Hi Everyone,

Well, today we reported to HUP at 6:15 am for surgery. We were both nervous but Clark was very, very nervous as he was prepped. They started at 8:36 am and it is now 12:35 pm. No updates yet but I just HAD to write and relieve some anxiety.

This is BIG! Ten hours. Good news though--no trach! To pass the time, I ate breakfast in the caf, took a long walk around Penn's beautiful campus (jeez, I feel so old around these college kids), ate lunch, surfed the internet. Time is moving at a snail's pace.

I created a Care Page through Pen's website so that I can keep family and friends updated on Clark's progress. Great idea since it should cut down on the phone calls. If anyone is interested in seeing it, send me your email address in a PM and I'll send an invite.

Not only are they rebuilding Clark's jaw (result of ORN), but they are going to loosen up things so that he can open his mouth wider. That is very exciting.

Thanks for listening.

Anita

Hi Anita,
I don't know if it is open on Mondays, but the museum around the corner on Spruce and 33rd or 32nd is an intersting place to kill a few hours. I think it is open until 4. Also has a cafeteria but it is expensive if I remember but I think you can get a glass of wine. Nearest bars/restaurants are over on Chestnut Street north.

Two hour delays getting surgery started at HUP seem to be the norm. I hope you have someone with you to help kill the time. The one thing they didn't give me last time I was in was a wash cloth and soap. They use those wipes and I hate them. You might want to bring some when you come back tomorrow.

Take care,
Eileen

Eileen,

Arrgh, the Museum is closed on Monday! The wash cloth and soap tip is a good one. Thanks. Who was you surgeon down here?

Still waiting for someone to update me Clark's progress.

Anita

Hi Anita,
My last surgery there was 2001 so maybe they now give out washcloths and soap, but I doubt it. My surgeon is Dr. Chalian.

Waiting has got to be a bitch. Are they at least giving you updates from time to time? My surgery was 14 hours and I didn't get to ICU until after 10PM. They also had no time to clean me up in OR so nurses tried the best they could. All I wanted the next day was a shower and to wash my hair. After a total laryngectomy and ND, that is tricky business but I did manage it two days after the surgery. Make certain they have a room ready for him before they move him out of his bed in ICU. I wound up in a hallway for 5 hours because they didn't have a room available.

Can you leave a cell phone number and go find some dinner? The White Dog and the Terrace Tavern on Chestnut are good.

Take care,
Eileen

Clark's surgery went well and he was discharged Saturday a week ago. The swelling on his jaw is decreasing and managing pain is the key to keeping his spirits up. He is using his PEG for most of his nutrition but does nibble a little on soft foods, ie pudding, and milkshakes.

The donor site (right leg) is also very sore. He gets around some with either a walker or a cane. His sutures came out on Wednesday. I think when the swelling goes down, he will feel better about how he looks. Unfortunately, he was quite surprised when he saw his reflection for the first time post surgery.

I think he looks very good. Still the handsome guy I fell in love with 16 years ago. The surgery was only 8.5 hours, far shorter than the predicted 12 hours. Our days are busy with managing pain, dressing changes, feeding, personal care, and follow up appointments.

The PS says that swelling should resolve in under 6 months. I am so grateful that this procedure was available to my husband. It will take time to complete the recovery, but the promise of improved form and function is well worth it. For now, we're taking one day at a time.

Hi Anita,
Glad to hear the surgery was a success and his recovery is coming along. Here's wishing him a speedy recovery and keep us posted.

Take care,
Eileen

Thanks, Eileen!

Anita

Hi Anita. I'm so glad to hear that Clark's surgery went so well. I hope each day he is feeling a little bit better.

Hi Wanda,

Thanks for following along and for your good wishes.

At last weeks appt. with the Oral Max, we asked about this crunchy sensation in Clark's face along one of the suture lines. I noticed it when I was applying some bacitracin. They told us it was an air pocket and would eventually close up on its own.

So today, we noticed some whitish yellowish discharge on the same suture line but lower. When Clark is talking or drinking something, ie moving his jaw, there is more of this stuff so that it is drippy. He is on Bacitracin 800 mg twice a day. He doesn't have a fever but I'm getting a little worried. He still has that crunchy sound in the soft tissue.

I plan on calling the PS tomorrow but wanted to see if anyone has ever had this happen to them. What do you think?

Hi Anita

I'm sorry to hear that Clark is having ongoing problems. The whole process is difficult enough without any additional dramas.

I haven't had any experience with the crunchy sensations but I did have to deal with a small area on my suture line that had an ongoing weeping discharge. I was treated for an infection and kept on different antibiotics for about 4 months . As it turned out, it was one of the small metal plates under my skin supporting and shaping my new jaw bone that had to be unscrewed and removed. Once that plate was removed, the area then healed within a few days and I have had no problems with that since.

I would definitely contact your PS. If Clark has the metal plates, it might be one of them causing the discharge.

Karen

Hi Anita...wish I saw this thread sooner. I went to HUP also and have since changed to Fox Chase Cancer Center. I'm happy that the surgery didn't last as long as expected..that is good. Does your husband have another appointment soon so they make sure everything is ok? I just hated the parking there...I ended up following people to their cars...lol

Good luck and hope to see update soon:)

Where did you park Suzanne that you were so scared? I park in the Penn Tower Garage. They also have valet parking at the front door of the hospital which used to only cost a few bucks more. I haven't used it in 12 years so it may be lots more now.

Eileen

I wasn't scared at all...just no where to park...the only way I could find a space was to follow someone:)

I spoke to the PS today and since Clark does not have a fever or chills, this is not an emergency. We're going in on Wed. to get a culture and then some more antibiotics.

So tonight Clark is having some homemade chili (very mild) that I pureed. He said that he hardly has any taste. Is this from the pain meds? Before this last surgery, he had gotten about 80% of his taste back after radiation. This surgery did not involve his tongue so I am puzzled by this. Will he get his sense of taste back when he's off the percoset?

RE: parking--I also park at Penn Tower and now that the Perelman Center is open we can park there as well. I can always find a spot if I go to the top deck (Penn Tower) where most people don't want to be exposed to the elements.

I park on the Lobby Garage level and there are almost always spots. The parking in the Perelman Center is a nightmare so I park at Penn Tower even when going to the Perelman Center. The maddening part of Penn Tower is if you are on a level that hs no parking, the only way to get up to another level is to go all the way back down to the bottom and start again. Who the H designs these things?

Take care,
Eileen

I totally agree about Penn Tower....I don't go to Penn anymore so I don't have to worry about that. But that parking garage is crazy!!! You can only go up...madness

We went to the PS yesterday and he did a small procedure to re-route the drainage by putting in a small rubber drain and some additional sutures. No need for more antibiotics. I can remove the drain on Sunday. Then we see him again on Thursday.

As for parking--we opted for the valet at Perlman. That was the fastest appointment we have EVER had at HUP. We were in and out in half an hour so the parking was easy and didn't burn a hole in my pocket. That new building is so beautiful! They have a nice coffee stand there, too.

Hi Anita. Glad the appointment went well. Continued prayers headed your way. Hugs

WOW!!!! A half hour at HUP?! That is good.

Glad to hear things went well...keep us posted.

Anita,

sorry I haven't checked this thread sooner. I was going to say that the sight just sounds like it's drainage which occured after my surgery for a little while.

My donor leg still hurts from time to time and I don't have the strength in it I used to...but then again they had to take a lot of tissue to rebuild the inside of my mouth so he may be spared that.

The swelling takes months to come down...my jaw was wired shut for months to keep my teeth aligned so there was no chance for food for me, which is why I lossed over 40lbs afterwards (70lbs total from tx/op). I've seen so many people with the fibula replacement and they look absolutely the same afterwards...or very close. If you do a google search under Dr. Neil Futran (my surgeon) he's got a few U of Washington MC videos online where he interviews a gal after her total recovery, and she looks great.

Mine...well let's say I had other complications and got hit with the ugly stick, however my last surgery to repair my facial nerve should correct much of it.

Good luck, keep spirits up!

Eric

Hi, Eric,

I just watched the video of your Dr with his patient. I really enjoy seeing the HOW on this type of surgery. So interesting. And she does look great. I noticed that she did not have rads.

We had a marathon day with 3 appointments. The drainage from the wound has slowed down some. The PS is optimistic that this will resolve when the flap meshes completely to the radiated skin and surrounding tissues.

Clark developed a sensitivity to topical bacitracin as his skin is red, itchy and a little puffy. Discontinuing that.

The Oral/Max said at least 4 to 6 weeks before Clark can chew. He lost his sense of smell and taste which the OM thinks may be that the tube they put in his nose and throat irritated a nerve. He called it a common complaint after surgery. Clark is very worried that taste and smell won't return.

When I change the dressing on Clark's donor site, I notice that some of the new skin comes off even though I am using the non adhering petrolatum soaked gauze. The PS said that it is not unusual. If the gauze is sticking to the wound, he takes his shower with the gauze on, and afterwards the gauze peels off really easy. Then I redress the wound.

I did see your pic on Facebook. Your look so young! Thanks for writing. Take care and keep looking up!

Anita

Anita,

Remember they caught her cancer early...your husband and I are T4's, early stage usually means less invasive surgeries and easier treatment options. Nerve damage is tricky, make sure you ask pressing questions there...you'll learn that sometimes unless pressed your dr's won't offer up important information.

I'm allergic to a host of antibiotics, so that's not an uncommon thing to me. As for the looking young...well as I say I have a baby face...a curse when younger a blessing as I've aged. If this facial nerve surgery works for me I'll soon look as young and handsome as I did prior to treatment...or one can hope.

Keep the Faith as my friend Charm would say, Good luck

Eric

Eric,

It is my understanding that when cancer is detected in the bone, it is automatically Stage IV, with the standard of care surgery then Rads. Wasn't Coogan's cancer also in the bone? Why wouldn't she have had radiation?

Just wondering.

Anita

Anita,

Radiation isn't a must, it is the big gun in the room that can only be fired once...35x or so but you get my meaning. Her tumor was small, originated in the jawbone itself and she didn't have any metastisis.

She had two different types of chemo treatments, before and after surgery, her surgery was done by one of the best surgeons in the country...why have rads? The only reason to is to lessen the chance of a recurrance, but then if you get a recurrance you don't have radiation to help you if it's agressive.

My primary was huge and I had a secondary stage 4 tumor in a local lymph with 2 other hot nodes...after chemo and rads I had responded well to it and was techically cancer free (below malignant levels) and was given the option of surgery...it wasn't mandatory. In fact Dr. Futran called me himself and said, "So it seems you may not need my services after all?"

Of course my ENT intelligently referred my case to the UWMC straight away, my tumor board was held there and Dr. Futran's team set out my treatment plan for my local team to follow. So I'd been using his services all along. But I chose the surgery to repair my jaw, as it was severely damaged and to remove all of the damaged tissue plus lessen the chance of a recurrance...no one could've predicted the facial paralysis that occured due to that surgery.

Sorry...ramble, hope it made sense.

Eric

Well, here we go again. The drainage from the wound has returned in a new location. There is a small hole in the suture line right over the area that had/has the crunchy sensation (crepitus). It weeps continuously. Pinkish white color, no odor, no fever, no chills. Fortunately, we see the PS on Wed. for a follow up. Clark is so frustrated with this new thing. He is worried that the plate is causing the infection. Still has lots of pain in his jaw. The percoset helps. He is just getting tired of it all.

Just needed to write this down.

Hi Anita. I think of you often. I'm so sorry that things are not going better and Clark is still having difficulties with his healing. Hang in there and I will keep you in my prayers.

Thanks, Wanda. I can always count on you for understanding.

Vent Anita, that's what these forums are for. I highly doubt that the plate is causing the infection. I did have an area that just would not heal, had granulated tissue and continously wept for almost a year after surgery. I had a minor surgery from my ENT to remove a piece of the plate, 3 screws and he cut out the tissue that wasn't healing....haven't had an issue since.

I did have to have a skin graft to replace the tissue on my last surgery due to where the original tissue was taken. It was further disfiguring my mouth, further pulling it down due to the lack of tissue in the area. It looks better now and if the nerve graft takes then I won't have much evidence of it even being an issue.

I'm still worried about Clark's mental state, this isn't an easy path he's been set down...but it's his path, he's got to walk it. Occupy that mind with anything as long as it's positive...really though talk to your physician about anti-depressants. I don't think they are the answer everytime however I do think that you should have every tool available to Clark to keep him "in" this fight.

Good Luck

Eric

Thank you, Eric. It is so good to hear similar stories about recovery. While I am not celebrating your bumps in the road, they give us a common bond. It is less alienating.

Clark has also had some nerve damage in his left shoulder. The blood vessels for the new flap were grafted along the clavicle. The result is that his shoulder has lost some muscle tone, is numb along the top and his arm/shoulder movement is restricted. We saw his regular Dr yesterday and they took an xray. Results tomorrow. Dr wrote a script for physical therapy. The nerves may regenerate OR this could be permanent. We'll see.

This morning, Tyler Florence was on Today and was preparing a crown roast of pork, one of Clark's FAVORITES. He said to me, " Someday, I'm going to eat that again. I am not going to let this cancer defeat me." That's right, baby, put of your dukes and fight. You show 'em who's boss! We had a good laugh and he was smiling one of the biggest grins I have seen in a long time.

He wears Polo cologne and today he could smell it a little more. Up to now he didn't smell it at all since this last surgery. I will keep vigilant regarding his mental status. He vascillates from frustrated to resigned.

We have a visit with the PS tomorrow. He going to have to answer a LOT of questions.

Eric, I appreciate your support and interest!

Anita

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!

Christine,

How long did that stabbing pain last? Or are you still having it? Clark has been taking Percoset but that really doesn't help with the jaw pain. I will check into Neurontin. He had that during Rads for mouth and throat pain.

Take care,
Anita

Anita,

I believe 60 dives is max but I'm in no way an expert. I'll look you up on Facebook...keep your chin up, we're here for you.

Anita, I'm Eric Statler on facebook www.facebook.com/eric.statler

i just tried looking you up on FB and wound up with 130 matches and none in Media, PA

I just sent you friend a request through your facebook page.

Anita

That sounds very similar to the dramas that I was having. The gunk was weeping out from the suture line on a small area of the skin under my chin where the small metal plates are screwed in. The skin was so thin over that particular area of the plate and eventually is became exposed. It was only then that they realised it was the screw and that plate causing all the trouble and not the reconstructed bone or anything else.

Once that plate was removed during a very short surgery, everything improved, the weeping stopped and the skin finally knitted perfectly.

Karen

Hi Karen,

I remember your issue with the small plate. Clark has just the one big plate. They can't remove it but you make a good point about the metal being the cause if the leaking. I agree that this is likely. The PS certainly will have to figure out how to correct this. Thanks for reminding me of the metal thing.

Ive had 85 HBO dives so it cant be a max of 60.

I still get that pain and my operation was Aug 24, 09. Every couple weeks I try to not take the nurontin and end up realizing I have it for a reason. I still have the 50 mg fentanyl patch and hydrocodone and oxycodone also for break thru pain. At this point, I only take the last 2 meds if its a really bad pain day.

Hi Anita. I'm sorry things aren't going better. Find me on Facebook - Wanda Buchanan Motsko

I didn't realise that Clark has one large plate. I remember how frustrating and upsetting it was to have to deal with that weeping and fear of infection everyday. I was on and off antibiotics for several months. The surgery in itself is a battle, let alone any further trauma.

I hope they get to the bottom of the problem and resolve it asap.

Karen

You do 60 , which is the normal, but they can give you more HBO dives. It's up to the Dr in charge of the Hyperbaric Unit.

We went to the PS this morning. There is a significant amount of granulation in the two small wounds on the suture line. He used silver nitrate on it which will shrink the granulation. He wants us to keep the area moist, no scabbing, so that whatever is in there can come out. Otherwise, it becomes infected. I am so glad we saw him today. He said this is not unusual for radiated tissue. It takes longer for the tissues to bond around the metal. Going back in two weeks.

EZJim, he confirmed what you said that the number of total dives is up to the HBOT Drs. But we aren't going there yet.

The intermittant stabbing jaw pain that Clark gets could be related to nerve damage. It may resolve or...we'll handle it.

On the way home I needed to stop into the grocery store to get a few things. Clark came in with me and was choosing foods for himself. This is big. He had no real interest in eating since his surgery in November. The appointment definitely made him feel so much better.

The sun is shining and it is going up to 40F.

Anita

Hi Anita. Sent you a Private Message on Facebook. Glad to hear you got some answers to the issues. Hang in there.

Anita, I still have on whats called a wound vac. Its to help heal what had been a large hole below my ear. The wound is in a very odd place, not my jaw but not really considered my neck either. Anyway, the wound was a hole that had been the size of a quarter and 1/2 inch deep. The wound wac is helping to suck out the gunk and keep it infection free. This might be something Clark could benefit from. With the help of this machine (which is a big pain in the butt!!!!) the wound is now about the size of a q-tip tip.

This type of surgery sucks!!!!! I ended up having the first flap fail. My docs actually put leeches on me to get it to work. EEEWWWW !!!!! I was kept asleep so didnt know about that part. The recovery is such a long road. So many areas of the body are affected that its not just one thing that needs to heal. I still have the marks on my legs where skin was taken to put on my arm. Luckily they have stopped hurting. Tendons were taken from my arm and that still gives me problems. I was told it will take 1 year to recover from this type of operation.

Wishing Clark an easy recovery.

Christine, you are one tough woman. I have read most of your posts and what you have been through amazes me. Is the wound vac on all the time? The other day my heart broke for you when I read about that awful man. He's just a flea on the butt of a dog. What a creep!

Thanks for the tip on the vac and for the FB connection, too.

Anita

Both you and Clark are just as tough as I am. You both probably dont realize it yet. Just look at your signature, shows he has been thru the wringer with you right by his side. Not an easy road.

Yep, the wound vac is a noisy pain in the butt, although it is very helpful, its an annoyance.

It took me a few seconds after my initial shock before I could even think of something to say. To me thats like kicking somebody who is in a wheelchair. I have a handicapped sticker on my car and you can tell Im ill just by looking at me. What an idiot to actually have the nerve to laugh and make fun of me. His poor wife!!!!

Clark is about 3 months behind me with his operation. My jaw is steel or some type of metal. Im glad my leg wasnt used. Does Clark have any trouble with his leg? Hows the swelling? There arent many who have had their jaw rebuilt.

Hi Anita,

I'm sorry that I can't be much help on this. I just wanted you to know that I check this thread to see how you and Clark are doing. I'm happy to hear that your visit to the doctor was a positive one.

Things are moving in the right direction. Clark still has 2 small areas that are not healing. We will address this at our next appt. but I do have some observations I want to run by others.

First, I had read about Vigilon on another post here and wonder if this is something that may help with Clark's small wounds. Twice a day, we are putting an antibiotic ointment on the openings, then cover them with bandaids. While it is not getting worse, it isn't getting any better either.

Second, my husband is tasting more foods now. He gets this stabbing pain every time he coughs, moves his mouth or tastes something. He is not chewing yet. I was wondering if his salivary gland is the cause. You know how something tart, like lemon, can make your jaw hurt momentarily, knifelike, as the salivary gland responds to that stimulus. Since he is just now trying and tasting foods again, could it be the body's response to an unfamiliar stimulus? It has been months that Clark has really eaten anything.

It's possible this is nerve damage, too.

Christine� Clark's leg is healing very well. The original dressing was an ADB pad (4x6) with an ACE. Now, it is a small 2x3, no ACE. He has no pain and very little swelling. He moves around normally. He's been getting out every day now, too.

Suzanne� Thanks for checking in.

Anita

For Clark's wounds, I would stick with the antibiotic and a bandaid. This will help the wound heal better and keep it from getting infected.

The stabbing pain in the jaw sounds like what I get. For me, its from the surgery and it has improved. Time will make it better.

This surgery takes a very long time to recover from. When my visiting nurses checked into my feeding tube info. The insurance company has it estimated at a 1 year recovery time. Ive had 3 of my doctors tell me the same time frame for everything to heal. I still have alot of swelling which probably will not shrink much more. My jawline will require liposuction to correct my appearance, it isnt eligible to be done til after the 1 year point.

As far as the areas that are not healing, are they deep wounds? Thats how I ended up with a wound vac. Ask your doc if that is something that would help Clark.

As always, wishing Clark a painless and complete recovery.

Hi Anita,

Just wanted to let you know I'm thinking of you and wishing Clark comfort soon. I wish there was more I could do. Christine is here so that is good!!

Hi Anita,

There was a medicine that my wound care doctors had me apply to an area on my chin that wouldn't heal...and for the life of me I can't remember the name of it. But between that and the hbo treatments my wounds started to heal nicely.

I have the same pains in my jaw sometimes too..I also get wicked neck/jaw cramps.

It sounds like Clark is progressing better...and that's great

wow, yall have been thru so much. my daily thoughts are with you and clark.

its post like these in this thread that put me in check, realizing that the complications that andy is having are so minor in comparison to some of the things that others have endured.

i take my hat off to all of u that have gone thru hell and come back to inspire and support the rest of us.

We had a marathon day of appts. on Thursday. The PS says that the two small areas that haven't closed yet actually look good as they aren't leaking anything now. It will take months for this to close up. The one opening is a small hole. We have to keep putting on ointment and a bandaid.

The Oral/Max liked Clark's progress, too, but did say that chewing is still months away. He can eat soft foods but nothing that needs real chewing. They did an xray and we can see the fibular bone sections. Wow--lots of screws!


As for the stabbing pain-- could be from the salivary gland. Since Clark is 2 years post Rad, the salivary gland is just now pumping out a lot of saliva. Rad scarred the gland and the ducts so that saliva is being forced through a smaller and rigid duct into his mouth, and the adjacent muscle spasms. When he sips water or milk (which is cool), the muscle relaxes and the pain goes away.

This might improve with time. It may be that he will have to adapt to it. This morning, Clark tried faking himself out by closing his eyes before he put a bit of food in his mouth. The pain was less. Anyway, for now eating is still not pleasurable. But he may be able to control this in time.

He starts PT on Tuesday for nerve damage in his Rt shoulder. We have been getting out a lot more lately and his energy level is returning slowly. I also notice that his spirits are better, too. I see his laughter returning and that is the best.

Anita

That is so nice to hear Anita. I can imagine how wonderful it is for both of you feel some happiness coming back. Our moods can make such a huge difference it's just hard to get there. I hope everything continues to get better with time.