Losing my mind with fear

D Lewis said:

KristynRuth
Girl, I just LOVE your fighting spirit. You inspire ME! You always have.

Deb

robroaster said:

losing your mind
I am now 5 years post stage 4a, tonsil and lymph nodes. My 7.5 weeks of radiation and chemo, alon with the 2-3 weeks after, were very trying and I didn't know if, or how, I would make it but I did, and I am a much better person because of my experience. One piece of advice that one of my closest friends gave me when I told him how mentally tough this was for me(he is also a Radiologist)was "you are used to being in control of your life. At this moment you have to hand control over to your doctors and caregivers. When you finally resolve yourself to that, it will become easier for you to deal with it." My wife also surrounded me with friends and family to help out. I would be happy to talk to you if you would like. I live in NJ and was treated at Beth Israel in NY. I can be reached at 732-687-3518 and my name is Rob Jaffe.

luv4lacrosse said:

GIVE YOURSELF TO YOUR CAREGIVER
I learned the hard way being a control freak. Once I turned over my situation to my wife, (caregiver) I was finally able to focus on the only job at hand, Getting through the treatment and doing everything I could to heal and recover the best that I could. It sounds like you have a spouse who you can turn things over to, and sounds like he will gladly accept the challenge. The next couple of months will be real tough, but after that things will slowly improve. Just remember this is a small part out of your entire life, and treat it as such.

You can and will do this and come out of the other side just like the rest of us.

Best!!

Mike

D Lewis said:

Climbing that really big hill...
Akotke,

We're all with you on this one, girl. When I started treatment, my sweet 18 year old daughter sent me this in an email. It's too good not to share again:

"Here’s another fun thing i just thought of.

Right now in our lives, mine and yours, it's kinda like backpacking. The load we're carrying is getting heavier and heavier, and the trail is getting steeper and more rocky and more complicated. At first glance this makes us all freak out and throw our hands up and say "o no f*** our lives!" but when you're backpacking it's pretty simple. You reach places like this, and it's make or break time. You have one shot to make it up this scary as hell place so you gotta do it right.

So what do you do?

You stop, assess the situation, take a deep breath, make sure your boots are tied and then you clench your teeth and let your body do what it has to do. You just take a step forward. One step, and when you make that step safely, you look and take another step. You face forward and you just go. One step at a time. You go and you don't stop because you just have to keep going. Do your muscles hurt? Like hell, but if you stop it will only get worse so you keep going.

This is what you have done, and what I have done, and hey, check it out, we're already half way up this once-was-a-scary-mother-f***in-hill. Why, you ask? Because life is a crazy trail full of sh** that sometimes sucks and is scary, but most of the time, it's nothing that can't be easily handled one small well planned step at a time. Even if you have a ton of sh** on your back. It just makes you pay more attention to where you step."
_______
OK, so it's a little profane, but it sure got my attention.

Deb

ekdennie said:

fear
akotke,

I know your fears, I know your pain. My youngest was 4 months old when I was told I had cancer, my other two children were 4 and 2 years old. I had mucoepidermoid carcinoma of the hard palate. I was breastfeeding and enjoying having three young children and I was looking forward to seeing how they would all interact as they got older. then with the diagnosis of cancer I had to think about what would they remember about me, if the worst would happen.
after my surgery, my voice was so different, I had a huge hole and I sounded almost like a deaf person sounds when they try to speak. I sang to my children all the time, but post surgery I couldn't do it. it made me so sad and scared of the future...I don't have the best voice, but I loved to sing to them, it calmed their fears, it comforted them when they were hurt and it made me happy. I eventually got a mouthpiece where I can sing to them, but my voice is forever altered. My youngest will never know what my natural voice sounded like, but he is getting something far more precious...he has me.
I then went through the toughest few months of my life when I had 30 radiation treatments. My oldest was 4 years old and was starting pre-k. i couldn't drive, but I sat in the front seat while my husband drove him to the first day of school. (this was around the time of my surgery). then when radiation began, I forced myself to get out of bed every morning to at least give my son a hug and kiss and wish him a great day at school. I packed his lunches and included a little note to let him know that mommy loved him. (I later found that he had kept them in a secret pocket of his lunch box to look at when he needed his mommy). I would be awake when he came back home to give him another hug and kiss even if it meant I would have to sleep for many hours afterwards.

There are things you can do when your cancer has got you down. I don't know your prognosis but don't just think about what might happen, think about what is happening. the pain you feel is your body healing after the radiation is killing off the cancer cells. you are fighting a very tough battle...it is okay to feel weak, it is okay to cry, just remember you are strong. as a mother you know you are strong. if your child was hurt you would fight to protect them...now you must fight to make memories for your children, you must fight to show them just what it means to be brave. your children are watching you and learning from you. You are not a wimp. a wimp is someone who doesn't have the courage to say I am scared of what the future holds. to make yourself feel better, you could write letters to your son and daughter about all the things you wish them to know...seal them in envelopes and put those in a box. I did this for each of my children. it gave me a sense of peace that if things didn't go as I hoped that at least they would have a piece of me. it helped give me the courage and strength I needed to continue to fight. If you are in pain...tell your doctor...they can give you medication that will help. I took plenty of pain meeds, and I was able to continue to breastfeed my baby...I just called the pediatrician before I began taking any new medication to double check the side effects or if there was a different medication that they would recommend. some I just didn't take, the risks were too great, but others I took.

Right now you need to focus on healing and getting through all this. none of us knows what the future holds, but you do have control over today. make today special for your son and your daughter. you need to eat even when it tastes bad, give yourself children food if you must...I lived on mac and cheese and macaroni with homemade alfredo sauce (minus the pepper). that with a big glass of milk to help it go down and a glass of water to wash away the milk are what helped me though. I didn't eat with my family for 8 weeks or so, I didn't want them to see me in such pain.

you asked where does that strength come from? for me, it came from the glint in my son's eyes when I knew he was up to something, the giggle my daughter couldn't contain when I tickle her, and the huge baby smile from my youngest son when he would see me. my strength came from my mother and my husband who worked so hard to help my children still have a normal life even when mommy couldn't participate in everything. my strength came from my tears as I learned to grieve what would never be again and learned to embrace what was still here. Radiation is pain, that is true, it is a lot of pain....but it is pain with an end. it won't last forever. the side effects are dramatic, but they can and will improve. they may not be the same as before, but you get to rediscover food and how it tastes and how it feels much like your baby girl. You will get to watch her walk and celebrate her first birthday...you just have to believe. sometimes that is the hardest thing to do...to just believe that you will see it, that you will be there. make plans for just in case, but just believe. that tiny sliver of hope can grow and grow.

right now, you are in the midst of the battle. you will be fighting every day to win the war. each breath you take, each moment you share with your family is one more battle that YOU have WON! Now this will sound harsh and I mean it to be a kick in the rear, but a supportive one. if you don't want your son to see you cry and beg to give up...then just don't do it in front of him, no matter how much your pain is. excuse yourself from the room he is in, or ask him to give you a mommy minute. then cry your eyes out. when you are done, go give him a hug...no one likes to see their mom in pain, so explain that you are in pain because you and the radiation are fighting the cancer. I don't know how old he is, but you can ask him if he would like to draw you a picture of the two of you fighting the cancer as a team. if he is older, ask him how he is feeling about seeing you in pain, then tell him something he can do to help you feel better. this will not last forever. you may be at the beginning of your radiation battles, but this is the perfect time to determine how you want your son to remember these moments...do you want him to remember you crying or do you what him to remember your strength...don't think of it as how he will remember you if you don't make it, but how he will remember you if you do.

wishing you all the best, medication to help with the side effects, and tons of hugs...we all need a hug sometimes...so HUGS!
elizabeth

p.s. I still have dry mouth, but my youngest son is now 13 months old and I have gotten back most of my taste buds...things are different than they were before, food and life wise, but I am here to enjoy tasting food again and learning how to live with my new normal. good luck finding your new normal...it is quite a journey...I know you are up for it though!

ekdennie said:

fear
akotke,

I know your fears, I know your pain. My youngest was 4 months old when I was told I had cancer, my other two children were 4 and 2 years old. I had mucoepidermoid carcinoma of the hard palate. I was breastfeeding and enjoying having three young children and I was looking forward to seeing how they would all interact as they got older. then with the diagnosis of cancer I had to think about what would they remember about me, if the worst would happen.
after my surgery, my voice was so different, I had a huge hole and I sounded almost like a deaf person sounds when they try to speak. I sang to my children all the time, but post surgery I couldn't do it. it made me so sad and scared of the future...I don't have the best voice, but I loved to sing to them, it calmed their fears, it comforted them when they were hurt and it made me happy. I eventually got a mouthpiece where I can sing to them, but my voice is forever altered. My youngest will never know what my natural voice sounded like, but he is getting something far more precious...he has me.
I then went through the toughest few months of my life when I had 30 radiation treatments. My oldest was 4 years old and was starting pre-k. i couldn't drive, but I sat in the front seat while my husband drove him to the first day of school. (this was around the time of my surgery). then when radiation began, I forced myself to get out of bed every morning to at least give my son a hug and kiss and wish him a great day at school. I packed his lunches and included a little note to let him know that mommy loved him. (I later found that he had kept them in a secret pocket of his lunch box to look at when he needed his mommy). I would be awake when he came back home to give him another hug and kiss even if it meant I would have to sleep for many hours afterwards.

There are things you can do when your cancer has got you down. I don't know your prognosis but don't just think about what might happen, think about what is happening. the pain you feel is your body healing after the radiation is killing off the cancer cells. you are fighting a very tough battle...it is okay to feel weak, it is okay to cry, just remember you are strong. as a mother you know you are strong. if your child was hurt you would fight to protect them...now you must fight to make memories for your children, you must fight to show them just what it means to be brave. your children are watching you and learning from you. You are not a wimp. a wimp is someone who doesn't have the courage to say I am scared of what the future holds. to make yourself feel better, you could write letters to your son and daughter about all the things you wish them to know...seal them in envelopes and put those in a box. I did this for each of my children. it gave me a sense of peace that if things didn't go as I hoped that at least they would have a piece of me. it helped give me the courage and strength I needed to continue to fight. If you are in pain...tell your doctor...they can give you medication that will help. I took plenty of pain meeds, and I was able to continue to breastfeed my baby...I just called the pediatrician before I began taking any new medication to double check the side effects or if there was a different medication that they would recommend. some I just didn't take, the risks were too great, but others I took.

Right now you need to focus on healing and getting through all this. none of us knows what the future holds, but you do have control over today. make today special for your son and your daughter. you need to eat even when it tastes bad, give yourself children food if you must...I lived on mac and cheese and macaroni with homemade alfredo sauce (minus the pepper). that with a big glass of milk to help it go down and a glass of water to wash away the milk are what helped me though. I didn't eat with my family for 8 weeks or so, I didn't want them to see me in such pain.

you asked where does that strength come from? for me, it came from the glint in my son's eyes when I knew he was up to something, the giggle my daughter couldn't contain when I tickle her, and the huge baby smile from my youngest son when he would see me. my strength came from my mother and my husband who worked so hard to help my children still have a normal life even when mommy couldn't participate in everything. my strength came from my tears as I learned to grieve what would never be again and learned to embrace what was still here. Radiation is pain, that is true, it is a lot of pain....but it is pain with an end. it won't last forever. the side effects are dramatic, but they can and will improve. they may not be the same as before, but you get to rediscover food and how it tastes and how it feels much like your baby girl. You will get to watch her walk and celebrate her first birthday...you just have to believe. sometimes that is the hardest thing to do...to just believe that you will see it, that you will be there. make plans for just in case, but just believe. that tiny sliver of hope can grow and grow.

right now, you are in the midst of the battle. you will be fighting every day to win the war. each breath you take, each moment you share with your family is one more battle that YOU have WON! Now this will sound harsh and I mean it to be a kick in the rear, but a supportive one. if you don't want your son to see you cry and beg to give up...then just don't do it in front of him, no matter how much your pain is. excuse yourself from the room he is in, or ask him to give you a mommy minute. then cry your eyes out. when you are done, go give him a hug...no one likes to see their mom in pain, so explain that you are in pain because you and the radiation are fighting the cancer. I don't know how old he is, but you can ask him if he would like to draw you a picture of the two of you fighting the cancer as a team. if he is older, ask him how he is feeling about seeing you in pain, then tell him something he can do to help you feel better. this will not last forever. you may be at the beginning of your radiation battles, but this is the perfect time to determine how you want your son to remember these moments...do you want him to remember you crying or do you what him to remember your strength...don't think of it as how he will remember you if you don't make it, but how he will remember you if you do.

wishing you all the best, medication to help with the side effects, and tons of hugs...we all need a hug sometimes...so HUGS!
elizabeth

p.s. I still have dry mouth, but my youngest son is now 13 months old and I have gotten back most of my taste buds...things are different than they were before, food and life wise, but I am here to enjoy tasting food again and learning how to live with my new normal. good luck finding your new normal...it is quite a journey...I know you are up for it though!

Glenna M said:

Elizabeth...
What a beautiful, heartwarming response!!! You are a very strong woman who has inspired me to become stronger myself.

I hope akotke reads your post and is able to gain strength from you.

Stay well,
Glenna