Emotional toll

Kari2007

I'm one week out from a 100mg dose of Cisplatin and still struggling with fatigue. Yesterday, after a foggy morning, I actually had a really great afternoon with more energy than i've had in a while. But, another bad night of sleep (struggling with gas pains) left me feeling quite down this morning. I have a nine year old and her cousins are visiting right now and with the holidays all I want to be doing is having fun with my family, not feeling like crap. I was having a lot of anxiety this morning over the fact that I threw up (I think I tried to drink a milkshake too fast) and that I was feeling weak. I just want to get back that energy I had yesterday and am being really hard on myself for feeling down. 

What helps/helped you guys get through the low moments? I felt a little better after crying on my husband's lap and then getting out to the beach with my family. What helps every stay grounded in the moment? Sometimes I feel like I'm just on this ride that I can't get off and the fear of what could happen or what is happening feels overwhelming. 

Thanks, everyone. 

stevenpepe

I just completed 33 radiation

I just completed 33 radiation treatments and took 2 weeks off from work to get through the fatigue. I guess the only thing that keeps me grounded is the hope that soon, this will be over and life will get better again. July 4th for me is just another day to relax with my girlfriend and enjoy being alive. Even if it means staying in, relaxing, doing a puzzle, or watching tv. I can't go too far from home because of fatigue but I'm making the best of it. Happy 4th!

dygit

Sorry for your ups and downs!

i was a bit of a panic when I found out I had cancer, but after my PET scan, once I knew it had not metastasized, my wife and I breathed a big sigh of relief. The ENT doc was surprised at our reaction since I "only" had cancer in my supra glottis and 2 lymph nodes.

Kari - try and let go of your fear and embrace the thought that your treatments and the sucky side effects are only going to be temporary. It is a cliche for sure, but take one day at a time. You have a family that you love and they love you  - that is more than many people have in this life. You are going to get through this temporary setback. Try and rest as much as you can; meditate to calm your mind; listen to music that makes you feel at ease. Do everything you can to remove pressure and I think you will find that the fear will slip away. There is a light at the end of the tunnel.......you will come out the other side, whole and unbroken. 

CivilMatt

pay the toll

Kari,

If the anxiety become a hindrance to treatments there are good (safe) meds to help you out.  You want to address what you can to reduce your burden in all ways possible.

I am sorry about feeling out of it, you are not, you are just a little restricted.

Try to enjoy something about today, even if it is something small.  Everything counts!

Matt

cardoza33

Give yourself a break

You have cancer and you are in a battle.  Some days you will feel okay other horrible, but you should not get down on yourself.  Your family completely understands you are battling this disease.  Don't put added pressure on yourself.  I am 5 months out and I take no shame in exiting anytime I feel tired and need to go rest.  I am still recoverying. I feel great compared to how I was during and after treatment, but I still realize I need rest when I am tired.  I continue to hear it will take a year before you fully "recover" from most of the side effects.  Some you will not recover from and have to learn to live with.  You are in a battle.  You are doing great, but give yourself a break and rest as much as you neeed to.  if you still have anxiety, talk to your doctors and get some medication to help.  No shame in that. do whatever you need to do to get through this battle.

Kari2007

Thank you

It's so good to hear words of encouragement from those who know what it is to live this. Mornings are my tough time and I seem to gain energy and momentum throughout the day. It's important to be reminded that my biggest job right now is to heal myself - something I'm doing for myself and my family. 

Thanks for helping me stay focused!

Kari2007

stevenpepe said:

I just completed 33 radiation

I just completed 33 radiation treatments and took 2 weeks off from work to get through the fatigue. I guess the only thing that keeps me grounded is the hope that soon, this will be over and life will get better again. July 4th for me is just another day to relax with my girlfriend and enjoy being alive. Even if it means staying in, relaxing, doing a puzzle, or watching tv. I can't go too far from home because of fatigue but I'm making the best of it. Happy 4th!

Thanks

I hope you had a restful day, Steven! 

Kari2007

dygit said:

Sorry for your ups and downs!

i was a bit of a panic when I found out I had cancer, but after my PET scan, once I knew it had not metastasized, my wife and I breathed a big sigh of relief. The ENT doc was surprised at our reaction since I "only" had cancer in my supra glottis and 2 lymph nodes.

Kari - try and let go of your fear and embrace the thought that your treatments and the sucky side effects are only going to be temporary. It is a cliche for sure, but take one day at a time. You have a family that you love and they love you  - that is more than many people have in this life. You are going to get through this temporary setback. Try and rest as much as you can; meditate to calm your mind; listen to music that makes you feel at ease. Do everything you can to remove pressure and I think you will find that the fear will slip away. There is a light at the end of the tunnel.......you will come out the other side, whole and unbroken. 

Thanks

Your words meant a lot, thank you! It is hard to take things one day at a time, but probably the key to my sanity. I did some meditation today and spent time with a good friend. Now I'm tired, but with a feeling of satis faction. Thanks for helping me get through.

cardoza33

Kari2007 said:

Thank you

It's so good to hear words of encouragement from those who know what it is to live this. Mornings are my tough time and I seem to gain energy and momentum throughout the day. It's important to be reminded that my biggest job right now is to heal myself - something I'm doing for myself and my family. 

Thanks for helping me stay focused!

The mornings were horrible

The mornings were horrible for me, particularly in recovery.  I threw up every morning for months after treatment. It was so absolutely horrible and I could not figure it out for months.  I tried many different things and it was mentally depressing.  I did not feel better until the afternoon each day.  I developed anxiety, which I never had before.  I finally realized it was from over production of stomach acid and if I got up early and eat oatmeal it prevented it.  Once I took care of the throwing up each morning, my mental health made a 100 percent turn around and within a week I started back to work.  My point being, this proces completely sucks and it will take a mental toll on you, but if you keep believing and working at it one day it will change and you will get your life back.  Keep working each day and before you know it you will be on this forum give words of encouragement to someone in your spot now.  Fight on!!!  

Kari2007

cardoza33 said:

The mornings were horrible

The mornings were horrible for me, particularly in recovery.  I threw up every morning for months after treatment. It was so absolutely horrible and I could not figure it out for months.  I tried many different things and it was mentally depressing.  I did not feel better until the afternoon each day.  I developed anxiety, which I never had before.  I finally realized it was from over production of stomach acid and if I got up early and eat oatmeal it prevented it.  Once I took care of the throwing up each morning, my mental health made a 100 percent turn around and within a week I started back to work.  My point being, this proces completely sucks and it will take a mental toll on you, but if you keep believing and working at it one day it will change and you will get your life back.  Keep working each day and before you know it you will be on this forum give words of encouragement to someone in your spot now.  Fight on!!!  

Mornings

I think eating early is a key to my feeling awful in the morning, too. I notice that I'm really hungry when I first wake up, but I'm so tired, that I don't get up to eat. Then, my blood sugar drops, which causes the nausea and anxiety. I'm keeping a protein bar by the bed tonight to see if eating a little something in the morning helps with this. Thanks!

cardoza33

Kari2007 said:

Mornings

I think eating early is a key to my feeling awful in the morning, too. I notice that I'm really hungry when I first wake up, but I'm so tired, that I don't get up to eat. Then, my blood sugar drops, which causes the nausea and anxiety. I'm keeping a protein bar by the bed tonight to see if eating a little something in the morning helps with this. Thanks!

I was thinking one day, why

I was thinking one day, why don't I feel horrible at 4 a.m. when I get up to go to the bathroom?  I was up constantly numerous times at night going to the bathroom because of drinking lots of water with dry mouth.  I felt the same as when I went to bed, no nausea.  But when I woke up I would throw up. So I got up at 4 a.m. and eat oatmeal.....changed everything.  I have done it everyday since.  I now wake up at 5 or 6, but with the same results.  Give it a try.  Good luck.  Tony

wmc

It is just one day at a time, and still is.

My tumor was about the size of the end of your thumb [3cm x 2.5cm] I smoked for 42 years and the tumor was pressing on my left vocal cord, and I was aspirating and coughing large amounts of blood and I was a gray color. Only five thought I would survive and I was one of them. My Son and Brother, and 87 year old Father-in-law had his granddaughter drive him 300 miles so he could be there when I had the surgery. didn't think I would make it. My lungs were bad and the doctor came in and said I would not survive radiation or surgery the way my lungs were they could not keep me breathing. The anesthesiologist would not touch me. I was given only two choices. One was do nothing and see how long I would live, and the other was to remove my larynx and the tumor with my vocal cords. This would mean I will breathe through a hole they will make in my neck and it will be forever. Not a hard choice, breathe through my neck, or not breathe at all. Now I really have no real idea that someone who has radiation or chemo really is like. Yes, I have seen many go through the treatment and on here heard so many and what they went through. 

Mine was a very major life altering procedure. Almost every muscle that you need to swallow, is connected to the larynx that I don't have. I had to relearn how to swallow and talk without vocal cords. When they separated my trachea and throat they put in a prosthesis [small hole] that when I exhale I can block and divert the air to speak. The air goes through a 4.5mm opening, [like a small straw in size] Now you add stage 3 COPD and GURD and it gets interesting at times. How do we get through the low times, you just do. Every day I have to squirt saline in my neck to help clear it and as soon as the water hits it you cough so hard you turn red and see stars. Then I have to insert 6" tweezers in the hole and clean the prosthesis and then a special brush also. If I don't do this the mucus can get thick and dry out which will cause a mucus plug and I stop breathing.  It is something I just had to get used to the best you can. That and the ACS gives me 53% survival for 5 years. So you ignore the numbers and my true odds are up around 75-80% and I am really doing very good. I can do almost everything I ever did before.

You will have bad days and just take them day by day. You will get through this and soon will see the light at the end of the tunnel. [It's a long tunnel] Yes this will change you. For me, recovery really started when I accepted it, and that is when I started to really live. I enjoy every day and see life much different, but better. You have found the best support group you could fine and we all will be here for you. You are not alone, and we do understand what you are going through and feel. You will be in my thoughts and prayers.

Bill  Oct 2013

RottiesMom

Kari

I think we are at around the same point in treatment. I had my first Cisplatin June 21 and 5 radiation treatments down.  My next Cisplatin is July 12.  For 3 days after chemo I couldn't get off the couch (radiation hadn't started yet).  I was counting the minutes until the next anti nausea pill.  It slowly improved, but I still feel nauseous every morning. Saline crackers and a Zofran help with that.  I like the idea of oatmeal and going to try that. I also have a very supportive husband and kids (they are older 30, 28, 26 and my daughter-in-law).  My low moments, I pray...just talking to God and asking Him to help me surrender my will to Him.  We are all created for some purpose which no other person has and even in our sickness we serve Him.  I don't mean to sound all preachy, but this is what gets me through.

Joanne 

Kari2007

wmc said:

It is just one day at a time, and still is.

My tumor was about the size of the end of your thumb [3cm x 2.5cm] I smoked for 42 years and the tumor was pressing on my left vocal cord, and I was aspirating and coughing large amounts of blood and I was a gray color. Only five thought I would survive and I was one of them. My Son and Brother, and 87 year old Father-in-law had his granddaughter drive him 300 miles so he could be there when I had the surgery. didn't think I would make it. My lungs were bad and the doctor came in and said I would not survive radiation or surgery the way my lungs were they could not keep me breathing. The anesthesiologist would not touch me. I was given only two choices. One was do nothing and see how long I would live, and the other was to remove my larynx and the tumor with my vocal cords. This would mean I will breathe through a hole they will make in my neck and it will be forever. Not a hard choice, breathe through my neck, or not breathe at all. Now I really have no real idea that someone who has radiation or chemo really is like. Yes, I have seen many go through the treatment and on here heard so many and what they went through. 

Mine was a very major life altering procedure. Almost every muscle that you need to swallow, is connected to the larynx that I don't have. I had to relearn how to swallow and talk without vocal cords. When they separated my trachea and throat they put in a prosthesis [small hole] that when I exhale I can block and divert the air to speak. The air goes through a 4.5mm opening, [like a small straw in size] Now you add stage 3 COPD and GURD and it gets interesting at times. How do we get through the low times, you just do. Every day I have to squirt saline in my neck to help clear it and as soon as the water hits it you cough so hard you turn red and see stars. Then I have to insert 6" tweezers in the hole and clean the prosthesis and then a special brush also. If I don't do this the mucus can get thick and dry out which will cause a mucus plug and I stop breathing.  It is something I just had to get used to the best you can. That and the ACS gives me 53% survival for 5 years. So you ignore the numbers and my true odds are up around 75-80% and I am really doing very good. I can do almost everything I ever did before.

You will have bad days and just take them day by day. You will get through this and soon will see the light at the end of the tunnel. [It's a long tunnel] Yes this will change you. For me, recovery really started when I accepted it, and that is when I started to really live. I enjoy every day and see life much different, but better. You have found the best support group you could fine and we all will be here for you. You are not alone, and we do understand what you are going through and feel. You will be in my thoughts and prayers.

Bill  Oct 2013

True grit

Bill, you are an amazing guy! 

Kari2007

RottiesMom said:

Kari

I think we are at around the same point in treatment. I had my first Cisplatin June 21 and 5 radiation treatments down.  My next Cisplatin is July 12.  For 3 days after chemo I couldn't get off the couch (radiation hadn't started yet).  I was counting the minutes until the next anti nausea pill.  It slowly improved, but I still feel nauseous every morning. Saline crackers and a Zofran help with that.  I like the idea of oatmeal and going to try that. I also have a very supportive husband and kids (they are older 30, 28, 26 and my daughter-in-law).  My low moments, I pray...just talking to God and asking Him to help me surrender my will to Him.  We are all created for some purpose which no other person has and even in our sickness we serve Him.  I don't mean to sound all preachy, but this is what gets me through.

Joanne 

We are on a very similar

We are on a very similar treatment path. My next dose of chemo is on the 19th. I was telling my sister last night that I barely remember the first few days after chemo! My nausea was pretty controlled, but the meds and the fatigue just knocked me out. Maybe I should count my blessings! I am not religious (but am spiritual) and am working on the concept of surrender as my mantra. Surrender to the bad, surrender to the good. Try to live in the moment and trust that this too shall pass.

phrannie51

There is much very good advice

above.  What I learned during treatment, and had to put into practice was One day at a time...live the day I'm in, tomorrow would be here soon enough.  That doesn't sound preachy to me at all, Joanne.  It was good for me to learn that I wasn't in this alone...well, I already knew that but I was in a place where I had to use what I knew.  If I caught myself drifting off into the future, I dragged my mind back to the day I was in.  Acceptance that this is where I was for this day, that tomorrow was out of reach. 

There are days when all a person can do is put one foot in front of the other....plod towards tomorrow....The bottom line is that it's temporary....I know for a fact that talking on here to people going through treatment with me helped a lot....

p

Fritz

Hang in there Kari!

I know it is tough Kari. We all have been dealt a "crappy" hand with this cancer and treatment regimen. Next Thursday, I was supposed to be stepping off a plane onto the island of St Lucia to celebrate my wonderful marriage of 30 years. Our anniversary was a just few weeks after being diagnosed with Stage IVA Tonsil Cancer on March 1. Instead, I will be on my back, neck locked down by my halloween mask, looking up at my radiation robot buddy for the 31st time with 2 more looks to go. I wish there was a magical way to play this one day at a time, but there is not. I just look at this as "IT IS WHAT IT IS". All things are meant to happen for a reason and maybe this is so I can appreciate my 50th anniversary that much more. As dealing with this today may make that a reality 20 years from now. Who knows?

Anyway, hang in there as we can all beat this demon and come out stronger for our courage in doing so.

Freddie

SusanUES

Kari, girl....

Sure, cry on your husband's lap, do the beach when you can.  This process is hell on all of us...and we who are ahead of you truly feel your pain.  I have no great insights or advice...I got through surgery, rads and the awful aftermath with a few things.  Surrender to a Higher Power.  Working full time with great co-workers who picked up my slack, picked up my phone, were there for me from the beginning.  Play time with friends and family, to the extent I could manage it.  A rather firm belief that this was a very big speedbump in my life and one from which I would recover and put pedal to the metal again.  And so shall you, count on it!