I know I am not alone.......

mybestfriend · New User Joined: 29 Sep 2008 Posts: 6 Location: California

I posted the following to the welcome site when I was first able to post on here yesterday so I thought it might be a good idea to start here with a copy..........

I know I don't know any of you personally but I feel like you are all my friends. I seem to be awake so many times during the night since my husbands recent diagnosis of lung cancer. I met all of you about four o'clock this morning and I knew right away that this was a place I not only wanted to be but I need to be.
I have spent many sleepless nights and many tears have been falling in the last month and a half. I have so much to talk to all of you about but I will do it one day at a time.......
John and I are 73 and 71 years young respectively and have been best friends for 55 years. We have been married for almost 53 years. We have been blessed with 6 wonderful children, 20 grandchildren and 4 great grandchildren. They are the most wonderful thing that ever happened to us. They are certainly making the journey through this recent part of our life more tolerable. I cannot imagine anyone going through this alone.

Thank you for being here and I will try to be stronger and listen to any advice that comes my way. I will go into the details of John's diagnosis and what treatments we are having in future posts.

In January of this year my 5 foot 9 inch husband weighed in at about 180 pounds. We had both been fighting the weight thing for about a year and even had invested in one of the weight loss plans that delivers your food right to your door. It worked for us but then we had put some of the weight back on. John wanted to try it again and I didn't want to spend the $$. To make a long story shorter he started eating less in January and losing weight. I thought he was just working at the diet. WRONG!

Next he worked for a solid 2 or 3 weeks washing down and painting our beach house in Baja getting it ready to sell. He complained of backaches but thought it was his usual problems with his back after strenuous work. WRONG!

We came back to our home here in the states and went to the doctor as the backache was getting much worse. (I won't go to much further about our dealings with this doctor as I have a tendency to get very angry.) She never ordered an xray but assumed he had pulled muscles and or just strained his back. She gave him muscle relaxers and eventually sent him to physical therapy. Like "lambs to the slaughter" we followed her orders. He was still losing weight (153 pounds), taking Tylenol and Motrin around the clock for pain and not sleeping for more than an hour at a time. I finally demanded they take Xrays and do some blood work. I knew things were not right. It was a nurse practitioner that wrote the order for the xrays as the doctor was too busy to see us.......

To end the beginning of our story......... the back xray showed several fractured vertebrae and a spot on his lung. A chest xray was ordered the next day. The following week he had a PET scan. Needless to say we had called our old doctor in a town about 2 hours away and he was ready for us right away with all the doctors set up for appointments within the next week, the oncologist and oncology radiologist.

On August 14th 2008, the day after his 73rd birthday. John was diagnosed with stage 4 non small cell lung cancer which has metastasized to his spine. All of the words in this strange world we are entering are so new to me that I beg your forgiveness as I learn the new language.

I will share more of our story in susequent posts. Thanks to all of you for being here. I do feel my strength returning ............... I think my prayers were answered when I found this site.

Love and Hope to all of you as we take this journey,
Regina

concernedwife · New User Joined: 25 Aug 2008 Posts: 6

Regina,
I am so sorry that you and your husband are going thru this, I also know the pain and anger that that you feel.

When my hubby went to Dr for cough and weight loss in Jan, we were told it was the flu and there was a spot on his right lung, but not to worry it was just scar tissue ! Dr gave antibiotics and sent us home. Many tests, a new Dr and 3 months later we find out it is sclc,with mets to bone and my hubby now weighs 124 lbs. (he used to weigh 205) .

I also find this site a comfort and very informative, my only wish is that there would be no need to have this site.

Just wanted to let you know that you are not alone in your journey. I will keep you in thought and prayers.

__________________

Husband diagnosed with sclc- April
beginning 5th round of chemo

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Hi Regina,

Welcome to this community. I'm very sorry about this diagnosis for your dear husband, but you will get much support and understanding from those of us here. We'll give you as much information as our collective knowledge allows.

I could have written part of your post about the weight loss! We had done WW together and started climbing back up again, so my husband was taking steps to lower his weight again. Eighteen pounds later --- whoda' thunk it was Lung Cancer?

I'm also a member of the Insomniac club and acquired that nice perk during my husband's illness. He also had trouble sleeping, the mind starts spinning at night. Talk to your doctor about something to help you sleep because you've got a long, tough journey ahead and you'll need all of your reserves. Have to keep the caregiver healthy.

I hope John's spine met pain is able to be controlled and look forward to hearing more from you.

Rest assured, we are here. None of us want to be and we're all in various stages of the fight and for some of us the battle is over, but we are here for you.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

mybestfriend · New User Joined: 29 Sep 2008 Posts: 6 Location: California

Dear PBJ,

You always seem to say the perfect things...... I read your story before I joined the Forum and you were one of the reasons I knew I had found the right place for friendship and support. I hope that I can be as strong and help others with my posts.

Some of the stories are hard on me because I realize that I too will have to face the particular things that are going to happen as the disease progresses. Sometimes it makes me cry just to imagine that we have so much more to look forward to.

John had a tough night last night and he is so worried about me that he won't wake me when he is uncomfortable. Then the guilt sets in because I have not felt him tossing and turning. When I ask him if he has pain he says "just a little". He is on a 25mcg Fentanyl patch which we now change every other day. I have the 50mcg in reserve and it may be time to use it today when we do the change. We also have Percocet for in between if he needs it but he generally will say he just needs a Tylenol. He is not a complainer and that will be a problem as we go along. I want him to be comfortable and not suffer when he doesn't need to.

I don't want you to think it is all "doom and gloom" here .......... he still has a great sense of humor and writes emails to his grandchildren as needed so they will not worry. He does worry about me and what will happen for me in the future. I have tried to reassure him but I know he is still concerned.

Thank you again for your kind and helpful words. I was brought up with the understanding that "God will only give us what he knows we can handle". John and I do have a strong faith and I am sure we too will be held up by HIS strong hands!

Hugs and Strength for all of us,
Regina
_________________
Husband diagnosed 8/14/08 with nsclc with multiple fractures in his vertebrae. Chemo started 8/21 and radiation 8/28.

bnot · Posted: Tue Sep 30, 2008 4:09 pm Post subject: Re: I know I am not alone.......

Welcome to the very best cancer forum on the internet! Sorry we had to meet you under these circumstances.

I have been here close to 2 months, and we still haven't got a biopsy that tells us what we're dealing with on my 95 year old Mother yet!

So all of this is rather new to me too. I'm slowly learing some of the terminology. I too, need a cancer terminology book!
_________________
In 08/08, they told my 95 year old Mom she had 2.1cm lump in her lung. After cat and pet scan, one doc said its spread to the lymph nodes around her aorta. First biopsy, doc said it was cancer, pathologist said not enough tissue. Second biopsy it showed negative for cancer!

LizNDale · Posted: Wed Oct 01, 2008 12:03 pm Post subject: Re: I know I am not alone.......

Hello Regina,

How glad I am you found this forum, a wonderful place with some wonderful people.

I am so sorry about your dear husband, I get real good feelings about your marriage when reading what you've written. It is obvious you have so much love for each other.

You'll be in my prayers and thoughts, my heart goes out to you.

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

Kaya5671 · New User Joined: 24 Sep 2008 Posts: 8 Location: ISRAEL

Hi Regina,
I am, as you are, a new member as well. The love of my life, only 47 years old was diagnosed a week ago with stage IIIB NSCLC. I feel for you so much,it is such a shock you just don't know what to think. I am also preparing for the long, difficult and heartbreaking journey ahead of me. I read the posts here and can not imagine my boyfriend being like that.

I hope we can all stay here and support each other while we go through this horrible tragedy and just pray for a miracle. I keep imagining that some wonder drug will be discovered within the next year and will make all our dear loved ones healthy as horses.

Praying for a miracle,
Kaya

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