Michaelii, there are tremendous words of wisdom and many good vibes being sent to you and Seth. Just be open to them. And some of us would really like to visit a lodge in Northern Calif., so get going guy, and start getting well. Amy

It is hard to express the love and compassion I have for all of you already.

Thank you sincerely for every kind word and expression of hope.

Today my Parents went to Stanford with Seth and I to present to the tumor board.

We learned nothing new.

They echo'd the choices and said there is no right answer.

Based on this I have scheduled the surgery for Weds (again) regretting that I have wasted yet another week.

In the meantime I am reviewing the particulars with MD Anderson in case they have a firm opinion against the surgery.

If not, then I plan to move forward to save precious time, and then seek radiation (& possibly chemo, Erbitux, whatever) elsewhere since Stanford is 4 hours away it really makes no sense to go there. Texas, NY, etc are the same by plane, and I am not convinced they are the best for post-surgical care.

I am worried about my family and Seth. Today there was a TON of tension. Everyone has been trying to be on their best behavior but I can feel it unraveling a little on the fringe.

It creates stress for me that I know hurts my prognosis, but at the same time I want to minimize everyone else's pain.

This may sound egocentric, but I have always been sort of the glue of the family. Everyone looks to me for guidance, direction and leadership on almost every issue. I am the type that's always trying to keep harmony.

It's a role I have always enjoyed. Now, I feel like I'm stepping down and things are kind of crazy.

Seth is having an especially hard time and we haven't even started the REAL BATTLE yet!

He is naturally annoyed by my parent's sudden omnipresence, my lack of focus on other things like business, and my in ability to fuction at my normal 110% level.

Are there any suggestions for him? I am really worried about how his is taking all of this. I am going to need him to be strong enough for both us to get through this.

If anyone want's his email address, send me a private mssg. I think if he started participating on this forum it would be a valuable resource.

As always, your thoughts, ideas, comments and questions are welcome!

Michael,

I think it would be helpful for Seth to familiarize himself with this site. There are many caregivers who post here regularly and can offer a great deal of advice and support. Without a doubt, being a caregiver in this situation can be very stressful and frustrating, and there are resources here that can help to alleviate the pressure. I would also recommend that some of your other family members log on here to get a fuller understanding of this disease and the treatment options.

I have to agree wholeheartedly with Barb's post above where she advises against "saving" something for a recurrence. My cancer team pushed to do everything possible on the first go-around, as my tumor was showing signs of aggressiveness. The surgeon removed many lymph nodes during the neck dissection/partial glossectomy (fortunately, biopsies of the nodes proved 100% negative for cancer), and I then had 7 weeks of radiation followed by brachytherapy. None of my doctors wanted to be in the position down the road of knowing that they could've/should've doing something sooner. After 16 years without a recurrence, I certainly can't second-guess their decisions.

Cathy

Dear Michael

Your love for Seth shines through in your posts. My view is that acceptance is the key for coping. Not everyone can come to that stage quickly but when it happens we can move forward.

I gather from this site that often the cancer journey is harder for the caregiver than the patient. Many caregivers here will offer support to Seth if he wishes.

I'll be thinking of you next week and send good wishes as you begin your treatment.

Love and light from Helen

Michaelii,
I think you will find this web site very helpful.I know I have.My boyfriend of 20 years Jerry was Dx in late May.He has a pot and a peg.He had his 2nd rad tx today.He will start chemo in July.He lost his job just as we were finding out about the cancer, then my mother ( who has vascular dementia)came live with us.The last few weeks has been fun and games.Jerry has a positive attitude and refuses to worry.Thats left uo to me.I myself am disabled( LPN for 17 years)I have MS.I have my moments of depression but I get over it.I take one day at a time and think positive.What else can I do ? Sit down and cry hell I dont have time.I do have a close friend whom I talk with daily and she helps alot by just listening.I log onto this site every few days and learn something everytime.We know what to expect and we are ready for it.HANG IN THERE

Karen:

I am so sorry to hear about Jerry's diagnosis.

Please keep us all posted on the progress.

LPN? What does that stand for? Is your MS relapseing?

And your Mom? How is vascular dementia different than dementia? Does it affect her lungs?

Sorry for the questions. I send you my best wishes for health to all of you!

- Michael

Michael, in our town the hospital (small town, we have just one) has a support group for care givers. You might want to have Seth look into that. Having been the care give twice before being the patient, I know it can at times seem almost overwhelming. I had a circle of friends who served as my support group, but even better is a gathering of people going through the same thing.

I am very glad you have opted for the surgery. Don't worry about the small delay. This stuff is nasty, but not that fast.

I cannot know the dynamics of your family situation, but it might help if you all sat down and you told them that for the next few months, you are going to need to concentrate on yourself, but that when you are through treatment, you can resume your former role in the family. Or something like that, just so they know the change for each of them is only temporary. They might also be very scared by the word "cancer" and not be thinking positively about your very good chances of survival. In case they have come upon the same statistics you earlier quoted, you might explain how that is not a good indicator of how you will do.

One guarantee, however, is that once you have definitely committed to a course of action, you will feel much better emotionally.

Hi Michael, I am not in a position to offer any information about the cancer, but I want to let you know that I hear your fear and confusion. I am sitting here on the other side of the planet and I am sending you as much good energy as I can, lots of prayers and strength. These people on this forum are amazing, and a Godsend. You have come so far through life, and gained so much, keep up the fight ....

Hello Michael,

Glad you now have a treatment plan. The battle begins!!! There is so much good advice posted above I just wanted you to know how many of us are pulling for you. So many of us were at the same stage you are now. We got through the treatment and you will to. Good luck on Wednesday, I'll be thinking of you and hoping for clean margins and a speedy recovery. Keep us posted and ask any question you can think of. Someone with similer treatment will respond.
Also measure your progress in weeks not days.
There will be light at the end of the tunnel, It may take you awhile to get there but you will.


Danny Boy

One of our neighbors is a breast cancer survivor who recently completed her chemo.

She looks 10 years older than her age, moves real slowly and has trouble focusing.

Last month she was really in pain from peripheral neuropathy.

Despite these struggles, she took time out to come by and give me a hug and tell me it will all be ok.

We cried and talked and complained about the "bad luck" we got dealt.

It was nurturing.

Today. my sore throat is getting worse, headache, and earache too. Guess the tonsil tumor is getting agressive in there!!

Now my chest pain hass moved to right back side of my chest and I'm scared to death it's met'zd to my lungs.

Really wishing I'd had the surgery this last Weds. now. :-(

Oh, well...Maybe I needed to have this pain to appreciate the pain from the srugery more (LOL!)

The person who worries me most is Seth.

He is in denial still I think. I don't want to bring him down since we both need to really focus on keeping our business going, and I have been almost no help lately.

I feel paralized by this whole thing!

Usually he can count on me to handle every thing from big issues to the most minute detail. I know he is frustrated and that sometimes makes me upset because I think he isn't taking this seriously enough.

I know how damaging stress is when one has cancer, so I am really trying to ignore it, which upsets him more :-)

Seems petty in the scheme of things currently, but I KNOW I am going to need him more than ever before to have any hope of pulling through this.

Does anyone have any books, tapes, or other resources they could recommend that might help him deal with this?

I feel measurably better being able to discuss on this forum, and am trying to convince him to become involved too.

- Hugs to everyone...

Michael