Dis Breast Cancer Survivors - GAGWTA!

[snappy]

Glad all went well, Susan.

We seem to be on the same schedule, mammos in June, etc.

One thing about the diagnostic mammo that I did no realize before my first one last year after surgery, the radiologist looks at it right away, so you know if all is well. At least that is how it was for me and I posted it on here, and others had the same experience. So you might want to ask if that is the case on the front end. It took a while for the tech to come back and give me the ok as well as the ok to dress. The wait was agony. So ask about it.

About the internist thing, I started going to one when we moved here in 1999 because I was looking for an endicrinologist. In New Orleans I was seen by a endicrinologist for many years). My GYN here referred me to my current endicrinologist doc, and mentioned the upside was that he was an internist as well. He is not very chatty or personable, but I think he knows his stuff. The wierd thing is his kids are or were at the same K-8 school as mine. We just don't chat though. He reads bone density tests as well as ultrasounds on my thyroid nodule. He also treats me for my high blood pressure and keeps an eye on my cholesterol and blood sugar when he does the blood work I need to monitor my thyroid levels. I like to deal with just him because it seems I am killing multiple birds with one stone (am I mixing my metaphors, sorry?). I had gestational diabetes with DD10 so I think it is good he monitors the blood sugar.

I do think we need to flag the tag fairy. We have a lot of new people on this thread. Anyone know a trick to catch her attention? New thread pointing out our needs here?

 

[laurabelle]

http://www.lisawillsurvive.com/
To All Our Family, Friends and Supporters,

I have not updated in quite some time. I have not had the energy and I have had so many different feelings and events going on. I just have not been able to do it. And this one is going to be short. When I can, I will update with all the things I want to say and all the things I know Lisa would want me to pass on.

Lisa came home today. We have started home hospice as of today. She is very confused and she has told me that she is ready to go. She is here at home now, surrounded by family, and I hope that she has the peace to know that I am ready, we are ready, for when She is ready to move on. My greatest prayer is that she be allowed to walk easily into the next life. As Lisa told me yesterday, Lisa must have a lot of important things planned for her. I have no doubt. She is and always will be a wonderful person.

I truly appreciate all the prayers and support. I will try to keep you posted the best I can.

All my love,
Bill

I just spoke with Lisa's friend Carolyn, and then I called Lisa's home. Her friend Sue answered and said Lisa was sleeping and Bill was resting. They're asking that visitors call first and come one or two at a time and only stay for about 10 min. The nurse is supposed to bring her morphine pump and set it up tonight. I am going to call in the morning and either go visit alone or with Carolyn.
I feel like I've been punched in the gut...

 

[MNSusan]

I'm so sorry to hear this.

 

[Pea-n-Me]

 

[NHAnn]

Oh Laura It is my prayer too that Lisa "walk easily into the next life".

 

[MinnieM3]

Laurie and Susan, glad your appointments went well! Looks like JUne will be a big month for the GAGWTA sistas with several mammo's and appointments, and I think I get my first scan since starting chemo. Whew!

I'm doing OK, but feeling worse this week OFF the Xeloda than when I was on. DH (pharmacist) says it's just starting to "gang up" so to speak after all the pills from last week. Oh well.

It was just disappointing as I thought this week would be easier. I'll figure it all out soon! LOL

 

[MinnieM3]

Oh I'm so sorry about Lisa. I'm just stunned and saddened. God bless her and her family. I know hospice will take gentle care of her.

 

[MerryPoppins]

Just remember that it's doing what it's supposed to do. Stay strong.

So sorry to hear the news about Lisa. She's fought a brave fight. I'll pray that things go easy for her in the coming days. And I'll pray for strength for her friends and family. I know this is heartbreaking for all of you.

My mom went to the doctor today and they confirmed she has some problems with her back. I think she's going next week to have a transforaminal epidural and nerve root block, whatever that means. Sounds like alphabet soup to me, but they say it will make her feel better.

I told someone on the community board to come see us. She's having a bit of a scare. She went for her baseline and got called back and back again. She's understandably worried so I told her to come here. She is a bit afraid that with the news about Lisa she might be intruding I think? I'm hoping she'll come so we can offer her some support.

 

[micki7337]

Hi Ladies!

It's been a couple of days since I've posted. I just feel like I've been having test after test. I thought today was it but now the doctor is calling for an MRI. I don't even know of what....I need to call the office. I'm just confused since I've had catscans and even the PET - what could the MRI tell them that they don't already know? Did anyone else have CATS, PET and MRIs? My DH says the message said something about not having had one before (which I haven't). They went right to a core biopsy from the first exam and then on to CATs and bone scan. Does an MRI tell them something that the other test don't? I'm just so tired of waiting - I need to get this started! I find myself 'losing' it more often even tho I'm trying to stay positive. I am just so scared. They are so many success stores but there are sad ones too. I know I need to join a support group and fast before I go nuts. I now realize that you had to have gone thru this personally to truly understand. Others can have compasion and emotions but it's the ones that have walked this path that can truly comfort. I thank God that I have a very dear friend who went thru this 2 years ago. She made it thru a very difficult treatment (only made it thru 3 cycles of chemo when treatment called for 6) and she is there every day as living proof. She has sat and cried with me when needed and laughed when I couldn't cry anymore. She went to my first appointment with the oncologist and asked questions and took notes. (DH was there but I couldn't rely on him to remember anything! Plus, he was more entertaining than serious.) Today she came to work with a satin sleep cap she picked up for me. It was a brand that she liked when she lost her hair. She also told me it's time to start looking for my wig and will take me to her wig lady. She has been such a blessing. I'm just afriad that this will take her down a memory lane that she would rather forget. But she assures me that she's okay with all this - she got thru it! Thank God for survivors!

Okay, I know I owe a few of you a story of my port installation. I had posted a comment that said how the surgeon taped my breast to my left knee. So here goes.....

Let me just preface this by saying I am a 42 DD. Before baby I was a nice 36 C but then nursing and the years got the best of me so here I am 7 years later and the puppies are big. I have laughed over the years that when I lie on my back, the puppies like to go to the beach - one to the Atlantic and the other to the Pacific (if you get my drift!) But on the day of surgery I walked into surgery and they asked me to climb onto the table - which looked to be about 15 inches wide. I guess I was so preoccupied with the limited width that I didn't realize that the table was slightly slanted. I don't know when the sedative started - time seemed to stand still. I wasn't asleep but it was an effort to open my eyes. I didn't even think to speak. At one point the surgeon was wiping my chest down with something cold and wet and I struggled to open my eyes. When I did all I could see was my breast in my face!!! And the surgeon is pulling the left one down to wipe the area and he pulls off two long pieces of surgical tape and puts them on my left breast and then pulls it tight before sticking it to my knee! I guess that was the first exposed skin under my hospital gown. I immediately thought 2 things - one, that if this was my DSIL she'd need more than 2 pieces of tape!! (she's like a 44 MM - humungous!) and that he wouldn't need tape if she straigtened out the table! My puppy would go to the beach!

So there you go....humor is such good medicine!


Before I go, Has anyone heard from Monique? I've been thinking of her.

 

[Pea-n-Me]

Micki, I wish I could offer you some answers. I've had many CTs and MRIs too. I never had a PET, however my understanding is that if they see something on PET they have to corroborate it with a CT anyway, so I guess my team just went straight to the CT. I think this is wise because from what they tell me the PET has a high rate of false positive since it can show things like infections and not just cancer. So - if they saw something on PET they would have to then go to CT.

ETA (was dreaming about this and realized I forgot to say): The one advantage a PET scan has is that it can pick things up (ie areas of metastases) early on when they are very small, whereas on CT an area would have to be about .5 cm before it would show (at least this is what I was recently told by my surgeon). The problem is that many areas can "light up" and would then need to be corroborated with CT and/or MRI (which may or may not show it).

As far as MRI, it may offer better views in certain areas. Did they see any suspicious areas on any of your tests that they now want to check further? Or are you having any pain or other symptoms anywhere that would make them want to look somewhere? There are so many areas you could have an MRI. I've had them on my head (for vertigo, before BC), my breasts and my abdomen.

Hang in there. You sound in good spirits in your post. If it's any consolation, I can completely relate to how you're feeling, I felt very similarly:

I find myself 'losing' it more often even tho I'm trying to stay positive. I am just so scared. They are so many success stores but there are sad ones too. I know I need to join a support group and fast before I go nuts. I now realize that you had to have gone thru this personally to truly understand.

Being positive is great, but sometimes it can be a burden, at least in my experience. If one more person told me to stay positive I would have You must allow yourself to go throught the grief process over the perceived loss of your health. Allow yourself to feel the fear, but don't dwell on it. Then you can learn ways to cope with that fear. Ignoring these overwhelming feelings does nothing to help you get through it.

I learned how to cope in my support center's meditation and journaling group, and with several private sessions with the nurse and social worker there who I am so grateful for. However, mainly it was a very lonely and isolating time for me, despite my having many supports in my life. I felt very much alone with these feelings, since most people did not want to hear me speak of anything but the "positive". I darn well knew the possibilities of my disease, and truly needed to come to terms with all of the possibilities before I could move forward. When I look back on my experience, this is what caused me the most pain, far more than any physical aspects of the disease.

There was a book I enjoyed called "Just Get Me Through This" which dealt with some of the emotional aspects of the disease. I suggest you definitely look into a support center, but also look into some complementary therapies such as meditation, relaxation, music therapies, journaling, Reiki, etc. I wasn't much into them before but they sure helped me when I needed them. I've been thinking lately about learning them myself to help others with them. I'm thinking about volunteering to run the meditation and journaling group at my center since the woman who previously did it left, but I'm kind of nervous about it. We'll see. PM me if you think I can help you sort out any of this, I'm rambling now and need to go to bed, LOL.

 

[Pea-n-Me]

GAGWTA!

I guess I shouldn't write about things like PET scans right before I go to bed if I don't want to dream about them, LOL.

I also had a dream about Lisa but I can't remember much of it yet. The thing that blows me away is the process that one must go through when coming to peace with what Lisa has had to come to peace with. I've seen it myself many times over the years with my patients as well, though most of them are not 32 yo and mothers of young children. Knowing how painful the process I went through just to accept my illness was, I can't imagine how it must feel to accept the fact that you are going to die. Lisa has done some amazing work and she must really be quite a woman. Her husband sounds pretty awesome as well. Many patients and families never come to such peaceful acceptance. The letter that Laura posted by Bill last night shows that they have gone through the process in an "ideal" way, and my guess would be that the reason for that is that they followed Lisa's lead. Once again, she must be a really amazing woman. Perhaps she saw it as better for her children? Lisa will continue to be in my thoughts and prayers today. Laura, please tell her husband that we have their family in our thoughts and prayers, and that Lisa will be remembered by many for the courage with which she fought this battle.

Laura, I also give you a lot of credit for your support of Lisa. You don't say much about it but it must be very hard for you to watch as well. I've very much had Lisa in my prayers, and I will definitely remember her, her battle, her husband, and most of all her children.

 

[snappy]

it would be impossible not to remember Lisa and her family, especially after seeing the pictures of her with her children, and the video all of which are on her website.

What a role model she is, not just for BC survivors, but everyone on this earth. I look at myself, I just don't see the strength she has in me. But knowing how she has lived her life does somehow make all of us stronger.

If you can, Laura, let them know we are with her in spirit. You have been a true friend to her, and I am sure your friendship was very important. I hope she knows that she has and will continue to touch many lives.

I am glad you let us know what is happening. It has to be so difficult, but you too are very strong. Thanks for sharing it so we can all lend our prayers.

 

[snappy]

Micki, I am sorry I only have had cat scans. My impression from reading the results was that the info gathered from reading them was rather limited. I think 'stuff' shows up, but the radiologist decides how 'likely' it is that there is something to follow up on. Not very reassuring to me, but I am not looking at it from a medical standpoint. To me, a biopsy is much more definitive.

I guess these diagnostic tests are just one weapon in the arsenal to fight BC.
I think the docs have the benefit of treating so many women and knowing what their symptoms, complaints, and prognosis was.

Even talking to my niece (med school grad this May) this week, telling her of my aches and pains, it was amazing how she put them into perspective after asking me a few questions. It helped me to dispell fear, even though I still talked to my doc Wednesday about the same stuff.

Fear can be an enemy but also a friend if you channel it into making sure you keep appointments, voice concerns, etc. Her mom avoided doctors, worried about the costs of tests (self-employed). She really should have sought medical help much earlier. Her cancer was longstanding-Katrina delayed things a bit, but if sh had been having routine physicals every year (she was 48), her cancer would have been more treatable.

Merry, my sister has lived with severeback problems for years. She had fusion surgery about 4 years ago. She has had a number of epidurals for pain control. I am not sure if it is the same kind of epidural that your mother will have. It is administered by a "pain doc". The epidurals really help her cope but she still takes strong drugs. She recently has fnally gotten off of morphine, via the use of another drug that has been helping her. There are many things she has to avoid doing because it brings on pain that even morphine does not handle. She is only 48. She is considered permanently disabled.

 

[MinnieM3]

Been thinking about Lisa so much! Thanks Laura for keeping us up to date.

Maybe I shouldn't ask this, but I'm curious.... Am I the only one here with Stage IV at the point? Sometime I lose track of where everyone is and what everyone has been through.

If I am, does anyone know anyone else who's in Stage IV or have a positive tale of a Stage IV still living years and years.

When I can't sleep at night, thoughts of my immenent demise start to get to me and I get to wondering if I'm just kidding myself that I have a long, long life ahead of me.

Sorry to be a downer today. Having a tough week with sleep/lack thereof. And I tried to clean out Kevin's toychest and room in general yesterday and you would have thought I ran a marathon. I was beyond exhausted. Felt SOOOO worthless!

Ok pity party over... thanks!!
Beth

 

[snappy]

My brother in law (my sister's husband) has a first cousin who has been stage IV for a long time (more than 8 years). She has had chemo several times, is actually going on another round now. I do not know a lot about her story, although I have eaten meals with her a number of times. She was diagnosed around age 40, just after she had a miscarriage for the baby she and her husband had been trying to have for years. I believe hers had spread to the lymph nodes in her neck before she was diagnosed. My sister is very close to her, I think she tells Joan things she finds hard to share with her husband and sister.

She has certainly had ups and downs, and experienced depression. She has been able to work throughout (she works for the federal gov't). One of the chemo drugs did affect her eyesight, but she has not let her beat her. Over the years she has made many friends where she gets treatment. Everyone adores her. She is a beautiful person, inside and out. Her relay for Life team
raised the most money last year. This year the whole affair in their neck of the woods has been toned down. I think it is because many have family affected by the hurricanes. I will be participating in it again this year. We are hoping for good weather (it's on May 6th), not the storms last spring.

Anyone else know Stage IV stories?

 

[Pea-n-Me]

Beth - please do not apologize. You are not a downer!! Heavens, woman, you have a lot on your plate right now, of course you'll be thinking about these things!

On this thread, donnabres (donna) was diagnosed as Stage 4 I believe, and Tiger Fan (Lisa) has been Stage 4 for quite a while. Laura has a lot of Stage 4 friends. Shugardrawers has recurrent peritoneal cancer (not sure if it's stage 4, but she was given dire odds - a 100% mortality rate if I recall) and she is doing well!

I have a good friend in her early 50's who was diagnosed with Stage 4 lung cancer back in 2002, never smoked. She has mets to her brain. They have controlled her lung cancer with aressa (?sp) and for her brain she has occasional radiation. To look at her you would not know she has cancer. Her spirit is incredible.

My good friend's mother is Stage 4 colon cancer, mets to her lungs. She had two surgeries to remove the lung tumors, had a bit more chemo, and is doing great. She is another person with an incredible spirit.

One of my BC friends has another BC friend who has been Stage 4 for 17 years.

Lance Armstrong is Stage 4 - primary testicular cancer (or was it prostate ) with mets to his lungs and brain. He certainly is an inspiration to all of us.

My kids' teacher has a sister who was diagnosed with Stage 4 BC when she was in her early 20's. She is now in her late 30's and even had 3 children in the time since diagnosis. When I was first diagnosed that was the story that I hung onto.

Beth, believe you will survive this. It's ok to think about all the possibilites, but after you do that, tell yourself that YOU will be one of the survivors. Someone survives, why woudn't it be you? You have a lot to live for! So go on believing that you will be a SURVIVOR!!

 

[snappy]

I don't know about the rest of you but these stories are giving me a lift today.

Thanks for posting all of yours, Linda.

So glad you asked about it, Beth. It is what makes us sistas.

 

[Pea-n-Me]

Yes, Laurie. I am so glad Beth felt comfortable posting how she's been feeling. We're here to listen anytime Beth!!

 

[NHAnn]

I have so much I want to say after reading these last posts...but am having a hard time finding the words. You all mean ever so much to me, in so many ways, and I'm so grateful for this info/support/friendship....and the honest expression of ALL the emotions and feelings.

Beth....as Linda says, "believe"!!

Thninking of you with GAGWTA!!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Beth I wanted you to know that yes, I have lots of sistas who are stage IV. Again, most of them dxed at a later stage from the start becuase they were too young to get bc and pushed aside. One who recently joined my online and in-person support groups was dxed at age 21. She's making plans to be here a long time, I think that's one key.

I've gotta tell you, my stage IV sistas are the best, most positive people I know. I love them and wouldn't have it any other way. Yeah, it's hard, it sucks, but I think, if that were me, I would hate it if everyone was afraid of me and disappeared...

I had a really good visit with Lisa. She was awake and alert. She got a little confused when she was telling me a story about Bill and then she said, that doesn't make sense does it, and we laughed...we cried together too. She was having some back pain and a headache. She has good home health nursing care, she gave Lisa a back rub and I rubbed her head. She wanted to make sure I posted to everyone. I told her and her family you all are keeping them in your thoughts and prayers. I had a good talk with Bill too. I told him at the end of the conversation that I was glad they got to go to Disney. He noticed the Tink pin on my jacket and said he was sorry the kids were in preschool, that Katie would love to see me and my pin since Tink is her very favorite. I, of course, immediately gave it to him and told him I was sorry I didn't have another pin with me for Andrew and he said normally he wouldn't take something like that from me, but it would be so special to Katie and he would give it to her privately. (I'm going to look through my other pins and find something for Andrew too!) Bill's at peace with it all. I'm sure that's why Lisa feels free to go now.

Here's an update from her site:
Greetings to all Friends, Family and Supporters,

As all of you are aware, Lisa is now home to be with her children and
her family as we begin hospice. Your Love and Concern is very
important to me, the family and most importantly to Lisa. It goes
without saying that Lisa continues to be a fighter and at times brings
much laughter and joy into a sometimes tough situation. It is our
primary focus to give Lisa all that she needs and at times this may be
just to rest.

Please understand that you are welcome to visit me, the kids and Lisa,
however as we work towards balancing Lisa's needs and family time, we
ask that you would visit only between 11am and 1pm for 10 minutes.
Since Lisa can become easily confused or overwhelmed we feel that 2
visitors at a time would make the most of her time with those visiting.

In regards to coming to see me, there are often times that I am simply
sitting beside Lisa or hanging out watching television after the kids
have gone to bed. A game of pool or simple conversation during these
quiet times are often welcomed and appreciated.

We appreciate the great outpouring of concern and know that this
continues to provide us all with much strength. With all that Lisa
faces each day please consider instead of phone calls, sending cards
and e-mails that we can read together. Since our focus is to give Lisa
all that she needs, the telephone calls can at times be overwhelming
and draw us away from quality time or her medical needs.

I am always trying to create and save all the memories that I have of
Lisa. In your e-mails and cards, I would especially love to hear of a
fond memory that you have of Lisa. This can be a simple phrase that or
funny story that reflects your relationship with Lisa. This would mean
so much to me and also to our children in the years to come. Lisa's
Memory will always survive and I would like to make certain that I
have captured as many memories as I can. If possible, when sending a
memory via internet, please post it to the site or to my e-mail
(bill@lisawillsurvive.com).

I will do my best to communicate to you through the website, e-mail or
through our network of supporters. Thank you all for your
encouragement, your support and most of all your love which gives Lisa
and our family the strength to go through each day.

Much Love,
Bill