doctor Sarah Schaefer, who has been the doctor for my sponsor Nan and also for close friends of my sponsee's. Amazingly she knew exactly why we were there. None of the other doctors had managed to get the pathology report, Doctor Schaefer and the Center use something called Nurse Navigator and had those results with in 5 minutes and was able to lay out a plan with us during the first visit.
Also I had been looking at a study using Reparixin, the other three doctors, blew it off though they had never heard of it, Doctor Schaefer looked it up right there and we talked about the pros and cons and how she would cooperate with Montefiore if my sponsee chose to participate.

Tomorrow my sponsee is going to see Doctor Dean R Cerio, who is a plastic surgeon who works in cooperation with the center. The plan is that my sponsee will be getting the breast reduction she has always wanted as a part of the lumpectomy.....which is also amazing because the other three doctors had told her there was no way.
As part of a small personal victory, my sponsee is going to see this surgeon with her friend who is also a patient of this doctor and I am going to have my mamo and then see a pulminologist (I failed my spirograph test)
I realize that the bigger the team the easier this is going to be for all of us.
My grandmother used to say 'many hands make light work' and she was sure right. Having the support of the people on this thread and the folks we know in recovery, plus our friends and family has made this lonely thing feel like a group effort and quite survivable. Thank you so much!!!

[deb0670]

I lost my Step-Dad to Cancer in November.
In January, he was diagnosed with bladder cancer and he went out and did everything he possibly could do to fight it. He did the chemo, he changed his eating and drinking habits, he started exercising more.. you name it.
The cancer spread too fast to his lymph nodes, so they could not do the surgery they were going to do. He fought so hard to beat it.. but he just couldn't. My mom was by his side the whole time. He was her true soul mate and the only man she was ever really in love with.
It hurt me so badly watching from a distance what she had to go through.. i could not even imagine.
I was never really close to my step dad due to him never really wanting to be close to anyone, including his own kids. But my mom.. i love her dearly. When she called me to say he just had a matter of days, all i could do was pray and try to comfort her the best i could.
Then when he passed, she called trying to sound so brave.. but broke down. I felt like such a horrible daughter because i could not be there for my Mom when i felt like she needed me the most. She lives in California and we are in Georgia, and we just could not afford the trip.
She said it was ok and she understood.. but still.. i. should. have. been. there.
She is still in the grieving process, and will be for quite sometime,
They were together for 16 years and married for 14. They were mini-storage managers and lived in an apt above their office. So now, Mom has to go upstairs to an empty apt and go to work without him every day.
She was going to move out here to be with us in about 6 months.. but she decided to go live near her sister instead.
i have mixed feelings about that.
Anyways,
sorry for the book.
i am still keeping y'all in my prayers.

[DapperButch]

Originally Posted by LeftWriteFemme

All I can say is, What a Difference going to a dedicated breast center has made!! After having been to three doctors (all working as a team mind you) in three consecutive weeks, who A. seemed surprised to see my sponsee who has breast cancer and B. had to be told why she was there..........even though I was in the office with the first doctor when he made the phone calls to the other two......I was not happy.

This Monday when we went for a second opinion at the Livingston Breast Center:
(< link)
We saw Doctor Sarah Schaefer, who has been the doctor for my sponsor Nan and also for close friends of my sponsee's. Amazingly she knew exactly why we were there. None of the other doctors had managed to get the pathology report, Doctor Schaefer and the Center use something called Nurse Navigator and had those results with in 5 minutes and was able to lay out a plan with us during the first visit.
Also I had been looking at a study using Reparixin, the other three doctors, blew it off though they had never heard of it, Doctor Schaefer looked it up right there and we talked about the pros and cons and how she would cooperate with Montefiore if my sponsee chose to participate.

Tomorrow my sponsee is going to see Doctor Dean R Cerio, who is a plastic surgeon who works in cooperation with the center. The plan is that my sponsee will be getting the breast reduction she has always wanted as a part of the lumpectomy.....which is also amazing because the other three doctors had told her there was no way.
As part of a small personal victory, my sponsee is going to see this surgeon with her friend who is also a patient of this doctor and I am going to have my mamo and then see a pulminologist (I failed my spirograph test)
I realize that the bigger the team the easier this is going to be for all of us.
My grandmother used to say 'many hands make light work' and she was sure right. Having the support of the people on this thread and the folks we know in recovery, plus our friends and family has made this lonely thing feel like a group effort and quite survivable. Thank you so much!!!

Glad things went so well for your sponsee (and glad to hear that you are taking care of yourself, too!)! Yes, I have heard it does make a big difference if you are at a breast center. Oncologists are more motivated because it is their life's work, instead of all cancers.

Glad to hear so many are pitching in to help. They say one should have a "cancer team" when facing this. I can't remember all the different roles, but Keith Block, M.D. wrote about it in his book ("Life Over Cancer"). I'm sure you can find the concept in other places. Roles include for example, the "researcher" who looks up information, goes to all the appointments, and organizes it all, then there would be a person who had time to do driving to chemo/radiation/testing, someone may be good at making meals, etc. It is too much for one or two people to manage. I know it was a lot for just my mom and girlfriend. However, I was able to do a lot of things for myself for the bulk of my treatment (during chemo), so it was only about two months I was useless (after surgeries). My brain was never really clear though during all that treatment. I think I even wrote some idiotic stuff on this website during that time!

[DapperButch]

Originally Posted by deb0670

I lost my Step-Dad to Cancer in November.
In January, he was diagnosed with bladder cancer and he went out and did everything he possibly could do to fight it. He did the chemo, he changed his eating and drinking habits, he started exercising more.. you name it.
The cancer spread too fast to his lymph nodes, so they could not do the surgery they were going to do. He fought so hard to beat it.. but he just couldn't. My mom was by his side the whole time. He was her true soul mate and the only man she was ever really in love with.
It hurt me so badly watching from a distance what she had to go through.. i could not even imagine.
I was never really close to my step dad due to him never really wanting to be close to anyone, including his own kids. But my mom.. i love her dearly. When she called me to say he just had a matter of days, all i could do was pray and try to comfort her the best i could.
Then when he passed, she called trying to sound so brave.. but broke down. I felt like such a horrible daughter because i could not be there for my Mom when i felt like she needed me the most. She lives in California and we are in Georgia, and we just could not afford the trip.
She said it was ok and she understood.. but still.. i. should. have. been. there.
She is still in the grieving process, and will be for quite sometime,
They were together for 16 years and married for 14. They were mini-storage managers and lived in an apt above their office. So now, Mom has to go upstairs to an empty apt and go to work without him every day.
She was going to move out here to be with us in about 6 months.. but she decided to go live near her sister instead.
i have mixed feelings about that.
Anyways,
sorry for the book.
i am still keeping y'all in my prayers.

Hey, deb. It is a couple of months after a person's death that supporters tend to wander away and go back to their lives. They think about the survivor less and contact them less. It is when the fanfare of support/activities around the death, dies down that the survivor really needs someone. The best thing you can do for your mother is to save your money and fly out there when you can. She STILL needs you. You can still be there for her. It is not any less important than it was right after her husband's death.

[TruTexan]

LWFemme, I am so glad your sponsee is going to a dedicated breast cancer center. That is where I go for mammograms every year and this year they found something about the size of a dime to a penny or so and the doctor was so cautious in his choosing to go ahead with a biopsy just to make sure. I wish your sponsee well in her treatment plans and in her recovery. I can't tell you enough how important it is for us as women bodied individuals to have those mammograms done every year and at the same place every year so they have your records to compare and refer back to.
I wish I had a woman doctor, but I did have the chief of oncology come to talk to me about my results and look at the ultrasound himself. He was very sweet and caring individual. I'm glad to have the opportunity to go to a dedicated breast cancer center locally, I think it makes a world of difference that those doctors are dedicated to that special area of our bodies.

As for me, I shall try to remain focused into today and not worry about things to come or even about tomorrow, for tomorrow hasn't even come yet.

[deb0670]

Thank You, Actually she is flying out here in May to see her new great-granddaughter when she is born. My son lives three houses down from us and he and his wife are having their first child and it is our first granddaughter and my Mom's first great-granddaughter. While my mom is here, we are driving up to Illinois so she can see her two great grandsons for the first time.
So, that will be good for her.

Originally Posted by DapperButch

Hey, deb. It is a couple of months after a person's death that supporters tend to wander away and go back to their lives. They think about the survivor less and contact them less. It is when the fanfare of support/activities around the death, dies down that the survivor really needs someone. The best thing you can do for your mother is to save your money and fly out there when you can. She STILL needs you. You can still be there for her. It is not any less important than it was right after her husband's death.

[DapperButch]

Originally Posted by deb0670

Thank You, Actually she is flying out here in May to see her new great-granddaughter when she is born. My son lives three houses down from us and he and his wife are having their first child and it is our first granddaughter and my Mom's first great-granddaughter. While my mom is here, we are driving up to Illinois so she can see her two great grandsons for the first time.
So, that will be good for her.

Yes, that is fantastic. Plus, it gives her something to look forward to....a very good thing!

[deb0670]

Exactly. She has a lot of friends near her and work with her, plus my Aunt is only a couple of hours away from her, so at least she has support around her.. i just wish we lived closer to each other.

[Tommi]

Knowing we don't need to carry a heavy load alone helps the scary days and lonely nights.

As a caregiver over the past several years, and losing one friend to cancer, and an estranged ex to Alzheimer's, then my second cancer adventure and surviving therapy.there is so much to be said about all of us sharing here on the Planet.

No matter what goes on in our lives and those of the ones we know and love, we have this cyber connection of understanding, concern, advice, and bonding.


And I have NFL today

[TruTexan]

Today has been a hard tough day for me. I am getting more scared as the days pass closer to my biopsy on wednesday. I am taking my anxiety meds and trying to remain in the day I am living in, but it's not working well for me today.
My back is killing me so I know it's stress related. Everytime I have major stress, it all goes down into my injured back and its excruciating today. UGH.
I am not happy to go through this with no support at home other than my mom stressing out over it. She isn't much support for me. I have only this thread to talk to others about my fears and I am grateful that you listen to me and help me make it through the day when I speak my fears. Thank you.

[Tommi]

Hi there Justy, every day can be so darn different. Up one, down the next, and then any old pain just wants to wipe ya out.

Wondering ? There is a pretty good group of members on the Planet that live in Texas.
I knowTexas is big, and the Planet is worldwide, but wanted you to know you may have someone close by that you could shat with, or maybe just meet for some Texas BBQ.

I forget about cancer. I am reminded when I get that call for an appointment. Otherwise, I kind of just move on with my life.
One Day At A Time, is what I can handle. Of course Aug.through Oct. daily radiation to my pelvis was a kick in the every day, but it went fast, and I had minor side effects. Soon as it was over, life begins anew again.

Just For Today, I walk tall (I am height challenged , fixed my sprinklers, and watered my lawn, and hope there is someone else in the world that a smile can help.

[TruTexan]

Originally Posted by Tommi

Hi there Justy, every day can be so darn different. Up one, down the next, and then any old pain just wants to wipe ya out.

Wondering ? There is a pretty good group of members on the Planet that live in Texas.
I knowTexas is big, and the Planet is worldwide, but wanted you to know you may have someone close by that you could shat with, or maybe just meet for some Texas BBQ.

I forget about cancer. I am reminded when I get that call for an appointment. Otherwise, I kind of just move on with my life.
One Day At A Time, is what I can handle. Of course Aug.through Oct. daily radiation to my pelvis was a kick in the every day, but it went fast, and I had minor side effects. Soon as it was over, life begins anew again.

Just For Today, I walk tall (I am height challenged , fixed my sprinklers, and watered my lawn, and hope there is someone else in the world that a smile can help.

Thanks for this Tommi. You hit the nail on the head about living in the day, the moment. It's all I can handle most days too. I"m kinda nervous today about tomorrow's procedure, but I"m working on staying into just today for one day at a time.
As for members here in Tx, yeah there are a bunch of them, but none close to me. I can't travel cause I have no funds for that during the month, living on my disability check doesn't allow for much more than rent, bills, some groceries. Never allows for me to have anything different. Even when I go to visit my dad and grandma and my cousins, my dad helps me with gas money to and from. I'm doing all I can to keep my costs at home on the minimum and doing without things that aren't basic necessity.
I wish I was still working, but my back, ptsd and anxiety, depression won't allow for it. I can't handle being around people larger than just a couple or maybe 4 tops. I"m okay with family because I know them all my life so they don't make me nervous or anything. Sometimes even they are too much for me to be around.
Anyway, I've gotten a couple of numbers from friends online that I"ve called and talk to them about all I am about to embark upon. So I do have a reach out and touch someone plan when I need it. And they are good folks too.

Thanks again Tommi, for posting and helping me to remain into today.

Justy

[MysticOceansFL]

Just wanted to let folks know who are dealing with cancer I really do "feel" for you although I'm not a caregiver...... after I got out of the Military back in 1983 I had a year left to spend with my mother and care for her and be there if she needed anything, she passed away in 1984 with bone and lung cancer, Please I don't want sympathy I just wanted those to know who are dealing with it there are people here who do care a great deal!!!!!

[Tommi]

Originally Posted by MysticOceansFL

Just wanted to let folks know who are dealing with cancer I really do "feel" for you although I'm not a caregiver...... after I got out of the Military back in 1983 I had a year left to spend with my mother and care for her and be there if she needed anything, she passed away in 1984 with bone and lung cancer, Please I don't want sympathy I just wanted those to know who are dealing with it there are people here who do care a great deal!!!!!

Hello:
Thanks for that kind of support MysticOceansFl. When you are close to someone who who has had, or know someone who is ill with a dreaded disease, it helps to know someone else understands, knows, and has shared the pain, confusion, loss and love we may know.

[Tommi]

"The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived."
Gilda Radner

Read more at http://www.brainyquote.com/quotes/ke...2A2Scv8lUmV.99

[mustangjeano]

Originally Posted by TruTexan

Thanks for this Tommi. You hit the nail on the head about living in the day, the moment. It's all I can handle most days too. I"m kinda nervous today about tomorrow's procedure, but I"m working on staying into just today for one day at a time.
As for members here in Tx, yeah there are a bunch of them, but none close to me. I can't travel cause I have no funds for that during the month, living on my disability check doesn't allow for much more than rent, bills, some groceries. Never allows for me to have anything different. Even when I go to visit my dad and grandma and my cousins, my dad helps me with gas money to and from. I'm doing all I can to keep my costs at home on the minimum and doing without things that aren't basic necessity.
I wish I was still working, but my back, ptsd and anxiety, depression won't allow for it. I can't handle being around people larger than just a couple or maybe 4 tops. I"m okay with family because I know them all my life so they don't make me nervous or anything. Sometimes even they are too much for me to be around.
Anyway, I've gotten a couple of numbers from friends online that I"ve called and talk to them about all I am about to embark upon. So I do have a reach out and touch someone plan when I need it. And they are good folks too.

Thanks again Tommi, for posting and helping me to remain into today.

Justy

Hi Justy, just dropping by to say that you are in my thoughts tonite and tomorrow. Tell them that you want the biopsy results ASAP (grin)--but seriously, hopefully you will have the answer very quickly. Hang tough Buddy. You are doing great. Jeano

[TruTexan]

Originally Posted by mustangjeano

Hi Justy, just dropping by to say that you are in my thoughts tonite and tomorrow. Tell them that you want the biopsy results ASAP (grin)--but seriously, hopefully you will have the answer very quickly. Hang tough Buddy. You are doing great. Jeano

Thanks Jeano, I appreciate ya buddy. I am going in for that biopsy this afternoon, have to be there at 150pm central time. I may not know the answer to the results of the biopsy for up to 2 wks if they send it out for second opinion , and that's the part that will drive me nutty. The waiting part, the fear of the unknown. But I'm going to take it one moment at a time during the day I live in one day at a time. And pray that it comes back to mean nothing to worry about.
We'll see. I may not feel like going online tomorrow, I don't know how much pain my boob will be in after the local wears off. I might feel like that needle is still in there probing around LOL. I'll keep posting to stay in touch though it may be a day later. Thank you all for your support and love.
Justy

[TruTexan]

I had my biopsy done, man does my breast hurt. OUCH! Ok so now the waiting game begins and this is the part that can make you go mad crazy if you think think think about it too much. OK I"m gonna stay in the moment of one day at a time and this will keep me sane. He took 3 samples for biopsy today and I felt every bit of the snipping even though he deadened the breast as much as possible with a local there. Still kinda feels like that needle is still in there but I"m sure it will be better tomorrow and expecting bruising too from what he said.
I'm using ice packs on it for the next couple hours to help prevent blood clot at biopsy site and to help minimize the bruising.

On top of that stuff going on, my lower back is killing me today so that is taking away from me focusing on my breast hurting or thinking about what's he gonna say now?! I"m ok, I"ll be ok. I"m good to go and ready for anything that may come. At least I at this very moment I am. He's going to call me when he has the results of the test to discuss it with me. Whew, glad the biopsy is over with.
I hope that every that is a caregiver or cancer patient is doing better today, stay strong, stay into today, keep your head high and know you aren't alone.

Justy

[Tommi]

Hey Justy, Glad that is over with , I am sure. Ice helps, so does getting some solid sleep after this ordeal.
While waiting you could play some brain games,

Do these everyday, or some kind of challenge.

challenge yourself, and see when your moods, your sleep, your pain, and everything else contribute to your braininess.

I love Lumosity. I got a years subscription as a Christmas present, and it is awesome to see how it works. I think they have free games too.

[TruTexan]

Originally Posted by Tommi

Hey Justy, Glad that is over with , I am sure. Ice helps, so does getting some solid sleep after this ordeal.
While waiting you could play some brain games,

Do these everyday, or some kind of challenge.

challenge yourself, and see when your moods, your sleep, your pain, and everything else contribute to your braininess.

I love Lumosity. I got a years subscription as a Christmas present, and it is awesome to see how it works. I think they have free games too.

Yeah I"ve seen that advertised. I have trouble focusing let alone reading. I wonder if that would help me to be able to focus better. hmm, I'll have to check it out. I get bored easily too, so maybe these won't be boring to me to play. I play in the arcade here and yahoo games too at times when I am bored. I also record movies on my tv so I can watch them later when I am bored. LOL As you can see, I have tons of time on my hands, I"m disabled and no longer work, and there are no places to volunteer here nearby. It gets old really quickly everyday, thanks Tommi. I will check into it. maybe they will have some free games i can afford to play. Thanks again.