Fighter's Daughter - Introduction

wonderingalice

Hello everyone,

I've been following this board for a while - your stories are so inspirational and your strength amazes me.

My mother (age 57) was diagnosed with Stage III uterine papillary serous carcinoma in July 2008. As you may know this cancer acts similarly to OVCA and shares many of its treatment protocols. She had a hysterectomy/oopherectomy, internal/external radiation and a course of chemotherapy (Carbo/Taxol), which she finished in March 2009. In December 2009 a recurrence was found - a tumor attached to the upper portion of her bladder. Surgery was scheduled for January 26th but she become emergent with a bowel obstruction and was rushed on a med-flight to the hospital and had surgery January 22nd. They removed the fist-sized tumor and did an 8" bowel resection. Her CT scan one month after surgery revealed more new growth. At first the oncologist was reluctant to put her back on chemo because of bladder impingement and associated UTI. They tried a ureteral stent and put her on Arimidex. This did not offer much relief and they've now decided to pull out the big guns and go ahead with chemo: Ixempra and Avastin. Ixempra is used in the treatment of breast cancer and it's fairly new in the uterine treatment range. We are hoping beyond hope that this knocks the beast for a loop.

Unfortunately my mom's CA125 levels are not a reliable marker for her - they've been in the "normal" range throughout the battle.

It's so difficult to see someone fighting this. My mom has lived a very healthy life - she is physically fit, doesn't smoke or drink. The only cancer in our family is environmental - my maternal grandfather died of metastasized prostrate cancer after retiring from a nuclear weapons plant.

I have ups and downs of feeling like she's going to beat it, and imagining the worst. I'm sure that's normal. I'm an only child so sometimes it feels like I'm dealing with this alone. Nobody really knows what to do or say.

I look to these boards daily for hope and helping hands. Thank you for listening.

~Al.

leesag

Alice
My heart goes out to you. My own daughter is also an only child and 20 years old. She's not talking much about this to me or her stepfather and I worry that, like you, she doesn't have anyone else she feels like she can talk to. I can't speak for your mom, but I wish my daughter would open up to me the way you have on this board. I have asked her not to be afraid to share her feelings, all of them, with me, because that's what moms do, we listen and love. So far, she's only been very positive with me. When I'm feeling down, I remember something she told me in the very beginning: "I know you'll be fine, because you're the strongest person I know." Words for me to LIVE up to!

As for your ups and downs, yes that's perfectly normal. I have them on a daily basis! But remember that your mom has a lot going for her, she's physically fit, and she has you. Don't underestimate the power of love and positive thinking!

Finally, remember that the social worker at your mom's cancer center is there for whole family support, not just for your mom. If you call them, they can point you in the direction of support groups for family members--that could be a safe place where you can share all of your fears, as well as, find some hope.

My thoughts and prayers are with you and your family.

Extra Hugs!

Leesa

(Oh and don't let the profile picture throw you for a loop! The story behind the hair is in the thread "Mohawk for a Minute!")

wonderingalice

leesag said:

Alice
My heart goes out to you. My own daughter is also an only child and 20 years old. She's not talking much about this to me or her stepfather and I worry that, like you, she doesn't have anyone else she feels like she can talk to. I can't speak for your mom, but I wish my daughter would open up to me the way you have on this board. I have asked her not to be afraid to share her feelings, all of them, with me, because that's what moms do, we listen and love. So far, she's only been very positive with me. When I'm feeling down, I remember something she told me in the very beginning: "I know you'll be fine, because you're the strongest person I know." Words for me to LIVE up to!

As for your ups and downs, yes that's perfectly normal. I have them on a daily basis! But remember that your mom has a lot going for her, she's physically fit, and she has you. Don't underestimate the power of love and positive thinking!

Finally, remember that the social worker at your mom's cancer center is there for whole family support, not just for your mom. If you call them, they can point you in the direction of support groups for family members--that could be a safe place where you can share all of your fears, as well as, find some hope.

My thoughts and prayers are with you and your family.

Extra Hugs!

Leesa

(Oh and don't let the profile picture throw you for a loop! The story behind the hair is in the thread "Mohawk for a Minute!")

Leesa
Thank you so much for your response. I feel like we should have that "heart to heart" but I try to remain positive and upbeat around her. I would say the same thing your daughter did about my mom being the strongest person I know. She told me the worst part about having cancer is seeing me worry.

I'm not seeing your mohawk picture but I want to! I read the story

I have started seeing a counselor through my employee assistance program at work. We've had one session so far and I think it has helped.

One of the hardest parts is being farther away from my mom than I would like. We live about 7 hours apart in Colorado. Unpredictable winter weather has made visits challenging, but we are planning to see each other next weekend, barring a spring storm. We're hoping she'll feel well enough to meet at a cabin for the weekend, if not I will make the full trip. Either way, I know that spending time together will do wonders.

Hugs back.

EDIT - I must also add after reading another post from you, that my mom was also a teacher, she retired in 2007. She taught ESL and a supplemental class for high-risk kids, and changed a lot of lives. Her students adored her and many I think would not have stayed in school or continued on to college without her support.

~ Al.

leesag

wonderingalice said:

Leesa
Thank you so much for your response. I feel like we should have that "heart to heart" but I try to remain positive and upbeat around her. I would say the same thing your daughter did about my mom being the strongest person I know. She told me the worst part about having cancer is seeing me worry.

I'm not seeing your mohawk picture but I want to! I read the story

I have started seeing a counselor through my employee assistance program at work. We've had one session so far and I think it has helped.

One of the hardest parts is being farther away from my mom than I would like. We live about 7 hours apart in Colorado. Unpredictable winter weather has made visits challenging, but we are planning to see each other next weekend, barring a spring storm. We're hoping she'll feel well enough to meet at a cabin for the weekend, if not I will make the full trip. Either way, I know that spending time together will do wonders.

Hugs back.

EDIT - I must also add after reading another post from you, that my mom was also a teacher, she retired in 2007. She taught ESL and a supplemental class for high-risk kids, and changed a lot of lives. Her students adored her and many I think would not have stayed in school or continued on to college without her support.

~ Al.

Another Coincidence
My daughter's name is Alyssa. Perhaps your mother and I should get together sometime!



Leesa

Hissy_Fitz

wonderingalice said:

Leesa
Thank you so much for your response. I feel like we should have that "heart to heart" but I try to remain positive and upbeat around her. I would say the same thing your daughter did about my mom being the strongest person I know. She told me the worst part about having cancer is seeing me worry.

I'm not seeing your mohawk picture but I want to! I read the story

I have started seeing a counselor through my employee assistance program at work. We've had one session so far and I think it has helped.

One of the hardest parts is being farther away from my mom than I would like. We live about 7 hours apart in Colorado. Unpredictable winter weather has made visits challenging, but we are planning to see each other next weekend, barring a spring storm. We're hoping she'll feel well enough to meet at a cabin for the weekend, if not I will make the full trip. Either way, I know that spending time together will do wonders.

Hugs back.

EDIT - I must also add after reading another post from you, that my mom was also a teacher, she retired in 2007. She taught ESL and a supplemental class for high-risk kids, and changed a lot of lives. Her students adored her and many I think would not have stayed in school or continued on to college without her support.

~ Al.

It's hard, Alice......
My only daughter (I also have 3 sons) is my youngest, and the one that depends on me for everything. She is divorced (a good thing....he was an abusive husband and father and she stayed with him far too long), with 3 children. And her stress level was already out of sight when I was diagnosed. Now it's off the charts completely. We can't talk about the possibility (the eventuality, really, for everyone) of my dying. She cries....I cry; it turns into a whole-box-of-tissue fiasco.

One of my granddaughters, whom I am very, very close to (she lived with us for years), is the same way. Recently, we had one of those nights and when I said, "Please don't cry, sweetheart," she replied, "I can't help it. It just makes me so sad." And it does. It makes all of us sad. But we can rejoice in each day we have together, even if we aren't literally "together". A daily phone call or text message counts. And any kind of get-away is special, but especially now. I took my daughter to Mexico for 4 days over Spring Break. It was great girl time.

wonderingalice

Hissy_Fitz said:

It's hard, Alice......
My only daughter (I also have 3 sons) is my youngest, and the one that depends on me for everything. She is divorced (a good thing....he was an abusive husband and father and she stayed with him far too long), with 3 children. And her stress level was already out of sight when I was diagnosed. Now it's off the charts completely. We can't talk about the possibility (the eventuality, really, for everyone) of my dying. She cries....I cry; it turns into a whole-box-of-tissue fiasco.

One of my granddaughters, whom I am very, very close to (she lived with us for years), is the same way. Recently, we had one of those nights and when I said, "Please don't cry, sweetheart," she replied, "I can't help it. It just makes me so sad." And it does. It makes all of us sad. But we can rejoice in each day we have together, even if we aren't literally "together". A daily phone call or text message counts. And any kind of get-away is special, but especially now. I took my daughter to Mexico for 4 days over Spring Break. It was great girl time.

Thank You
Thank you for your response.

I agree that it's an almost impossible conversation to have. My dad and I both broke down in tears on the phone last week. We don't normally talk on the phone and we just couldn't take the unspoken gravity of the situation.

It's a rare day that my mom and I don't email or talk on the phone. Yesterday I got a snow day from work and we got to talk for a blissful 40 minutes in the afternoon.

The time together will get us through.

BonnieR

Welcome
Dear Alice,

Thank you for sharing your's and your mom's ovca journey. Sending you lots of

Hugs ♥ Prayers ♥ H♥PE

Bonnie

marleyboo2

BonnieR said:

Welcome
Dear Alice,

Thank you for sharing your's and your mom's ovca journey. Sending you lots of

Hugs ♥ Prayers ♥ H♥PE

Bonnie

What if...
I have two grown daughters and a husband of thirty years. I wanted so badly to talk about the what ifs.... what if I don't make it..what if...I can't take any more treatments. No one in my family would talk to me because they felt like they were giving me permission not to make it...which to be honest I needed because I felt I was letting everyone down by being so sick. So I became the caretaker of the family sick as I was. I have no answer for you but only to tell you that it was very important to me that I be able to talk about the evntuality of it all and me be the one in tears but it never happened. Now, it is 5 1/2 years later and I still wish that they would talk to me but NEVER do they mention it like it never happened. I just felt that I needed to share my experience and my wishes but they were mine and each and every person is different. Just remember she did not ask for this and she wants to be brave but sometimes she can't be and you need to let that be ok. I wish you the very best and your mom too. Prayers for you and your mom.

minky1225

wonderingalice said:

Leesa
Thank you so much for your response. I feel like we should have that "heart to heart" but I try to remain positive and upbeat around her. I would say the same thing your daughter did about my mom being the strongest person I know. She told me the worst part about having cancer is seeing me worry.

I'm not seeing your mohawk picture but I want to! I read the story

I have started seeing a counselor through my employee assistance program at work. We've had one session so far and I think it has helped.

One of the hardest parts is being farther away from my mom than I would like. We live about 7 hours apart in Colorado. Unpredictable winter weather has made visits challenging, but we are planning to see each other next weekend, barring a spring storm. We're hoping she'll feel well enough to meet at a cabin for the weekend, if not I will make the full trip. Either way, I know that spending time together will do wonders.

Hugs back.

EDIT - I must also add after reading another post from you, that my mom was also a teacher, she retired in 2007. She taught ESL and a supplemental class for high-risk kids, and changed a lot of lives. Her students adored her and many I think would not have stayed in school or continued on to college without her support.

~ Al.

I completely understand what you're going through
You are definitely not alone. Especially since you joined us here. My Mom has stage IV OVCA. She was diagnosed in January and has been in the hospital ever since for one complication or another. Every day is a constant emotional roller coaster.

I am so sorry that you have to go through this and I do know how tough it can be...I will not tell you that it becomes easier, but it does become more tolerable to deal with. Of course, there will be days where the weight on your shoulders is unbearable. I often find myself feeling alone too, even with 3 other siblings. We are all pretty close but are dealing with Mom's illness in different ways. It's funny how every person is so different under stress.

I wonder how my Mom's kids are all a wreck through this and she is the calm one...even though she is the one with the illness. I am blessed to have such a strong Mom, and it sounds like you are too!

Please come here often and post updates, concerns, or anything you feel. These women on this board are absolutely superb, which I'm sure you can see.

Big hugs and prayers,
Allison

Lisa13Q

Dear Alice
Welcome to the Board...sorry you have to be here, but it is a special place. My mother was diagnosed in July 2009 with stage IIIc. She had major debulking and chemo. Was hospitalized quite a bit throughout it all. It was a challenge. It took awhile to get used to the "new normal". Now we can both talk about her cancer, and her illness and her possible recurrence and all her dreams and hopes and possibilities,. We can also talk about her not making it to those events or the possibility of her making it to those events. Mostly though we have no idea whatsoever whats really going to happen. She wasn't supposed to be doing as well as she is. It is one day at a time....she is thoroughly enjoying her good days...she is a different person than she was. I am also quite different. It has been a poignant time. She does not have a husband to take care of her so much of that responsibility falls on my sister and I, and it's ok. Today was a good day. Tomorrow may be not. All of this is a process and you will grow and get through it, I promise. This board has many many wise and wonderful women. Always something here to help get through the day even if it is a hello.