Anita

Although I havent posted on your thread, I wanted you to know I follow along with Clark's progress. Im always checking for an update.

Ive also had my jaw removed. I have a jaw made of steel. The first time it was done failed and a new flap was made from my pec tissue. This also causes me to have problems with my left arm/shoulder. My right arm has limited strength due to a large donor site for tendons.

Wishing you both happy holidays and most of all good health.

Hi Christine,

I have been following your threads as well. There are similarities between you and Clark. Did you have your surgeries at Lehigh? My sister lives in Allentown and when we pass the hospital, I think about you.

Clark has an opening along the suture line that weeps constantly. Some days it is whitish, some days has some blood. He is frustrated and worries that the PS put the flap too low. He wonders if this will ever heal. He still has sharp pain when he swallows or moves his mouth. He is restricted to soft foods. No chewing. The bone graft has to heal before he can chew.

We are going to see an orthopedic specialist for his shoulder and hopefully some physical therapy. Thanks for writing. You have been an inspiration to us. I have passed your entries on to Clark. You are a true warrior!

Happy New Year and continued healing!

Anita

Today has started out great! The weeping along the suture line has STOPPED! Yippee! Clark's attitude is positive and he is up and about like his old self. We are 6 weeks post surgery and things are looking better. He even wants me to take a picture of him. Wow, that is very BIG!

We spent Christmas with family and had wonderful time. Saturday evening, things really started to shift. He can see the light at the end of the tunnel. This morning, Clark even talked about going away for a week to a warmer climate where we can play golf. It is amazing how resilient we humans are.

After weeks of worry, I just wanted everyone to know how happy I feel.

Anita

Great News Anita...heres wishing you many more days like today!!

What a huge relief for you both, that is wonderful news.

Karen

That is wonderful to hear Anita!! That positive feeling cannot be replaced by anything. I have to tell you...I've had some ear pain and tongue pain and picture the C coming back and I've been worrying today. Reading your happy post and feeling that positive energy is great:)

I'm so happy for both of you.

Well, our good news was short-lived. Unfortunately, there are now three openings along the suture line on the new skin graft. They weep constantly--creamy white junk. I contacted the PS and we will be seeing him on Thursday. I haven't been on here much. A peek now and then at what's going on. I was hoping that we might have slipped quietly into the background as things seemed to have been moving closer to the old normal. Not so. I now know that doesn't really exist anymore. It is just so sad!

The eating issues are the same, too. Clark can't chew yet and even when he drinks something, he still gets sharp pain in his jaw. Brothy soups and milkshakes are doable. The PEG is still our friend. He does think his sense of smell is coming back. And then taste should follow. Still on pain meds but he has cut back a lot.

We have been very busy addressing other issues related to the recent surgery from November. Some are too personal, so I'll leave it at that. The cascade of events are very challenging but manageable. As if OC wasn't bad enough, there are these other things one could not predict.

To everyone out there, thanks for the support. We still need whatever you have to offer. This OC is so freaking tough! I haven't felt this way in a long time. I'm getting in a private crying jag while I am typing. I am usually so optimistic--just a bad day I guess. Sometimes I feel so helpless. I wish I could relieve my husband of some of these frustrations. It is so darn sad.

Anita

Anita,

Thanks for the update. The tricky thing with Clark is he's been subjected to radiation and that will make healing tough. I had similar issues after my surgery, I had a section of my face that would not heal and wept constantly.

This process is tough dear so cry when you need. I will say this though, you guys are tough enough to get through this. There are some solutions to Clarks issues too. I would ask to have Clark referred to a wound care specialist. These medical professionals have many means at their disposal to help irradiated patients heal. Along with Hyperbaric Oxygen Treatment there are several methods.

I went through 30 dives and then had to have minor surgery to remove the granulated tissue...the area looks great now. Believe it or not most of the white seeping stuff coming from that wound is sweat trapped in the area. I was surpised when my wound care dr told me that.

Since Clark has already done 40 dives it may be time for them to look at removing the granulated tissue and then close him up again. I know it gets tiring and you guys have been at this just a little longer then I have...but I can relate. It just seemed to be one thing after the next.

But he's still breathing and as long as he's alive there's always hope.

Thinking about you guys,

Eric

Im so sorry to see that both you and Clark are struggling. I can relate to the patient side of this as it is quite a long and painful road to recovery. I can also realte to your crying as being a woman, sometimes we just have to let it out.

One medication that works very well for the jaw pain is Nurontin. I know the jaw pain Clark gets. Its awful, a stabbing pain that can bring you to your knees.

Praying for better days ahead for both of you.

Eric,

It looks like the area that is oozing is right over the metal plate along his jaw. Radiation is a double edged sword--kills the cancer and damages the good stuff. I looked online for a long time the other night to see if there was a lifetime maximum number of dives for HBOT. Couldn't find anything. But we will look into Wound Care specialists. That's a great idea!

BTW I finally joined Facebook, too.

Thanks!