Diagnosed last Monday (Squamous Cell -throat cancer)

Chefdaddy

Hondo said:

Daddy Mike
Just to let you
Daddy Mike

Just to let you know we are thinking about you. I know you might be feeling down with all the other problems you have going on at the same time as you are doing treatment, please just hang in there and don’t give up, there are too many people who need you my friend.

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

Skiffin16

Chefdaddy said:

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

Getting Closer
Hi Mike, just wanted to let you know we here supporting you. Even though you are going through a lot right now and it's very hard, every day down is another closer to bring finished with your treatment.

I know you have a ways to go yet, but soon you'll be at the half way mark and it seems to be a little more tolerable when you realize that you have less to go than you've already completed.

Hang in there bud and stay strong. You can pull on all of the strength of those that have gone through this before you. We've been there and we've made it through, you will also.

Keep the faith, God Bless
John

Skiffin16

Chefdaddy said:

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

Getting Closer
.

Skiffin16

Chefdaddy said:

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

Getting Closer
.

Hondo

Chefdaddy said:

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

Daddy Mike
I am glad to hear you are finally moving but greatly concerned over how you are doing.

Take care my friend

unclaw2002

ctfitztx said:

Squamous Cell Carcinoma - Base of Tongue - T1N0M0 - 57 y.o. male
I am new to this forum and would like to tell my story too so that others may benefit from my personal experience. I am a 57 y.o. white male. Light smoker, stopped over 20 years ago and very little alcohol use.

This time last year I had a persistent sore throat and went to the VAMC for an evaluation. My PCM referred me to the ENT clinic where I saw a series of ENT Residents (read student ENT's) who misdiagnosed me with GERD and put me on Nexium and then thought I had something going on in the Lingual Tonsil area, but wanted to take a "watchful waiting" approach to see what develops, then they diagnosed my problem as being nerve related and said it was Glosso-Pharyngeal Nueralgis and put me on Carbamazapine.

A total of 4 months passed before they decided that it was something else and did a CT Scan, but didn't see anything, but wanted to do a Panendoscopy w/ biopsy. I lost faith in the VA and requested an outside consult. The outside ENT sent me for a total of 2 MRI/MRA's before they finally saw the tumor in the base of my tongue measuring 2.5cm x 2.4cm x 3.8cm. He then did a surgical biopsy, but it was inconclusive and he did an in office puncture biopsy on the underside of my tongue, but it too was inconclusive. He finally did a PET Scan, but the surgical biopsy caused the cancer site to light up because of the healing biopsy site. He wanted to do another surgical biopsy to go deeper, but I decided to go back to the VA for another opinion from the head of the ENT department (no more students!).

We are now at month 8 since I first complained of a sore throat. The VA did the second surgical biopsy and found that I have Squamous Cell Carcinoma of the Base of Tongue with HPV (Human Pappillo Virus)involvement. Not the diagnosis I have hopped for, but at long last we know something and could start to deal with it. The pain for the past several months from the tumor pushing against the nerves was excruciating and required MSContin and Hydrocodone around the clock. I lost 60 pounds before I got my diagnosis and had two hospital stays for dehydration, UTI and uncontrolled tremors.

I then went through a series of consults to decide the best course of treatment for me. The VA dentist wanted to pull all my teeth in my lower jaw because they said that the VA did not have the new radiation technology (IMRT)like you see on the outside. I again had second thoughts about using the VA for my care and choose a civilian Oncology center. They said that the IMRT would allow we to save my teeth, but I would have to take extra care in flossing and brushing with a special flouride toothpaste for the rest of my life, along with for frequent dental visits. I can handle that if I can keep my teeth.

I also elected to have a PEG tube placed before I started any treatments since healing can be an issue if you do it later during treatment.

I started chemo treatment with Erbitux on 1 Dec 2009 and have had 4 of 8 treatments so far. I started IMRT radiation on 9 Dec 2009 and have had 12 of 35 treatments so far.

I broke out in a purple rash on my chest and an acne like rash all over my scalp, face and neck. The doctor presribed a antibiotic lotion and pads and it is clearing up nicely. They also had free samples of Aquaphor that I use to keep the skin moisterized.

I was able to eat soft foods up until I had about 10 radiation treatments and had to use the PEG exclusively. My my tongue and throat are pretty sore, but the pain meds help a lot. My lips are blistered so I keep them covered up with a salve.

I saw a nutritionist/dietician early on so my weight has been stable. She put me on Jevity 2.0 which is concentrated so I don't need as many cans.

One of the most uncomfortable things has been the dry mouth, particularly at night. I use a variety of Biotene products and find the gel the best for night use because it last the longest. I wake up throughout the night for pain meds and use some more Biotene before going back to sleep. I use Benadryl to make me sleepy and don't need any other sleep meds.

The lessons I learned from all this is not to ignore the symptoms and don't take the first diagnosis as the correct one and that I have more will to live than I ever would have imagined.

Life is worth living so persevere and fight on. Good luck to all

If you are a suitable
If you are a suitable candidate - try to get the Erbitux included in your treatment. The clinical trials results were amazing and it has been touted as one of the new Cancer Drugs of 2009. It is used as an additional drug to chemo and radiation - it attacks the cancer at the site by attaching to receptors - pretty cool space age stuff.

I have to admit I am envious - my dad has esophageal cancer --- and it is still in clinical trials for that cancer although it has been approved for use for throat cancer - you are lucky. I don't know the statistics but for esophageal cancer it took 1 year survival rates from 30 to 75%, I'll take those odds all day long:) Check it out and Good luck.

Best,
Cindy

unclaw2002

Hi - didn't read all the
Hi - didn't read all the posts --- ignore mine good luck as you fight this battle and good luck on the domestic front. Cindy

sweetblood22

Chefdaddy said:

Almost settled.
Hi Hondo,

I'm almost back on the map!

In the middle of moving yesterday, I had a radiation treatment and after returning to the hotel I started bleeding from my nose and mouth. I cannot swallow without bringing tears to my eyes and making my ears burn. I do not have any saliva function anymore, and everything, including water, hurts to swallow.

I have lost 40 pounds and yesterdsy was only my seventh threatment. I am going to try to start using the PEG tonight after we get unpacked and I find the canned food.

One of the issues I'm having that I didn't expect is that I'm having a lot of difficulty with walking. They chose to use Erbitux and not use chemo so as not to make the numbness in my legs worse, but I'm tripping and have almost fallen several times in the last week. My daughter hangs onto my arm everywhere we go.

I will check in later, this laptop has a screwed up mouse that goes whereever it wants to and anymore frustration today and it will become micro-pieces.

Your friend

Mike

I am sorry to hear about
I am sorry to hear about difficulty walking and the bleeding. I had bad bleeding from ,my mouth too, starting pretty early.

Find that canned food, and get some in you. Keep your strength up. Still praying for you. I started a list by my bed to keep names straight. I have an awful memory anymore!

I have a love hate relationship with my laptop. Though, it is mostly hate. One of these days, it will be in micro-pieces.

Hondo

Daddy Mike
Just so you know everyone here is thinking about you and praying for you my friend, I go in this morning for surgery to remove a Kidney Stone that has been stuck for almost 4 days now. I don’t want to tell you how they plan on doing that, it is not something a man would like to have done; I will leave it at that.

Tell the Kids I said hello and Mike I am with you all the way through your treatment.

Skiffin16

Hondo said:

Daddy Mike
Just so you know everyone here is thinking about you and praying for you my friend, I go in this morning for surgery to remove a Kidney Stone that has been stuck for almost 4 days now. I don’t want to tell you how they plan on doing that, it is not something a man would like to have done; I will leave it at that.

Tell the Kids I said hello and Mike I am with you all the way through your treatment.

HONDO
Best of luck with that...too bad the ultrasonic can't get it for you....

Chefdaddy

Skiffin16 said:

HONDO
Best of luck with that...too bad the ultrasonic can't get it for you....

Hi everyone,
Thank you for
Hi everyone,

Thank you for your support, friendship and prayers.

We finally got moved this weekend but I was very ill during all of it. If I wasn't carrying something I was passing out.

I had my eleventh radiation treatment today and it was a very frustrating session with the doctors afterwards. While he and another doctor were talking between each other as they were looking at their computer screen, I picked up out of their quiet chatter that they had increased the amount of rads of the treatments and when I questioned them about it they mumbled that they had found "something" in another lymph node.

I was completely stunned, first, for hearing this for the first time and that I had to question them to find this out and secondly, that this increase in the rads have my throat, tongue, inside cheeks and lips very swollen with ulcers everywhere. I cannot drink water without inflicting pain and there is no way that liquid food can go down, everything burns horribly.

This morning I gargled four times with Magic Mouthwash and it did nothing to ease the pain.
The doctor gave me a bottle of straight Lidocaine.

I had lost the hearing in my right ear after they removed the right lymph node in my neck back in December, but just lately, whenever I swallow, it sends a bolt of pain to my right ear drum. The doctor told me today that when they did the surgery it affected a band of nerves that goes from the jaw up to the ear, and that the radiation is now making it worse.

My question is how can they find "something" in a lymph node now when there has not been any additional tests or scans done since the beginning scans?

I could not understand why I appeared to be reacting and burning so much faster to the radiation treatments than the typical three weeks into the treatments that I have read about here. The last week has been a dramatic increase in burning, swelling, sores and the inability to eat or drink. My lips look like I kissed a hot burner on the stove, they're pretty ugly!

The doctor also said he is thinking about stopping the Erbitux chemo as I have had numerous bad reactions to it and now they give me two bags of Benadryl before they administer the Erbitux in an attempt to stop the bad reactions which comes on like a heart attack.

The latest Erbitux side-affect is that the skin on the ends of all my fingers have started splitting and bleeding, making it near impossible to zip up or button my pants or open a water bottle.

So guys and gals, if there was ever any doubt that "Murphy" was a close relative to me...it's no longer a debate, the vote is in! LOL

I won't have internet until March 2ND, my brother brought over his laptop tonight and he picked up a neighbors internet on his WiFi.

Thank you all again!

Hondo,

I'm so sorry you had to go through all that and surgery as well. My prayers are with and for you my friend. If you try to call I must warn you that I can barely get an audible sound out. But if you don't mind a bunch of whimpering grunts please call when your up to it.

Ill try to write again asap!

Your friend

Mike

Hondo

Chefdaddy said:

Hi everyone,
Thank you for
Hi everyone,

Thank you for your support, friendship and prayers.

We finally got moved this weekend but I was very ill during all of it. If I wasn't carrying something I was passing out.

I had my eleventh radiation treatment today and it was a very frustrating session with the doctors afterwards. While he and another doctor were talking between each other as they were looking at their computer screen, I picked up out of their quiet chatter that they had increased the amount of rads of the treatments and when I questioned them about it they mumbled that they had found "something" in another lymph node.

I was completely stunned, first, for hearing this for the first time and that I had to question them to find this out and secondly, that this increase in the rads have my throat, tongue, inside cheeks and lips very swollen with ulcers everywhere. I cannot drink water without inflicting pain and there is no way that liquid food can go down, everything burns horribly.

This morning I gargled four times with Magic Mouthwash and it did nothing to ease the pain.
The doctor gave me a bottle of straight Lidocaine.

I had lost the hearing in my right ear after they removed the right lymph node in my neck back in December, but just lately, whenever I swallow, it sends a bolt of pain to my right ear drum. The doctor told me today that when they did the surgery it affected a band of nerves that goes from the jaw up to the ear, and that the radiation is now making it worse.

My question is how can they find "something" in a lymph node now when there has not been any additional tests or scans done since the beginning scans?

I could not understand why I appeared to be reacting and burning so much faster to the radiation treatments than the typical three weeks into the treatments that I have read about here. The last week has been a dramatic increase in burning, swelling, sores and the inability to eat or drink. My lips look like I kissed a hot burner on the stove, they're pretty ugly!

The doctor also said he is thinking about stopping the Erbitux chemo as I have had numerous bad reactions to it and now they give me two bags of Benadryl before they administer the Erbitux in an attempt to stop the bad reactions which comes on like a heart attack.

The latest Erbitux side-affect is that the skin on the ends of all my fingers have started splitting and bleeding, making it near impossible to zip up or button my pants or open a water bottle.

So guys and gals, if there was ever any doubt that "Murphy" was a close relative to me...it's no longer a debate, the vote is in! LOL

I won't have internet until March 2ND, my brother brought over his laptop tonight and he picked up a neighbors internet on his WiFi.

Thank you all again!

Hondo,

I'm so sorry you had to go through all that and surgery as well. My prayers are with and for you my friend. If you try to call I must warn you that I can barely get an audible sound out. But if you don't mind a bunch of whimpering grunts please call when your up to it.

Ill try to write again asap!

Your friend

Mike

Mike
It is 5:30am and I am sitting here was a tube stuck up my manly objective if I might say it that way, there is also a stent in the bladder that must stay in for 4 more days. I was told that I cane take the stent out my self on Friday by just pulling the string attached to it.

So I asked the nurse is it something that I am going to feel when pulling this string to remove it. She said it will be about the same as removing a tampon, no different, O I said, I never removed one of them, she looked at me and said I just new that was the wrong answer to give you.

I hope this gives you a little smile when you read it, God bless

Hondo

Skiffin16 said:

HONDO
Best of luck with that...too bad the ultrasonic can't get it for you....

John
When the doctor seen it he new there was another problem and through it best to just go in and take care of all of at one time.

All the best to you and the Wife, God be with you

Pam M

Hondo said:

Mike
It is 5:30am and I am sitting here was a tube stuck up my manly objective if I might say it that way, there is also a stent in the bladder that must stay in for 4 more days. I was told that I cane take the stent out my self on Friday by just pulling the string attached to it.

So I asked the nurse is it something that I am going to feel when pulling this string to remove it. She said it will be about the same as removing a tampon, no different, O I said, I never removed one of them, she looked at me and said I just new that was the wrong answer to give you.

I hope this gives you a little smile when you read it, God bless

Feel for you, Hondo
Hondo,
A friend (who had just passed multiple kidney stones) told me that their dr. said that passing a stone without going to the doctor was the closest to childbirth pain a man could get. Sorry you have to go through the pain and anxiety hope the stent and tube help cut it back. LOVED the nurse's explanation about removing the stent being like removing a tampon. Did your wife laugh out loud?
Hope this "passes" soon.

Pam M

Chefdaddy said:

Hi everyone,
Thank you for
Hi everyone,

Thank you for your support, friendship and prayers.

We finally got moved this weekend but I was very ill during all of it. If I wasn't carrying something I was passing out.

I had my eleventh radiation treatment today and it was a very frustrating session with the doctors afterwards. While he and another doctor were talking between each other as they were looking at their computer screen, I picked up out of their quiet chatter that they had increased the amount of rads of the treatments and when I questioned them about it they mumbled that they had found "something" in another lymph node.

I was completely stunned, first, for hearing this for the first time and that I had to question them to find this out and secondly, that this increase in the rads have my throat, tongue, inside cheeks and lips very swollen with ulcers everywhere. I cannot drink water without inflicting pain and there is no way that liquid food can go down, everything burns horribly.

This morning I gargled four times with Magic Mouthwash and it did nothing to ease the pain.
The doctor gave me a bottle of straight Lidocaine.

I had lost the hearing in my right ear after they removed the right lymph node in my neck back in December, but just lately, whenever I swallow, it sends a bolt of pain to my right ear drum. The doctor told me today that when they did the surgery it affected a band of nerves that goes from the jaw up to the ear, and that the radiation is now making it worse.

My question is how can they find "something" in a lymph node now when there has not been any additional tests or scans done since the beginning scans?

I could not understand why I appeared to be reacting and burning so much faster to the radiation treatments than the typical three weeks into the treatments that I have read about here. The last week has been a dramatic increase in burning, swelling, sores and the inability to eat or drink. My lips look like I kissed a hot burner on the stove, they're pretty ugly!

The doctor also said he is thinking about stopping the Erbitux chemo as I have had numerous bad reactions to it and now they give me two bags of Benadryl before they administer the Erbitux in an attempt to stop the bad reactions which comes on like a heart attack.

The latest Erbitux side-affect is that the skin on the ends of all my fingers have started splitting and bleeding, making it near impossible to zip up or button my pants or open a water bottle.

So guys and gals, if there was ever any doubt that "Murphy" was a close relative to me...it's no longer a debate, the vote is in! LOL

I won't have internet until March 2ND, my brother brought over his laptop tonight and he picked up a neighbors internet on his WiFi.

Thank you all again!

Hondo,

I'm so sorry you had to go through all that and surgery as well. My prayers are with and for you my friend. If you try to call I must warn you that I can barely get an audible sound out. But if you don't mind a bunch of whimpering grunts please call when your up to it.

Ill try to write again asap!

Your friend

Mike

What Now?
Mike,

Glad to hear from you again here. Sorry to hear things are hard AGAIN. We need to send your cousin Murphy on vacation - or get him to find his own place, so he can get out of your house.

Amazed that drs found something "new" without new tests. Huh?

Glad you already have the PEG is place, so you can put it to good use NOW.

Please know that there are a lot of us pulling for you, and hoping you catch a break.

debbiejeanne

Chefdaddy said:

Hi Guys
Well guys,

To keep up with this group, my son's dog's mother was a Boston Terrier and dad was believed to be a Rottweiler, which seems nearly impossible. She looks like a 50lb seal and a real sweet heart.

Today the radiation department had a problem, as they had made my mask a few days after all my teeth were removed and I was pretty swollen at that time. This morning, the mask wasn't lining up correctly. The swelling had reduced in size and they were having to run and stop the machine several times and make adjustments. They finally used tongue depressor sticks as shims to make it line up and it finally worked. Tomorrow I have to go in early so they can rerun it and me on the simulation before I get radiated.

When I went to the chemo department to get the Erbitux, they tried to access my new port for the first time and it wouldn't work. The nurse tried and tried, every time she tried to flush it I would hear a slushing sound in my ear, she got very concerned as I had a swollen area in my neck where the surgeon had tied into the main artery.

She went ahead and put in a line in my arm to get me started on the pre-Erbitux drugs. She also called the surgeon that put it in to come in and look at the problem. He eventually arrived and in trying to flush some saline he couldn't get the syringe to work and called the nurse over and she unscrewed the tip off the syringe...I knew I was screwed at that point!

He tried to flush it and I heard the slushing sound again and then had me go to have a chest and neck x-ray. It revealed that the line in the neck was all folded over and pinched off...don't these idiots test flush the port before they sew up their damned handiwork???

How stupid, he then told me he would repair it in one of his examination rooms, using a local numbing agent and a few stitches, I said "Oh Hell No"! You nick the main artery and you will not have me in an OR setting to deal with that! I refused! Now I'm having another surgery Friday so he can try to get it right. Who? me worried?

The Erbitux went good, they gave me three drugs prior to the Erbitux that put me to sleep and I didn't have any bad reactions.

The really bad news came to me as my daughter and I were having a bite to eat at the hospital's cafeteria just before leaving for home. I got a call from the kids mental health counselor.

She had just left a meeting with the kids attorney, their mother's counselor and herself, where she learned from the mother's counselor that the mother had left Washington State (across the river)and moved into an apartment complex the day after our last court hearing a few weeks ago.

The serious problem is that the the complex is next to ours and her apartment is right next door to our apartment, around 50 feet away with nothing hindering her view of our apartment, front or back. Then I was told she had become the manager there!

But it gets even better,

Her counselor, who appears to also be amazed by her craziness, also informed the group that she had informed him (her counselor) that she was watching every person that comes and goes from our apartment and the cars that leave the parking lot and that she also spies on the kids if they are outside.

The kids counselor was almost in tears as she was trying to tell me this, as she didn't want to add anymore stress to what we are already dealing with.
She apologized over and over for having to tell and warn me of this outrageous action by the mother and that both kids were in danger.

Apparently the mother had her counselor stop at her new home before he attended the meeting to pick up a hand written letter she's mailing to the Judge. She wanted him to give a copy to the kids counselor, the kids attorney and one for me. Apparently she is telling the Judge that she did this move to keep an eye on my son's dog??????

My kids counselor made it very clear to me that if my son happens to see her it will do severe psychological harm to him and possibly undue what success he has made in getting through some of the trauma and abuse. My son does not know any of this, the counselor has called a meeting with both kids in a few days where she's going to carefully tell him and then report his reactions to the Judge. The kids attorney is going to do the same next week and submit her report and recommendations to the Judge as well.

My daughter already knows this as she heard me come unglued as I learned this from their counselor over the phone. She is now terrified, and refuses to go outside and refuses to take the dog outside to do her duty. She has absolutely no parental time or contact with either child due to the degree of abuse.

I believe this may fall under child endangerment and stalking. Will this ever end?

It's been a long long day and I'm feeling very fatigued after the radiation and Erbitux and this latest set of events.

Please keep us in your prayers my friends.

Please ask God to put the train in reverse that's coming at us at the other end of the tunnel and get it out of our way....Amen!

Mike

troubles
Dear Mike, I am sorrier for you than words can express. Murphy is definiely all about you right now but please remember, it can only get better. You and your children are always in my prayers and always will be, just as the other here are. I wish with all my heart that we could do something to make the raod a little easier for you and your kids!! Please know that we truly care about you and your troubles and I"m sure God will help you. If you would like to talk to someone, let me know and I'll give you my phone number, you could call day or night. Please try to stay positive and talk about it (all your trouble) when you need to.
I pray God will bless you and your family well.
Sincerely,
Debbie

debbiejeanne

Chefdaddy said:

Hi my friends,
I have been
Hi my friends,

I have been bouncing all over the place, especially at the hospital.

What I thought was an infection in the upper and lower gums turned out to be jaw bone chips trying to work their way out of the gums. This morning the Oral surgeons numbed me up and started pulling out bone chips. I'm glad these guys are not the ones that did my Whipple surgery, leaving parts of intestines, stomach and pancreas floating around. Sorry....starting to acquire a non-friendly attitude towards some medical "experts". FYI Definition of Expert: "Ex" is a "Has Been" and a "spurt" is a "Drip Under Pressure"

We are still in an uncomfortable transition. My son has severely regressed physiologically and has again returned to self-inflicting physical harm and damage to himself due to his returned fear that he is going to be kidnapped again and will never see us again. He is now under 24 hour watch.

The Radiology department had to make a 2nd mask for me last Monday, as the first one was too big after the swelling in my face went down from the teeth extraction and last night at 8:00PM they radiated me again using the new mask and it didn't fit because the swelling had returned due to the bone chips trying to leave the gums. It was a very painful session as they had to force the mask onto my jaw so they could clamp it down. I hope I can return the favor one day lol.

I now look like I'm hitting puberty again; the Erbitux has already put sores and rashes all over my face and scalp. I occasionally embarrass my poor daughter when we are in the hospital's elevator and it's full of loud, obnoxious people. I tell her in a semi-loud voice that the Disease Control people didn't want me to leave the room but I'm hungry! The elevator gets really quiet and people start getting off the elevator earlier than the floor that they pushed the button for....go figure.

It's difficult to get time on the computer where we are staying. I'm really hoping things get straightened out by Monday; this has been very difficult on all of us, especially my son.
I can handle it, I'm a tough old fart, but kids shouldn't have to go through this kind
of @*%$%)*!!!

That's my "EXPERT" opinion! lol

I know, I know, counselling is in order!


Your friend

Mike

YOU
Mike, it simply amazes me that you have such a wonderful attitude when you are being deal such crap right now. You are a hero to many. I am quite envious becaue I couldn't come up with the funny stuff on a good day, much less days like you've been having. You truly are a remarkable person and it is VERY OBVIOUS THAT YOU'VE DONE AN AWESOME JOB RAISING YOUR CHILDREN!! You're right, they shouldn't have to go thru this or cancer or anything else but they are stong b/c of the great job you are doing with them so they will be ok. YOu will be the strenght for your children and them for you. That is what family is all about. So keep you great attitude and your faith and all will be well.
God Bless You,
Debbie

debbiejeanne

Chefdaddy said:

Hi my friends,
I have been
Hi my friends,

I have been bouncing all over the place, especially at the hospital.

What I thought was an infection in the upper and lower gums turned out to be jaw bone chips trying to work their way out of the gums. This morning the Oral surgeons numbed me up and started pulling out bone chips. I'm glad these guys are not the ones that did my Whipple surgery, leaving parts of intestines, stomach and pancreas floating around. Sorry....starting to acquire a non-friendly attitude towards some medical "experts". FYI Definition of Expert: "Ex" is a "Has Been" and a "spurt" is a "Drip Under Pressure"

We are still in an uncomfortable transition. My son has severely regressed physiologically and has again returned to self-inflicting physical harm and damage to himself due to his returned fear that he is going to be kidnapped again and will never see us again. He is now under 24 hour watch.

The Radiology department had to make a 2nd mask for me last Monday, as the first one was too big after the swelling in my face went down from the teeth extraction and last night at 8:00PM they radiated me again using the new mask and it didn't fit because the swelling had returned due to the bone chips trying to leave the gums. It was a very painful session as they had to force the mask onto my jaw so they could clamp it down. I hope I can return the favor one day lol.

I now look like I'm hitting puberty again; the Erbitux has already put sores and rashes all over my face and scalp. I occasionally embarrass my poor daughter when we are in the hospital's elevator and it's full of loud, obnoxious people. I tell her in a semi-loud voice that the Disease Control people didn't want me to leave the room but I'm hungry! The elevator gets really quiet and people start getting off the elevator earlier than the floor that they pushed the button for....go figure.

It's difficult to get time on the computer where we are staying. I'm really hoping things get straightened out by Monday; this has been very difficult on all of us, especially my son.
I can handle it, I'm a tough old fart, but kids shouldn't have to go through this kind
of @*%$%)*!!!

That's my "EXPERT" opinion! lol

I know, I know, counselling is in order!


Your friend

Mike

YOU
Mike, it simply amazes me that you have such a wonderful attitude when you are being deal such crap right now. You are a hero to many. I am quite envious becaue I couldn't come up with the funny stuff on a good day, much less days like you've been having. You truly are a remarkable person and it is VERY OBVIOUS THAT YOU'VE DONE AN AWESOME JOB RAISING YOUR CHILDREN!! You're right, they shouldn't have to go thru this or cancer or anything else but they are stong b/c of the great job you are doing with them so they will be ok. YOu will be the strenght for your children and them for you. That is what family is all about. So keep you great attitude and your faith and all will be well.
God Bless You,
Debbie

debbiejeanne

Chefdaddy said:

Hi guys and gals,
Brief
Hi guys and gals,

Brief update. We are still in a transitional state and it's becoming more difficult for my son, causing more reversal behavior. I've also been told that I appear to have started showing reactions to the radiation and the Erbitux a couple weeks earlier than expected. My tongue is covered with burns and I'm having difficulty with talking, swallowing, dry mouth and throat and mucous build-up.

I'm afraid I'm going to have to start using the PEG very soon as I'm dropping weight. They don't know if it's the blood disorder that made me burn so quickly. The Erbitux has me covered with blisters all over my scalp and zits on my face. The little suckers are very painful for being small.

I'm going to ask the radiation doctors if they have things lined up properly as both my eyes are dark red with bloodshot. They are extremely light sensitive and very dry. I don't know if the Erbitux can cause this but it started right after my first radiation sessions started.
I'm on my second mask because the first one never lined up correctly due to the swelling in my mouth from the teeth extractions.

I don't know how I'm going to do in court this week, unable to talk. It should be interesting.

I thank all of you for being here for me and your concern for my kids.

Your friend always

Mike

court
Mike, just take pen and paper. They will have to deal with it...lol. I'm sure they will understand. I'm so sorry that you have yet a few more problems. I absollutly don't know how you do it, you are a much BIGGER person than most.
God Bless,
Debbie

Hondo

Pam M said:

Feel for you, Hondo
Hondo,
A friend (who had just passed multiple kidney stones) told me that their dr. said that passing a stone without going to the doctor was the closest to childbirth pain a man could get. Sorry you have to go through the pain and anxiety hope the stent and tube help cut it back. LOVED the nurse's explanation about removing the stent being like removing a tampon. Did your wife laugh out loud?
Hope this "passes" soon.

Hi Pam
All I can say if it
Hi Pam

All I can say if it is anything like childbirth I know why God gave it to woman, there would be no children if men had to go through this type of pain. The tube came out this morning and it was just about as must pain as I anticipated it would be, so I can’t wait to take the stent out.

Thanks for your post, as with time all things pass