My Mom...MS AND now CANCER

[Nay91400]

HELLO EVERYONE,

I WAS VERY ACTIVE ON THIS SITE BACK IN 2011 WHEN I WAS NEWLY DIAGNOSED. I AM EXTREMELY LUCKY IN THAT I HAVE LITTLE TO NO SYMPTOMS, MY MS WAS CAUGHT VERY EARLY AND I WAS IMMEDIATELY PUT ON COPAXONE.

MY MOTHER WAS NOT SO LUCKY. SHE HAS HAD RRMS FOR MANY YEARS, WAS DIAGNOSED MAYBE 10 YEARS AGO BUT HAS HAD IT FOR MUCH LONGER. SHE IS GETTING PROGRESSIVELY WORSE. SHE SUFFERS FROM SEVERE FOOT DROP, SHE CAN BARELY LIFT EITHER OF HER FEET. THIS IS THE WORST OF HER SYMPTOMS AT THE MOMENT BUT THERE ARE MANY OTHERS.

I MOVED ACROSS THE COUNTRY A YEAR AGO. IT WAS A HARD DECISION, BUT I DID IT FOR ME (I MOVED WITH MY LONG TERM BOYFRIEND.) I KNEW OF I DIDN'T DO IT I WOULD REGRET IT. I AM 27, HE IS 29. I KNEW IF I DIDN'T DO THIS WHILE I WAS STILL YOUNG, I WOULD REGRET IT. BUT STILL, I FEEL VERY GUILTY FOR LEAVING HER. SHE MISSES ME, OF COURSE. I HAVE BEEN ABLE TO VISIT 3 TIMES SINCE THE MOVE IN APRIL, 2012.

SHE HAS BEEN HAVING ISSUES WITH HER BETASERON SO SHE WAS SENT FOR MRIS. LONG STORY SHORT...SHE WAS TOLD THAT IT LOOKS LIKE SHE HAS LIVER CANCER. THREE GROWTHS, 1 LARGE, 2 SMALL. APPARENTLY THIS WAS ON HER FALL MRI BUT HER NEUROLOGIST NEVER DID ANYTHING WITH IT. HE IS SUPPOSED TO BE A TOP DOC...

I DO NOT HAVE A LOT OF INFORMATION YET BUT I AM TERRIFIED. I HIDE IT FROM HER BECAUSE I DON'T WANT TO STRESS HER OUT FURTHER. ODDS ARE THE CANCER CAME FROM SOMEWHERE ELSE...ONLY FURTHER TESTING WILL TELL US WHERE, WHAT STAGE...I JUST KNOW EVEN IF ITS TREATABLE THE TREATMENTS WILL ONLY MAKE HER WEAKER. I AM NOT IN THE POSITION TO MOVE BACK...I DO NOT KNOW WHAT TO DO. ANY COMFORTING WORDS FROM SOMEONE WHO HAS DEALT WITH MS AND CANCER, OR THE GUILT OF LEAVING A SICK PARENT, I WOULD LOVE TO HEAR WHAT YOU THINK.

THANK YOU ALL FOR READING.

[CaroleL]

Hi Nay,

I haven't dealt with these issues but I'm responding to your post to tell you that you and your mom are in my prayers. I can't imagine what you're going through, but know that you will find support and compassion here.

[Nay91400]

Thank you so much, Carole. I really appreciate that. I am much more composed today, but the wait to find out is killing me while at the same time I am dreading getting more information. My poor mom...it is just so unfair. I hate to say this but I look at other people I know whos mothers are so healthy and I am so jealous. My mother is only 62 years old...it is so depressing to see her suffering so much already and it holds her back from a lot of things. Now this...

[mj30walls]

Nay, I am so sorry to hear this. I can't imagine what you both are going through right now. You and your mom are in my thoughts and prayers.

[Nay91400]

Thank you so much, Mj. I just feel really helpless.

[Seasha]

I am so sorry, Nay~~ of course you must be terrified! I am in a different situation in that I'm close to your mom's age, but my folks are 91 and 92 and I worry constantly. They live halfway across the country from me. When my mom had troubles a few years back, I flew out for a few weeks and traveled 2 more times that year to be with her.

It was so taxing on my health (I have secondary progressive) but I had to do it. Especially when she asked me to be with her. I imagine that you would do the same for your mom if and when it's necessary.

In the meantime, try not to stress over the unknowns- easy to say, I know, but stress can cause havoc for us. Are there any other family members closer to her - someone close that you could talk to about your fears or get information so as not to trouble your mom?

Of course, you know you have us here! Sending prayers for you and your mom and please keep us posted. And take care of yourself!

[jessiesmom]

MS and Cancer

About 7 years ago I was diagnosed with RRMS after my 2nd bout of Optic Neuritis. I was put on Rebif. 4 years later I was diagnosed with breast cancer. I live in Northern California and my parents live in South Florida. For me, surgery came first and then 16 rounds of chemotherapy. I had not seen my parents in 3 years prior to my surgery. They are both pretty stoic types but I could tell this was a really big deal when they flew out to see me while I was in the hospital. No matter how old you are it is good to know that your parents still care about you.

Throughout my chemo I kept in pretty close contact with them. My dad is an M.D. so I sent him copies of all scans and lab work so I didn't have to interpret things for him. If your mom is at all computer savvy you can use Skype or FaceTime. It isn't perfect but it is better than nothing.

I should mention that I never had an MS flare during my active treatment phase or the reconstruction phase. Some do. Some do not. Like so much with MS, there is no way of knowing which one you will turn out to be.

The message board of the American Cancer Society is called the Cancer Survivors Network. It is divided up according to the type of cancer in which you are interested. Try www.csn.cancer.org/forum. There are a lot of very active posters there. The main site has a lot of information about cancer. When you first start reading it can be overwhelming. Certainly it is an education you wish you never had to get.

I wish you and your mother the best of luck. Been there. Done that.

[swingingwillow]

Hi Nay,

Please try not to feel guilt. I know easy to say right?

You left with your partner to pursue your life dreams I'm assuming.

I'm also assuming that you felt OK leaving her while she had MS, but it's now that she has MS and cancer that you feel badly and maybe guilty?

It's not your fault hun.

And like another poster said, I'm sure that if you can afford it that you will go and see your mom when you need to or when she needs you to. And definitely find out if there are friends or relatives nearby your mom to help out too if it is easily done.

Just the fact that you're sharing this with everyone shows how much you care about and love your mom. Love yourself too though.

Hugs.

[aitch10]

OMGosh! I am so sorry.

I can't speak for the cancer, but when I went away to college and stayed away to work and travel I didn't feel the least bit guilty because I assumed I'd be back sooner rather than later to help look after my mom.

I did return 10 years later. Little did I know that I would do so having MS myself.

Sorry, I digress. I think you need to visit your mom as often as you can and call lots, but you NEED to live your life. My .02.

[alliesmommy]

For Nay

Hi Nay,

I am just curious but what kind of troubles was your Mom having with the Betaseron? I have been on Beta since dx in 2011 and am starting to have some problems with it and going to discuss with my neuro

[Nay91400]

I am so sorry, Nay~~ of course you must be terrified! I am in a different situation in that I'm close to your mom's age, but my folks are 91 and 92 and I worry constantly. They live halfway across the country from me. When my mom had troubles a few years back, I flew out for a few weeks and traveled 2 more times that year to be with her.

It was so taxing on my health (I have secondary progressive) but I had to do it. Especially when she asked me to be with her. I imagine that you would do the same for your mom if and when it's necessary.

In the meantime, try not to stress over the unknowns- easy to say, I know, but stress can cause havoc for us. Are there any other family members closer to her - someone close that you could talk to about your fears or get information so as not to trouble your mom?

Of course, you know you have us here! Sending prayers for you and your mom and please keep us posted. And take care of yourself!

Thank you, Seasha. Yes, I will do all I can to be with her as much as possible. Its hard because I need to keep my job here too, but I know my employers will be very supportive (I am a nanny and they are like family to me at this point.) She lives with a wonderful man (her boyfriend) but he is older, 72. It is a lot for him to handle. Her brother is there too which is helpful. But he works a lot...

[Nay91400]

About 7 years ago I was diagnosed with RRMS after my 2nd bout of Optic Neuritis. I was put on Rebif. 4 years later I was diagnosed with breast cancer. I live in Northern California and my parents live in South Florida. For me, surgery came first and then 16 rounds of chemotherapy. I had not seen my parents in 3 years prior to my surgery. They are both pretty stoic types but I could tell this was a really big deal when they flew out to see me while I was in the hospital. No matter how old you are it is good to know that your parents still care about you.

Throughout my chemo I kept in pretty close contact with them. My dad is an M.D. so I sent him copies of all scans and lab work so I didn't have to interpret things for him. If your mom is at all computer savvy you can use Skype or FaceTime. It isn't perfect but it is better than nothing.

I should mention that I never had an MS flare during my active treatment phase or the reconstruction phase. Some do. Some do not. Like so much with MS, there is no way of knowing which one you will turn out to be.

The message board of the American Cancer Society is called the Cancer Survivors Network. It is divided up according to the type of cancer in which you are interested. Try www.csn.cancer.org/forum. There are a lot of very active posters there. The main site has a lot of information about cancer. When you first start reading it can be overwhelming. Certainly it is an education you wish you never had to get.

I wish you and your mother the best of luck. Been there. Done that.

Thank you, Jessiesmom. That is helpful and I will check out the cancer site once I know a bit more. I am so sorry to hear that you went through so much but I'm glad to know you got through it. And we do both have skype...we will need to start doing that more regularly.

[Nay91400]

Hi Nay,

Please try not to feel guilt. I know easy to say right?

You left with your partner to pursue your life dreams I'm assuming.

I'm also assuming that you felt OK leaving her while she had MS, but it's now that she has MS and cancer that you feel badly and maybe guilty?

It's not your fault hun.

And like another poster said, I'm sure that if you can afford it that you will go and see your mom when you need to or when she needs you to. And definitely find out if there are friends or relatives nearby your mom to help out too if it is easily done.

Just the fact that you're sharing this with everyone shows how much you care about and love your mom. Love yourself too though.

Hugs.

Hello swingingwillow,

Truth is, I felt guilty leaving her with the MS...the cancer is just making it worse. I know she doesn't have the highest quality of life and that me being away doesn't help her. But yes, we moved to pursue our dreams. I will get out there as much as I possibly can. I just feel like it will never be enough to help.

[Nay91400]

OMGosh! I am so sorry.

I can't speak for the cancer, but when I went away to college and stayed away to work and travel I didn't feel the least bit guilty because I assumed I'd be back sooner rather than later to help look after my mom.

I did return 10 years later. Little did I know that I would do so having MS myself.

Sorry, I digress. I think you need to visit your mom as often as you can and call lots, but you NEED to live your life. My .02.

That is quite a story aitch. I am sorry to hear that. But thank you for the advice...that is kind of how I felt when I left as bad as the guilt was. Its so hard...normally by the time people have ill parents, they are elderly and the child has already established their lives, started a family, etc. Its so different when you're only starting all of that and your parent needs you NOW. I truly wish I could be in two places at once.

[Nay91400]

Hi Nay,

I am just curious but what kind of troubles was your Mom having with the Betaseron? I have been on Beta since dx in 2011 and am starting to have some problems with it and going to discuss with my neuro

Alliesmommy,

Basically, she was just having really severe issues with the night time side effects and they were becoming more often as well. Night sweats/fever/chills...that sort of thing. Plus, her MS was seeming to take a turn for the worse, though that could also be the Cancer. We're wondering now. How old are you? I kind of think Copaxone is the way to go if you're young. I'm on it...they said its not dangerous to get pregnant (since I am wanting children within the next 5ish years), and it works with your immune system instead of against it. It isn't supposed to have any of the side effects of the interferons either. I hate the injection site reactions and the marks its leaving on my skin, but gota take the good with the bad.