Cancer Again! Now What?

Aloha Everyone,

     I was unable to sleep and found this web site.  Most of the stories made me cry and gave me comfort that I would be able to talk to other survivors.  Lately, I find myself very frustrated with my current condition.  I am a 41 yr. old woman with a 2 year old son and a very loving husband.  Let me start from the beginning.  In January of 1995, I had a total thyroidiectomy due to papillary cystic carcinoma thyroid extracapsular thymic invasion.  Cancer at the age of 29!!!  I couldn't say the word in the beginning but was able to grip it with my faith in tack.  After radioactive treatment I was given a "no cancer" body scan on my 30th birthday.   Although, I was fore warned by my surgeon that someday I may have trouble with my lymph nodes.  I took that warning with a grain of salt.  I was happy to be alive.  Then in Dec of 95, I was faced with a paralyzed left vocal chord.  Eventually, I was able to talk like a normal person.  My life changed and many sacrifices we're dealt with, especially my nutrition.   

     Now I am faced with another challenge.  In August of 2006, I went in for a revision thyroidectomy and neck dissection.  Due to complications a tracheotomy, and innominate artery repair was done.  I spent 6 weeks in the hospital.  I almost didn't make it.  In Dec 2006, I had a laryngeal cordotomy done to my right vocal chord because it was sacrificed in surgery.  My surgeon doesn't know how I'm able to talk with 2 paralyzed vocal chords.  I am on a hard road to recovery.  We moved from Arizona to Kentucky to be with family.  I have yet to get my new health insurance and start my radioactive treatment.

     I guess I just want to be connected to others who feel like they are alone.  Although, I know I am not alone I could use the support.  My faith is definately being tested.  I stay strong and have good and bad days.  All I want to be is normal which I know will never happen.  As the saying goes "God only gives you what you can handle.".  My question is "How much does a person have to go through to know that someday there will be freedom from pain and suffering?"  I am sorry for the long winded letter and hope I will be able to make new friends.  "Choose the finer things in life and Reject what is worthless with a smile." 

HELLO - just read your message and can't believe I have found someone with almost the same situation.  First I am sorry to hear what you are going through, but can relate.  July 06 I went into surgery knowing I had papillary carcinoma at age 43 (44 in sept.06).  My husband of 25 years has been my rock and hero.  Our two children 21 and 19 have also been great, coming home from college all the time to visit.  My surgeon thought it would be easy only taking small portion of thyroid and home that night.  Unfortunately, cancer was more and I had a total thyroidectomy.  He never did any left/right side dissection.  Never made it out of recovery - went to ICU due to complications with breathing and paralyzed vocal cords.  Underwent 2nd surgery soon after and had a trach tube input.  Don't remember much, but my family said it was tough going for the first week.   I think that was worse than the surgery.  Hated coming home with that thing.  Fortunately, it came out in late august and on my way.  Have had one treatment of RAI and one dose of 120 for radiation.  Since then dealing with the synthroid balance and breathing/talking.  I live in northern california so my husband (with the help of my oncologist)  and I have recently contacted a dr. at Stanford.  My right vocal cord is completely paralyzed and it doesn't look good because the more time that goes by chances of it coming back are slim he told us.  I also have narrowing of the airway tube because of the trach scarring.  Good news is I am seeing him next week to schedule to have colligen injected in the right vocal cord to help with the voice.  This is temporary, but this summer (the one year mark from surgery)  he wants to plan to put a stint in the vocal cord for permanent repair.  He also plans to take care of the airtube at that time.  The only extra problem I am facing is that my last scan last week is showing issues with my lymph nodes in the left side of my neck.  My surgeon didn't remove any during the first surgery and I am worried about facing another surgery for the left side dissection.  I have read so many stories about this it kindof scares me.  I know this cancer is so curable, but it is a long road.  Thank you for writing - you really don't know how it feels to know we are not alone.

keep your faith strong - it does help,

 

Hello again - it's me again.  Sorry for another message but your story has just stayed with me.  My husband read your information and we have been talking.  Why did the surgeon take out your vocal cord?  And what about your trach?  Is it permanent?  Sorry for the extra stuff, but we are very interested in your recovery.

hope today is a good day for you

 

 

On 1/27/2007 Learn Something New Every wrote:

HELLO - just read your message and can't believe I have found someone with almost the same situation.  First I am sorry to hear what you are going through, but can relate.  July 06 I went into surgery knowing I had papillary carcinoma at age 43 (44 in sept.06).  My husband of 25 years has been my rock and hero.  Our two children 21 and 19 have also been great, coming home from college all the time to visit.  My surgeon thought it would be easy only taking small portion of thyroid and home that night.  Unfortunately, cancer was more and I had a total thyroidectomy.  He never did any left/right side dissection.  Never made it out of recovery - went to ICU due to complications with breathing and paralyzed vocal cords.  Underwent 2nd surgery soon after and had a trach tube input.  Don't remember much, but my family said it was tough going for the first week.   I think that was worse than the surgery.  Hated coming home with that thing.  Fortunately, it came out in late august and on my way.  Have had one treatment of RAI and one dose of 120 for radiation.  Since then dealing with the synthroid balance and breathing/talking.  I live in northern california so my husband (with the help of my oncologist)  and I have recently contacted a dr. at Stanford.  My right vocal cord is completely paralyzed and it doesn't look good because the more time that goes by chances of it coming back are slim he told us.  I also have narrowing of the airway tube because of the trach scarring.  Good news is I am seeing him next week to schedule to have colligen injected in the right vocal cord to help with the voice.  This is temporary, but this summer (the one year mark from surgery)  he wants to plan to put a stint in the vocal cord for permanent repair.  He also plans to take care of the airtube at that time.  The only extra problem I am facing is that my last scan last week is showing issues with my lymph nodes in the left side of my neck.  My surgeon didn't remove any during the first surgery and I am worried about facing another surgery for the left side dissection.  I have read so many stories about this it kindof scares me.  I know this cancer is so curable, but it is a long road.  Thank you for writing - you really don't know how it feels to know we are not alone.

keep your faith strong - it does help,

 

Thanks, for putting me at ease that someone else is going through almost the same thing.  I will keep you in my prayers also. Paulette

 

On 1/27/2007 Learn Something New Every wrote:

Hello again - it's me again.  Sorry for another message but your story has just stayed with me.  My husband read your information and we have been talking.  Why did the surgeon take out your vocal cord?  And what about your trach?  Is it permanent?  Sorry for the extra stuff, but we are very interested in your recovery.

hope today is a good day for you

 

My surgery ended up being an 8 hour ordeal.  He tried and tried to work around the right vocal chord but the cancer was right on the nerve.  There was no option but to sacrifice it.  My trach was taken out in December but I still feel like it is still in.  I'm sure it'll take awhile for it to heal.  The outpatient surgery done in Dec was to cut an opening on my right vocal chord so I could breathe easier.  It's been an adjustment but am happy to have the trach out.  Today, is a better day!!  Thanks for caring and keep me posted on your recovery too.  Aloha!!! Paulette

Paulette, I think I private replied to you on the brain cancer message board, and told you about my best friend. I found your initial posting and am just stunned at how similar your story is to my best friend from home. She had the surgery at 29 years old, married at 33, baby at 35 and found the lymph nodes during the second trimester. Her second surgery left her right ear, neck and should completely numb because the surgeon had to dig up under her muscles to get some of the questionable lymph nodes. She had not had the gland radioactively killed after the first surgery, due to the surgeon thinking no need, and wound up 5 years later with it again. I'm so sorry for what you are going through again and I know it must be so very hard. I just want to encourage you and remind you that there is hope with this type of cancer, and as hard as it is, there are better days ahead. Bless your heart. I have always posted on the brain tumor site, but your posts caught my eye, and I'm so glad. I am in East Tennessee. Where in Kentucky are you? I think we are about the same age too. I am 44 yrs old. Take care of yourself and know that I will keep you on my prayer list, and pray that God give you strength and comfort you. I don't believe that God causes cancer, because it has other causes, but I do believe that he is ever faithful to us and that he comforts us and that he hurts with us. He is all good. Please be encouraged in knowing this as you cope with all that is happening in your life. Your new friend, Maddie Ruth

 

On 2/11/2007 Madeline Ruth wrote:

Paulette, I think I private replied to you on the brain cancer message board, and told you about my best friend. I found your initial posting and am just stunned at how similar your story is to my best friend from home. She had the surgery at 29 years old, married at 33, baby at 35 and found the lymph nodes during the second trimester. Her second surgery left her right ear, neck and should completely numb because the surgeon had to dig up under her muscles to get some of the questionable lymph nodes. She had not had the gland radioactively killed after the first surgery, due to the surgeon thinking no need, and wound up 5 years later with it again. I'm so sorry for what you are going through again and I know it must be so very hard. I just want to encourage you and remind you that there is hope with this type of cancer, and as hard as it is, there are better days ahead. Bless your heart. I have always posted on the brain tumor site, but your posts caught my eye, and I'm so glad. I am in East Tennessee. Where in Kentucky are you? I think we are about the same age too. I am 44 yrs old. Take care of yourself and know that I will keep you on my prayer list, and pray that God give you strength and comfort you. I don't believe that God causes cancer, because it has other causes, but I do believe that he is ever faithful to us and that he comforts us and that he hurts with us. He is all good. Please be encouraged in knowing this as you cope with all that is happening in your life. Your new friend, Maddie Ruth

 

Dear Maddie Ruth,

     Thanks for the words of encouragement.  Yep, God only gives us what we can handle.  I guess he thinks I can handle all this.  I hold unto my faith and it has gotten me this far.  My prayers are with you and your family and friends.  I live in Rineyville, Kentucky.  I am 41 yrs.old.  Take Care & God Bless. Aloha, Paulette.