Bob & Laurie,

I am glad to see you have completed treatment and are now headed on the road to recovery. Life will get back to a point pretty close to where you were before the nightmare started. Before you know it, you will have many weeks between doctor visits with nothing to worry about. After a bit over a year I realize each time I leave the doctor's office, I can relax, sleep easy and marvel because there is nothing to worry about for 8 whole weeks!

There will be some rough bumps in the road but hopefully they will be spaced farther apart and you will get used to them.

I am hoping and praying all of your visits this week go well and you get the best possible news.

Ed

While there is never a good time to receive a cancer diagnosis, Bob's cancer was found after we had been married for only 2 1/2 months & just 3 days after we returned from an incredible Germany honeymoon. While cancer has already taught us some life lessons, it has also put pressure on our newlywed status. Our relationship is solid & we were committed to one another long before we professed our marriage vows. But some times I have to wonder why couldn't we have had a few months to get adjusted to living together & get used to just being married. Don't get me wrong, I love this man o' mine & even if I knew on March 27th what our future would hold, I wouldn't have changed a thing. I don't think I would ever be prepared for what we've already gone thru & what the future may hold, but sometimes I have to wonder. We will see each other thru whatever the future brings, but, like all people living with cancer, Bob deserves alot of happy days in the future. May everyone here be granted many, many happy days!

We just celebrated our 4th wedding anniversary and two years of that time has been dealing with the big c. It has made a huge difference in our closeness and has stripped away many of the unneccessary issues. Life is very rich today. Our adult stepdaughter lived with us for our first year of marriage and that was a lot worse then the cancer :p

My mother passed away 2 weeks after we were married, 3 months later my oldest son (12 at the time) literally showed up on the doorstep, 5 months later I was diagnosed with very active Hep C, 5 months later I started treatment for a year (from hell), 5 months later I was diagnosed with Stage IV SCC. I know my wife deserves more than a few weeks of bliss but unfortunately it hasn't happened much more than a few spurts at a time. I don't know what the future will consist of other than shoulder surgery for me next Friday. I have learned to live for today but it is very difficult to encourage someone else to do that when they keep getting the short end of the stick. I know she said for better or for worse but I really intended for it to be a bit better than it has been...

Ed

Today we had our 1st of the 2 dr visits for this week. We met with the surgeon who is also the oncologist following Bob's case. Basically, he told us that the radiation did exactly what it was supposed to in removing the cancer at the base of Bob's tongue. (During surgery the dr was able to remove alot but not all of it)He is pleased with Bob's recovery thus far & arranged for Bob to meet with the speech therapist for some exercises to help restore full swallowing.

I read alot on this site about staging & finally asked today because I previously choose not to dwell on it. The doctor said Bob's cancer would be T1 N2b which he said would be stage 4? Then in the next breath he said he wasn't worried about Bob's case & that the prognosis remained very good. I saw one of Brian's posts from some time ago that mentioned a statistic that stage 3-4 oral cancers have a 23-30% survival rate. I guess I am confused. I realize the dr is probably not going to tell us his predictions & I have faith that Bob can recover fully from this, but that statistic remains in the front of my memory. Can anyone shed any light on this or help me with this one?

Hi Laurie, I expect more knowledgeable posters here will shed light on the issue you raised. I just want to share my own experience and views, hopefully to give you some peace of mind. I was diagnosed with stage 4B (T2N3M0)tonsil cancer 3 years ago. I never asked my doctors about prognosis because any people with common sense know that statistics do not favour advanced cancer patients. My doctor never gave me false hope, nor did he ever discourage me with pessimistic figures. There are many factors other than the stage that affect a patient's prognosis. The past record showed that some patients of earlier stage cancer could be defeated finally while those of more late stage survived the battle for a long time ,of course,there are more cases on the reverse. I can claim myself, for the time being, a winner of the battle but I really don't know how many more years I can live without the cancer revisiting me. But who knows? My oncologist told me he could not even tell how long he could live, so how can he predict how long I can live? The news you got from your doctor today about Bob's reaction to the treatment was already the best possible news you could get at this moment. There of course is a long way to go before a complete recovery, if there is one for cancer patients. I never tell people I am fully cured because cancer is famous for recurring. That's why close observation is a must. Statistics are numbers only and serve as a reference. To me, it they are of my advantage, I stick on that; if not, I forget them. Don't worry about things beyond our control.

Karen.

Laurie (Nicki, too)-

I am SO with both of you. I will continue to pray for good things as a result of treatment and for strength. I don't know who all is a caregiver but once treatment is over the caregiver has nothing - and it sure seems that way - to do but toe tap. We have no job except to start giving back the jobs our surviors had and hope that they will 1) be able to accept some "responsibility" for things like getting water 2) WANT to do those things to re-integrate/get back on the "original-role-they-had" in the family track once more.

You work so hard (as a cheerleader and nurse and liason and chaufeur - all by desire/choice) to GET to the end of treatment. You work to ease the burden of cancer for your survivor so all they have to do is fight for their life and you take care of the rest. Every day you go without sleep doesn't impact the next because you're pumped (scared, on a mission, whatever). That last chemo and/or radiation and NOW what?

Surprisingly, I was angry. Angry that there was nothing I could pro-actively do to keep fighting. Ed was SO sick. He could hardly move - never had surgery except to get PEG, mediport, huge chunk of biopsy of cancer site and 8 posterior teeth removed - the rads, ethyol, and chemo tore him up!

We're now a year out and our world is still very different that I anticipated/hoped. Don't know if that's how it is for everyone (and would like to hear from others - maybe in another post/topic), but even that part is scary. Where do you go from there? No question you love your survivor. How do you get "back" to normal or what is your "normal" going to be?

Sometimes I wonder what the hell I was smoking that I conjured a fairy tale/happy ever after scenario. Not happening yet but not giving up either. I am still convinced you/we SHOULD be encouraged. You should know it WILL be all right - just different. Depending on your ages and history (were you married before, do you have elderly parents, kids that live/don't live with you, are/were both working, etc.) your issues will vary and some will be simple and others not so.

Big thing, though. Trust each other enough to talk openly and VERY clearly about fears, plans, dreams, perceived obstacles to achieving harmony/security (which will be a biggie), take into account each other's perspectives. One lives in the moment and the other planning for more than today. I've made HUGE mistakes/bad judgement calls that affect many aspects of our life because I (over)reacted to fear/perceived attitudes... Poor Ed, he's probably thinks cancer is a better alternative to enduring my screwed up thinking.

Honestly, if I knew then (fresh out of treatment plus 3 months) I would never worry about "what if" from the cancer side - I'd be way more focused on determination to succeed in every way possible to regain "normal". The dilemma is how to stop the emotional momentum of then/dig in and force "normal" back into the picture.

All of us are so blessed. One day is one day more and before you know it, you had a lifetime filled with "life". Congratulations on the results and Nicki - you guys are going to be great, too!

S

Ken's surgical oncologist staged his cancer as T2,N2a,MO, which is Stage IV. He then gave us a better than 85 percent statistic for surviving this. I think a lot of the numbers depend on what type of treatment is given, and where, and age and health of the patient has to factor in, too. My husband is 49 and extremely healthy, so his odds would have to be much better than an 85 year old man with heart disease and other health problems. Perhaps that is why your surgeon was so optimistic about Bob's case.

Again, thanks to each of you for your post. It is 4:30am & I am getting ready to leave for a week vacation in Florida with my mom & siblings, but I had to get on this site before I left. I have been reassured & supported so much by all of you & this is only my 2nd or 3rd post! Bob does not worry about the #s or the staging & I will try not to also. He is much better at living in the moment then I am. We are starting to see signs of "normalcy" again in our lives & Bob is eating by mouth daily now. Yesterday we went out to eat. While Bob just got soup, it was still a symbol of our lives returning to a bit of normal life activities. Thank you again!