It has been a long time since I have posted but today seemed like a good day to get back into it. Clark had his PET scan on Wed. He is worried that they saw something because after the usual head-to-knees scan, they did a second scan on his head and neck. He has a bad feeling about this. As his cheerleader, I am inclined to believe that with the surgeries in November and April, there may be a lot of scar tissue and maybe some inflammation that make it difficult to see what is going on. Am I being naive? Is his gut feeling "the truth?'

We also went to a pain management specialist (anesthesiologist) to see if he can help Clark get control of the knife-like pain he experiences when he puts food into his mouth. Makes eating next to impossible. He does eat breakfast and swallows water and other liquids. So he is keeping that mechanism working. But this pain has become so bad that his willingness to eat other meals is all but gone. He WANTS to eat, but the pain is unbearable. He is concerned about his weight, too, not gaining anything. So thankfully he has the PEG. (I can't deal with PEG wars stuff anymore, so please resist the urge to comment here.)

In the middle of all this, we have moved out of our house in preparation for demo and rebuilding our home. That is a good diversion for Clark as he LOVES being the General Contractor. And he is very good at it. Unfortunately, the excitement of building our new home now has a black cloud hovering over it. He keeps saying, "If anything happens to me, then you should..."

When he verbalizes his worry, I respond with what I think is supportive and loving and his response is, "I don't want to talk about it!"

On the bright side, we have been spending lots of time golfing, sometimes 2 to 3 times a week. That is the another thing that Clark does well. And we do have fun together. I don't want to fall into a trap here but every time I look at him I can't help feeling that I MUST remember every day that we are living now. He takes lots of naps. Is that a sign?

We are planning a family trip to Ireland at the end of August for our nephew's wedding in Dublin. At first, I think he was looking forward to it. Now, he seems reluctant to go especially if this pain has not been controlled AND if he is still on the PEG. He desperately wants to be off it.

Of course, I WANT him to go. I think it will be fun. But that is MY perspective. I am beginning to realize that he MAY feel OBLIGATED to go because I have made such a big thing about this trip. He worries about health care overseas, and about having to use the PEG when everyone else is eating. I understand that and have changed my expectations. I actually told him that maybe he should consider NOT going. I want to let him off the hook, give him an OUT. I will be fine by myself, other family members will be there. I may even enjoy myself more. (Shoot, did I say that?)

I even encouraged Clark to call the H&N surgeon for his PET results but he said he want to wait until the appointment (July 7th). His neck is sore and I rub it for him. He is a fighter but sometimes I see the fight in him ebbing. I am a little worried.

Anita

Hi Anita

Im happy to read your update on Clark. Dont worry about the 2nd H&N closeup. Thats how my docs always had it done too. It was just their way of having a closeup of an area that is prone to problems. Hope everything turns out to be ok.

One possibility to Clark's behavior is that he is nervous about the scan. I know I get scared whenever its time for that to be done. There was a post about this not too long ago and everyone who responded also said they had anxiety over this type of test. It could also be his way of accepting his new life and realizing his limitations. That can be an awful thing to face knowing that physically you will never be your old self no matter how much you try.

The naps are normal too. If he is playing golf, that can wear you out especially in this heatwave we have had. He is also doing the contractor job which will make him tired. Gosh, reading about all that he does makes me tired

Its nice to see that you both are getting out there and enjoying real life together. Please post an update with the results.

Christine,

Thanks for writing. I can always count on you for reassurance. You have a knack for saying the things I need to hear. I'll post the PET results after the appt. I am going to start another post on side effects of Neurontin. Clark been on it for about 10 days.

Anita