Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

Laurabelle.. where is Windsor Hills?

It's a fairly new resort community of condos, townhouses and single homes off of 192, very close to the parks. I've read a lot of people here on the Disboards and on Tourguide Mike rent and have been happy there. You can rent directly from owners for a specific property or go through an online booking agency like hotelopia and get placed wherever they have availability. I made inquiries on http://www.windsorhillsrent.com/ first, but no one could be hotelopia's price!

 

[jackskellingtonsgirl]

Laura - I think a huge part of determining a course of treatment for my mom will be what is in her uterus. If any of that is cancerous then we will have a whole new (bad) ballgame. If the uterine issues are benign stuff that can be dealt with later then we're back on track. I think they already told her she won't have to do chemo IF her lymph nodes are clear, but that only applies if there aren't other areas involved. I am still peeved about them not including her uterus in the CT scan.

I hope your Dr. is successful in getting SOMETHING else approved for you! The steroids are obviously not an acceptable solution. Any chance you might have whatever ailment the drug is designed to treat? Isn't being off label their issue? Maybe your Dr. should diagnose you with something other than UC!

Your condo sounds awesome! Enjoy your trip planning!

 

[laurabelle]

Laura - I think a huge part of determining a course of treatment for my mom will be what is in her uterus. If any of that is cancerous then we will have a whole new (bad) ballgame. If the uterine issues are benign stuff that can be dealt with later then we're back on track. I think they already told her she won't have to do chemo IF her lymph nodes are clear, but that only applies if there aren't other areas involved. I am still peeved about them not including her uterus in the CT scan.

I hope your Dr. is successful in getting SOMETHING else approved for you! The steroids are obviously not an acceptable solution. Any chance you might have whatever ailment the drug is designed to treat? Isn't being off label their issue? Maybe your Dr. should diagnose you with something other than UC!

Your condo sounds awesome! Enjoy your trip planning!

I hope and pray those will be B9 issues for your mom too!

If I was officially dxed with Crohn's disease instead of Ulcerative Colitis I would be able to take this drug...but that's not the case. I don't have Rheumatoid Arthritis either, dang! My dumb luck for having the wrong autoimmune disease.

 

[MerryPoppins]

Don't feel guilty about the Disney trip. You need to also take care of yourself and your family. A quick break will leave you refreshed and ready to help your mom. I'm sure she wants you to continue with your plans.

Merry, sorry about your friend and doctor. It sounds like you lost a very close relative more than a friend.

Yes. He was more like family than a friend. My parents have belonged to a group of friends for many, many years. They all go out to dinner once a month (at least). Doc was one of their friends from that group. He was a buddy of my dad's (who has been gone for almost 20 years). About the time my dad died, he and his wife divorced and he left the dinner group so she could remain active, but my parents still remained his dear friend. I'm wondering if part of the reason this hurts so bad is that he always reminded me of my own dad, so his hugs meant so much to me. I'm thrilled that I got to work with him as an adult and that my family got to know him in a deeper way through Scouts than they ever would have as just their doctor. I think both my kids saw him as a mentor and a sort of grandfather figure. With my dad gone (and DH's father a stroke victim that can't walk or talk) they don't really have a grandfather that they can interact with in the usual way. I treasure the fact that he was so proud of the adults they are becoming. He'll be missed for all the good he did in this community. So sad.

I am feeling better. I still cry every once in a while when I remember something, but I'm getting used to the idea of him being gone. Sometimes love hurts, you know? I'll be glad Thursday when the funeral is over and we sort of have closure. But I'm still nervous about having to change doctors.

I have also had the fears of recurrence and even of getting mammograms. I think that feeling never completely goes away. Part of me is filled with fear that my beloved Doc isn't there to give advice in case something happens and I get sick. I suppose if I had to have chemo, I'd be afraid of that too.

But I also know that we can't live our lives in fear. Fear is crippling. Much better to be watchful and aware, but live your life laughing. It's much healthier and much more fun. Try to relax as much as possible and realize that all the worry in the world isn't going to change the outcome. What's going to happen is going to happen. So I say choose good doctors you trust, do some research, do what your doctors say (after discussing what you've learned), be watchful, take good care of yourself and then enjoy life. Each day is a gift. Tell those around you that you love them and you're proud of them. Enjoy the little things like sunsets and flowers. Any of us could die tomorrow. I'd rather live my last day enjoying life and loving others than paralyzed with fear.

Man, I'm sounding preachy today. GAGWTA!

 

[jackskellingtonsgirl]

I hope and pray those will be B9 issues for your mom too!

If I was officially dxed with Crohn's disease instead of Ulcerative Colitis I would be able to take this drug...but that's not the case. I don't have Rheumatoid Arthritis either, dang! My dumb luck for having the wrong autoimmune disease.

I thought I saw a commercial for Humira for RA. Hmm.
Is the Dr. SURE you have UC? Because it sure sounds like Crohn's. Doesn't your Dr. want to rethink his diagnosis? I know with DH the gave him a UC diagnosis but they aren't 100% certain which one it is. They tried to have him do the barium thing after they did his first colonoscopy but they just managed to make him HORRIBLY sick, so they never did really determine one vs. the other.

I think if I was the Dr. I would run some additional tests and reconsider my initial diagnosis.

 

[laurabelle]

He wouldn't have wanted his friends to sit around and mourn, so I'm going to try to laugh. He absolutely loved to laugh.

This really spoke to me...

jackskellingtonsgirl- I agree, you should not feel guilty about your trip!
I had the Prometheus blood testing done a few years ago and I have UC, plus all my symptoms seem to agree with this dx and not Crohn's though my GI doc says it's not ever 100%. Sometimes they will find that even after the colectomy, the symptoms reappear, so then the dx changes to Crohn's disease.

 

[jackskellingtonsgirl]

I am feeling better. I still cry every once in a while when I remember something, but I'm getting used to the idea of him being gone. Sometimes love hurts, you know? I'll be glad Thursday when the funeral is over and we sort of have closure. But I'm still nervous about having to change doctors.

Don't feel guilty about the Disney trip. You need to also take care of yourself and your family. A quick break will leave you refreshed and ready to help your mom. I'm sure she wants you to continue with your plans.

But I also know that we can't live our lives in fear. Fear is crippling. Much better to be watchful and aware, but live your life laughing. It's much healthier and much more fun. Try to relax as much as possible and realize that all the worry in the world isn't going to change the outcome. What's going to happen is going to happen. So I say choose good doctors you trust, do some research, do what your doctors say (after discussing what you've learned), be watchful, take good care of yourself and then enjoy life. Each day is a gift. Tell those around you that you love them and you're proud of them. Enjoy the little things like sunsets and flowers. Any of us could die tomorrow. I'd rather live my last day enjoying life and loving others than paralyzed with fear.

Man, I'm sounding preachy today. GAGWTA!

Not preachy in the least! In fact, I think your statement above is one of the most profound things I have ever heard. I might have to have it tattooed on some highly visible part of my body! You are right, of course. No matter how much I worry about something I can't alter the outcome.

I am glad you are feeling a bit better. I am sure you will always miss Doc.

My mom doesn't want us to change our plans. If the results of things between now and then are favorable then we will definitely take the trip as planned - all 16 nights.
I think part of the guilt is that I am spending so much on this trip when my mom is having trouble managing her finances. But that problem is because she refuses to tell my 16 year old sister "NO". Mom allows my sister to dictate how their money is spent and no amount of arguing will convince my mother that she is making a HORRIBLE mistake. Since Mom flatly refuses to do things in a logical fashion I have to learn to bite my tongue and let her do what she wants. That's what my doctor told me to do. So much easier said than done!

Someone on another thread suggested sending Mom a monthly gift card that she can use for groceries and prescriptions, which I think I will do. I know if I send her cash she will immediately blow through it taking my sister out for fast food or other frivolous stuff, which is why her money is so tight now.

 

[jackskellingtonsgirl]

This really spoke to me...

jackskellingtonsgirl- I agree, you should not feel guilty about your trip!
I had the Prometheus blood testing done a few years ago and I have UC, plus all my symptoms seem to agree with this dx and not Crohn's though my GI doc says it's not ever 100%. Sometimes they will find that even after the colectomy, the symptoms reappear, so then the dx changes to Crohn's disease.

I think if the insurance company is going to be idiotic about covering your treatment that the Dr. should change your diagnosis, regardless of what he actually thinks you have!
There just has to be some way to get the med you need without paying trillions of dollars for it.

 

[need_a_Disney_fix]

I would like to thank all of you for your thoughts and prayers. Mom's breast lesion became very infected because she was trying to treat it herself. This was the beginning of the end I guess. She was not feeling well at all this past month and was placed on antibiotics because of her infection. She then had her Taxotere treatment and that really hastened this process. Mom then came down with pneumonia and that is when she entered the hospital. The downward spiral kept going like the energizer bunny. She was placed in ICU to be placed on a respirator. Somewhere in all of this her bowel perforated. THAT is when we met with her medical team and the decision was made to remove life support. Mom passed 70 minutes later. She is now no longer feeling punk and has that sparkle in her eyes that had been lost towards the end. I love you, Mom, and I will meet you at Heaven's Door.

 

[Sha]

I would like to thank all of you for your thoughts and prayers. Mom's breast lesion became very infected because she was trying to treat it herself. This was the beginning of the end I guess. She was not feeling well at all this past month and was placed on antibiotics because of her infection. She then had her Taxotere treatment and that really hastened this process. Mom then came down with pneumonia and that is when she entered the hospital. The downward spiral kept going like the energizer bunny. She was placed in ICU to be placed on a respirator. Somewhere in all of this her bowel perforated. THAT is when we met with her medical team and the decision was made to remove life support. Mom passed 70 minutes later. She is now no longer feeling punk and has that sparkle in her eyes that had been lost towards the end. I love you, Mom, and I will meet you at Heaven's Door.

Need a Disney fix.... got me in tears here. And you are right, she has that sparkle back and not feeling bad anymore

 

[laurabelle]

I would like to thank all of you for your thoughts and prayers. Mom's breast lesion became very infected because she was trying to treat it herself. This was the beginning of the end I guess. She was not feeling well at all this past month and was placed on antibiotics because of her infection. She then had her Taxotere treatment and that really hastened this process. Mom then came down with pneumonia and that is when she entered the hospital. The downward spiral kept going like the energizer bunny. She was placed in ICU to be placed on a respirator. Somewhere in all of this her bowel perforated. THAT is when we met with her medical team and the decision was made to remove life support. Mom passed 70 minutes later. She is now no longer feeling punk and has that sparkle in her eyes that had been lost towards the end. I love you, Mom, and I will meet you at Heaven's Door.

I'm grateful for your mom's legacy...she obviously did a good job raising you! Yes, I bet she's dazzling in her new healthy cancer-free body!
Any news on the babies?

 

[snappy]

Very special and touching post, need a Disney fix.

What a beautiful tribute to your mom!!

Merry, your posts speak volumes as well. REading this thread lately has been personally very rewarding, despite the bad news. Thank you ladies for posting so openly.

 

[lookingforward]

We have had to deal with some really sad news over the past week or two, here on the GAGWTA. I guess is just proves that we can't plan our illness or ending...its really in God's hands. I am still fearing reoccurance but hearing from the longer term survivors as well as those still in treatment (like me) helps. I am beginning radiation the second week of May....its a gray area but most of my doctors are encouraging me with the "Your so young..." conversations.

The end of treatment is a big change....like when they told me I won't have to see my Oncologist till JUne....I almost started to cry. How could she live without ME? HA! But I have to keep the faith that my recovery will continue and also carefully monitor my body. Scary but glad to be done with chemo!

Violetshelby...hang in there! I hope your bone scan was great. Weird...my back started hurting too. One day after chemo was over.

 

[jackskellingtonsgirl]

GAGWTA!

My mom saw the OB/GYN today. They did a biopsy on the thickened area of the uterine wall, and removed a large polyp for biopsy, too. So now we wait. She can't remember when the Dr. said the biopsy results will be back - sometime next week, she thinks.

The waiting is going to drive me batty. I just wish we had all of the information so the oncologist could start putting together a treatment plan.

 

[lookingforward]

Hi everyone~ I am headed back to work today after my last chemo recovery. I am starting radiation on May 12th...the day I return from my celebrate the end of chemo WDW visit.

Violetshelby...are you doing okay? I'm thinking about you.

DeeCeeSW...I'm thinking about YOU too! What exact day is your surgery? Are you doing okay? Hang in there....

GAGWTA!

 

[snappy]

Glad you are recovered enough from the last chemo to work today, lookingforward. I love the idea of your celebrate end of chemo WDW visit. Best way I know of to celebrate.

Good wishes to the rest of you in treatment and beyond.

I am taking the day off from work today. Lots to deal with. Trying to count my blessings.

Laurie

 

[laurabelle]

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

lookingforward- I hope today goes well for you... Your trip must be right around the corner!

jackskellingtonsgirl- I'm glad your mom has one more test crossed off her list! I agree, the waiting is the one of the hardest parts! I hope you can find a fun distraction in the meantime.

Laurie- I hope your day is a peaceful one sista...you sound like you have a lot on your plate.

I still know zero about the insurance appeal. Last night I decided, life's too short (ok, that's not a new revelation, but more of a reminder! ) and since I am not in the hospital, and regardless of the outcome, whether I get the drug or the surgery, I am not planning on being in the hospital this time next week...so I'm going on my SIS Meet to Vegas!!!!!!!
I rebooked my flight last night, called my roomies, we were crying happy tears! I am keeping it a surprise from everyone else, just in case I have to cancel last minute, but I'm not expecting to! So now I'm happily making my packing list...yeah, happy distractions are good!

 

[jackskellingtonsgirl]

lookingforward - I hope you have a great day at work! (If there is such a thing. )

Snappy - I hope you are able to enjoy your day off!

Laura - Good for you!! I hope you have a wonderful trip!

 

[snappy]

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

lookingforward- I hope today goes well for you... Your trip must be right around the corner!

jackskellingtonsgirl- I'm glad your mom has one more test crossed off her list! I agree, the waiting is the one of the hardest parts! I hope you can find a fun distraction in the meantime.

Laurie- I hope your day is a peaceful one sista...you sound like you have a lot on your plate.

I still know zero about the insurance appeal. Last night I decided, life's too short (ok, that's not a new revelation, but more of a reminder! ) and since I am not in the hospital, and regardless of the outcome, whether I get the drug or the surgery, I am not planning on being in the hospital this time next week...so I'm going on my SIS Meet to Vegas!!!!!!!
I rebooked my flight last night, called my roomies, we were crying happy tears! I am keeping it a surprise from everyone else, just in case I have to cancel last minute, but I'm not expecting to! So now I'm happily making my packing list...yeah, happy distractions are good!

This is definitely the best news I have heard all week!! I am really glad this is going to happen.

Thanks for well wishes. The issue on our plate turned out to be bad but not as bad as I feared. I am not ready to talk about it though. Just too worn out.

I usre perked up when I read our post, Laura. thanks for sharing your good news with us.

 

[Sha]

Greatings to all of you!!! Hope today has shown many things to make you smile. I just want to say that you all (again) that you are remarkable and my heros!

Laurabelle... HAVE AN AWESOME trip! I love that its a surprise for the rest of them.

Need another Disney Fix, Merry Poppins and many others, still hugs and prayers for you all!