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#193018 09-12-2016 12:48 PM
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Very long story, almost twenty years since the first diagnosis. I'm one of the 5 to 7% that fall into the "genetic" category. (Non smoker / non drinker / non HPV.) Not really the lottery I wanted to win, but here I am.

I'm two years out, (plus a few months) from my second go 'round with oral cancer. This last bout left me unable to swallow / and a fairly severe speech impediment.

I'm lucky enough to still be able to work full time, around 50 hours per week, but lately I'm really feel like the limited energy I have on reserve is reduced with every passing week.

I never complain about anything. I feel grateful for each day. My wife and kids are supportive. My faith is strong. I have everything I could have hoped for in life..........

Why do I feel like a shell of my former self?

Is this common?

Brief history - I was very active before my first diagnosis of SC. Skiing / White water rafting / weightlifting / mountain biking / etc. I was "that guy" going through the initial radical neck dissection / chemo / radiation / etc. it was tough, but I was in my early thirties, just married, and physically and mentally strong. After completion of the radiation, I was back to work and within a year I returned to the gym and was leading an active life again. Fast forward 17 years, two kids, coaching youth sports, renovating an old house.....happy life when the second diagnosis happened. This time it was much harder and the long term impacts are a great deal more adverse.

Again - I'm not sure what I'm dealing with emotionally. What bothers me the most is that I'm just not myself. There's just not much left.......

I just realized that I started out by saying I never complain......three paragraphs later, I've done nothing but complain!!!

I probably should talk with a professional (Psychologist) about these feelings, but I'm an engineer, so I have to try something on my own and arrive at my own conclusions before I take that step.

I guess I'm curious - Does anyone else feel emotionally "less than normal" after treatment?


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hi bjmpittsburgh,

Welcome to the forum. I am sorry that after seventeen years you are back. That's really disappointing. Here you can complain all you want, we have all been through the experience in one way or another and we truly understand what you are feeling.

Having to see a therapist is not a last ditch effort -- in fact, having someone to whom you can unburden may well help you to put things in perspective and help you to figure out how you can cope with the present situation. At least, that's the experience I have. I don't see it as weak, it's just help I need like I may need a crutch if I break my leg.

There are quite a number of members who are on permanent feeding tubes; maybe they will pop in and give you their perspective.

The treatment is for the body but as far as my experience goes, I find it requires a huge adjustment emotionally and mentally as well. Maybe you are in the process of working that through.

If you need to ask questions or simply to voice your frustrations, you are welcome to do it here. We will listen.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Welcome to OCF! Im glad you're here, its always nice having fellow survivors join our ranks. You're family now smile

I dont consider your post to be even close to complaining. Its explaining everything you have been thru. OC isnt an easy cancer to bounce back from. You have done it successfully twice which is no small feat. There arent many who have been thru it twice especially after such a long gap of being cancer free. You are very fortunate to have caught the second round while it was able to be managed.

Psychologically, cancer is a tough pill to swallow (please pardon to pun). It impacts so many of life's daily basic functions. Its just not possible for others to have the level of understanding a fellow survivor has. I could talk to hundreds of people (who all had a basic understanding of OC) for hours and they still couldnt completely get it. It takes walking a day in your shoes to really understand what being an OC patient/survivor is about. You are not alone with your feelings! Ive been part of this group for over 9 years reading every single new post. Over the years, Ive seen hundreds express the same feelings you wrote about. There have been studies done that prove a link between OC and depression and also suicide. After what you have gone thru who could honestly say it didnt affect them mentally? Being forced to face your own mortality not once but twice is bound to have some kind of impact on you.

I advise finding a therapist who counsels cancer patients/survivors. Ask your physicians at your treatment center if they have someone on staff that can help you. A therapist or even a psychologist is just another tool to help you make it thru the day. Many here have found antidepressants to be very helpful. Maybe this would be beneficial for you as well? If you would go that route, remember those types of medications take a few weeks to kick in and begin to work so give it at least a month to see a difference.

Post as often as you like. Its ok to express the good, the bad and the ugly here. Our site is safe and completely anonymous. Your identity is kept as private as you want it to be. Posting all your bottled up emotions here can help you to feel better. We get you!


PS... GREAT job with your signature!!!! Thank you smile







Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 111
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Thank for the kind words Christine. Your response is very well written and thoughtful.

The physical issues / constraints, pain, pump feeds, can be dealt with.

The emotional swamp I'm working through is not so much based in the mortality issues, but more so in my overall expectations associated with quality of life.

I have started to look for a Therapist to provide some guidance. Perhaps, with some time and effort I can arrive at some level of acceptance / better understanding of who I am now.



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Sep 2016
Posts: 111
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Posts: 111
Gloria,

Thanks.....I agree that seeing a Therapist is not a last ditch effort. It's just my nature to try to work through / figure out things on my own before taking the next step.

The feeding tube / pump is cumbersome, but not terrible. (Although I do miss how a good meal used to make me feel!)

While 17 years was a long time between diagnosis, it just drives home the fact that my struggles with OC is / will remain a lifelong endeavor


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Posts: 85
I have been using a feeding tube for over a year. Some days it is a blessing and some days it is not for sure. I struggle every day to keep my nutrition and water needs met. Always wondering if there is something better out there to put through the tube. I do try every day to drink soup or nibble on a little something just to keep the swallowing muscles working. Perhaps we can exchange feeding tube tips. I do have up days and down days, sometimes even weeks of each and can so understand what you are saying. Some days it is the littlest of things that set me in a funk but my strong loving family is always there for hugs and encouragement. Your family and faith are so important and I am happy to see you are blessed with both. Please continue to check in here. You will never meet a more informative and supportive group.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
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Jo -

Sorry for the delayed response. Busy time of year with the kids starting back to school and the late season construction crunch all hitting at the same time.

Two years plus with the tube and pump for me. Sometimes I can get away with a quick push for a box or two if I'm in a rush, but not often.

Not able to really swallow anything other than.....Dr Pepper or orange juice, really cold with small sized crushed ice. Not a standard swallow, just more or less dumping it down and relying on the ice to cause a reactive swallow. 16 oz can deliver around 200 calories. It's not for everyone. My doctors laugh about it now, but they were not happy when I first told them what I was trying. (High potential for aspiration.)

I would love some soup - French Onion, without the cheese of course, but it's a little on the thin side. Between the two of us, French Onion served with crushed ice just wouldn't be the same!

Usually, (all the time), I rely on the standard IsoSource - Non Flavored. Between 8 and 10 boxes per day. The steady diet, supplemented with help from Dr Pepper, has kept my weight consistent +/- 3 lbs for the last 18 months or so. Started with vanilla flavor, but that tastes terrible when / if it comes back up. I have found that if I remain on the same feeding schedule every day, things are not so bad. It's when I miss a feed or sleep in, that's when problems can start. (Also, if I'm on a schedule, I stick to it if at all possible.) Although its regimented, it seems to work for me.

Do you have any reflux issues? After the recurrence, I have to keep my head elevated or risk heavy regurgitation with potential to aspirate.

I've tried pushing watermelon juice through. Not bad. Same with cranberry juice.

I get what your saying about getting into a funk. I used to cook all the meals for my family. (Can't beat family time around the table.) Now.......once in a while I'll cook, but I can't stay while they eat. Miss those times. I've found that during "my feeds", I enjoy reading. My daughter and / or wife will join me from time to time. I really enjoy the quiet time with them.

No matter what though, the energy level and reserve strength, is just not there and I'm fairly certain that it will not be back. That is what rubs me the wrong way more than anything else.



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Joined: Jul 2016
Posts: 85
Now it is my turn to apologize for not getting back to you sooner. Seems as though I spend days here reading then have to back away for awhile. Not that all postings here are not in my thoughts all the time, quite the opposite is the case.

I was surprised after reading my post to you back in July that not a whole heck of a lot has changed as far as eating/drinking goes. I guess the funny part is I get some food or drink item in my head saying "hey that will work!" I run to the store, buy it, then after a bite or two so disappointed that it did not go down. I constantly fill the refrigerator with the voluminous containers of leftovers and funk out once again because I don't want to try it again.
Funny how I loved to cook and bake and in the true "southern way" was always at a sick friends door with meals and goodies first but now I only find myself in the kitchen to pour yet more sinking liquid formula to feed myself. (But don't get me wrong I am glad to have it). Quite an eye opener to see how eating drives so much of our existence with our family and friends. Everything seems to boil down to come over for dinner or let's meet at a restaurant. We have a very large house where everyone would come all the time for any party or get together excuse, eat and enjoy the evening because the joke was I always "cooked for an army".

Now I dislike walking through the grocery store. I find myself almost filling the cart with "used to be" great food items only to say to myself oh, you can't do that ! I even dream about potato chips or holding a big fat cheeseburger in my hand....wake up with hand in position at my mouth but it is an empty hand ! Now THAT is a nightmare, lol.

Shoot, when I first got the feeding tube I would hide in the bathroom to feed myself when our youngest son was visiting so he would not see the feeding tube but I gave up on that silly exercise. I again say I am so lucky to have a hubby of 44 years and grown children that are so caring and supportive. That is so incredibly important. I know your family is the same way with you so we are truly blessed.

Dr Pepper you think ? My crutch was Pepsi but now it is a burning volcano in my mouth, never thought I would say that. I do take sips of orange or apple juice and like you mountains of small crushed ice. I am never more than six feet away from my glass of ice water. My hubby has the sound of the overworked ice maker imbedded in his ears ! In fact, in the south we so often lose our lights for a few hours even when it just rains. So, I keep containers of ice in the freezer for back up.

Ahhhh, yes French Onion Soup sounds SO good..... might be another store run in near future.

Have you tried some thickening power ? I don't know much about it but they say it has no taste and you can use it in any liquid. I can swallow, sips not gulps, but my problem is that anything that is more than water, I can't get it to go back since the inside of my mouth is so extremely dry. And by the way, ALWAYS feels like an inferno.

True, I do also worry that the energy level and reserve strength will never be what it was but we can't dwell on that or it will drive us crazy. It is unbelievable how little I get done here on a daily basis but I have learned to shrug my shoulders and say oh well and whatever a LOT. I refuse to push myself but just take each day to enjoy what I do have. We have a new focus now. I see mine as enjoying family, delighting in the grandkids and stopping to "Smell the Roses".

Reflux issues you ask ? Oh yes, With 3 recliners in the house that stand you up if you want it to I have choices LOL. My poor hubby never knows where he is going to find me in the mornings. I am down to 86 pounds, a true skeleton here but I refuse to lose any more weight and working hard each day to get as much down the tube as I can handle. Christine is so right when she preaches on this site to push water, I really got myself in trouble not heeding that advise.

I am afraid the admins are going to kick me out of here due to this long winded post, I really did not mean for it to be THIS long. Hang in there buddy, you have been through the wringer but you have a family that loves you so much and they are counting on you to love them back. Take care and hope to hear from you soon !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
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Joined: Sep 2016
Posts: 111
Jo -

It does seem like we have a lot of similarities with our current situation.

It can be a lonely struggle at times, but, with family, friends, and work, I'm able to focus on other issues rather than my day to day issues.

I bet your southern meals were fantastic!

I also have the thought of trying different things with the same result sitting in the fridge

I understand about wanting to "hide" feedings from family. I still catch myself quietly going to another room to take care of that. Yet at the same time at work I just toss the bag and pump in my desk drawer and work through lunch while the pump grinds through a couple of boxes.

Is it the volume of the feed that bothers you? or something else?

I found the Dr Pepper was easier to "drink" than Coke / Pepsi. I used to be a Coke guy but can't take the heavy syrup "taste".

My wife has always said that I'll need a little extra weight to fight the next battle. I hate the pump and liquid diet, but no other options exist. So, I watch the food commercials and remember what things tasted like and try to convince myself that I'm not starving.

Even though I've had two separate radiation treatments to the neck / jaw, (both sides), my saliva production is lower, but not terrible. (Very Lucky)

Stay positive, we have been given this path in life for a reason.



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jan 2003
Posts: 109
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bjimpittsburgh

I am 14 years since diagnosis, start having difficulty to swallow about two years ago, and lately found my speech became unclear too....doctor has warned many times not to eat from mouth, put in tube... While I have not put in peg yet, I did just drink liquid nutrition for lunch because if I eat, I cough badly and make real mess....
I take 4 boxes of Fiber Source HN with me every day and finish them in 8 to 10 hours while I am in office and cook myself for dinner, usually it is soft Tofu and some well cooked vegetable.


WZ | Stage 4, Tonsillar Cancer Aug, 2002
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My husband was on thickened fluids. The brand name is "Thicken UP!" It's a powder that you add to your liquids, the amount depends on the thickness of fluid you should be on -- nectar, honey or pudding. It thickens quickly and one is supposed to admit to every liquid that goes in the mouth. It is tasteless and colorless. The idea is thickened fluids help prevent aspiration -- think how water splashes all over the place when you spill it, whereas thickened fluids tend to stay together and have less movement. In swallowing, this means less lucid will escape and go into the trachea.

John was prescribed Prevacid to help with the acid reflux and it worked really well for him. You may want to talk to your doctors about that.

The literature advises against using ice and anything that may melt and change the consistency of the liquid. This includes jello, ice cream as well as ice. When you aspirate, do you cough the liquid up? People who have swallowing problems may suffer from silent aspiration (John had it too), which means when he aspirated, he did not react to it and did not know it had happened. So it is important to be cautious.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Likes: 6
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Have you done a barium swallow test? If not check with your treatment facility if there is a SLP or sometimes a nutritionist can do the test. Its very important that you know for certain you can swallow safely so you avoid having aspiration pneumonia. The professionals can also work with your to help you regain your swallowing ability. It takes time to get those unused muscles functioning correctly after being mostly inactive for so long.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
WZ #193184 10-10-2016 09:12 AM
Joined: Sep 2016
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WZ -

Just read your post. Always nice to meet another "long term" survivor!

Curious - Have you had an ENT look at why your swallowing and speech has deteriorated (relatively) recently since you are so far out from your last treatment?

I agree that the liquid we can get down is ABSOLUTELY the only thing that provides any variety......but unfortunately, in my case its not enough to sustain on its own. Glad to hear that you can still manage some soft foods.

The PEG / pump are a pain to deal with, but it is the best way I'm aware of to consistently maintain control over caloric intake.

Good Luck with things and always keep your doctors notified of any changes.


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
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Joined: Sep 2016
Posts: 111
gmcraft -

I did not react well to thickened foods. Even exceptionally small quantities resulted in severe choking. Same with thin liquids without ice. The surgeries and radiation have left a lot of scar tissue and damage to the top of my throat.

I do use Prevacid to fight the reflux, in combination with sleeping with my head and chest elevated. Seems to take care of most of the problems

I'm aware of the aspiration issues and your analogy of spilled water is very appropriate. The reason it does work for me is the extreme cold liquid in conjunction with the carbonation provides a "trigger" and the result is a rudimentary swallowing effort. Although it may not be 100% effective, I follow with a hard throat clearing cough.

Aspiration and pneumonia are very real issues that can cause serious problems to a compromised system. Subsequently, I try to be extra vigilant about it.

Thank you for your response


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
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Joined: Sep 2016
Posts: 111
ChristineB

I've failed every item on the Barium swallow test. I tried the test at least twice with the same results. I tried a few of the items a third time after swallowing and speech therapy with a fluoroscope just to see what wasn't working during the initial "grab".

I'm trying a different approach now. PT with a therapist who specializes in head and neck soft tissue damage from radiation. The idea would be to loosen the tissue around the hyoid bone and then (hopefully) a better grab and swallow may result. Very painful. Also working on the jaw to loosen the trismus.


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Joined: Jul 2016
Posts: 85
Yes, it is funny whom you will allow to see your feeding ordeal. Some folks I don't mind and others "no way".

Mine is a volume problem. I am supposed to take in five cans of 2cal a day for a total of 2250 calories and as much water as I can. I do get in three cans a day and usually three cups of water, (Christine would really scream at me for this low amount of water). Crazy how excited I am when I do four cans in one day. I do one cup at a time and then am so full I have to wait several hours before I go for another cup. I am trying to add to that a little more each feeding to get the volume higher. I have just received a case of Liquid Hope packages from Larry6905 on this site and plan to try it today. Anything to get off the canned liquid !

I tolerate the food commercials, driving past our old favorite restaurant stomping grounds, grocery stores and even get togethers with friends where food is one of the main attractions. But, what I find myself doing is searching recipes from any and everywhere. I write them out always planning to make them. I have more notebook recipe books now than you can imagine, LOL. Hubby says we are going to go broke buying reams of paper. I think I even am giving myself carpel tunnel of the left wrist with all this writing ! Oh well, it keeps me busy.

Through Amazon I subscribed to an app called Texture last week. For about $15.00 a month I can read any or all of the 187 magazines they offer. As well as back issues. Of course I chose all the recipe books first then Consumer Reports, Smithsonian, This Old House, History, and several more. Having fun with that even though my wrist is suffering.

I am amazed that you have the strength and drive to work every day. I eat and read and sleep a lot. I can not even imagine having young ones around, working, or even taking on all the house duties. My hubby takes care of just about everything (except laundry, he is clueless there). We have the grandkids here often and they sometimes spend the night. They are 3, 2, and 1. Wow, am I worn out when they leave, but so much fun to spend time with them. I just think how hard this would have been to go through when our three kids were young or even teenagers. Yes, the after effects of all we have been through sure is a battle.

I saw the ENT Doctor yesterday. He did the light/scope down the nose and mouth and said it looked very good except that my throat was still very swollen and raw but to keep doing what I have been doing. He did take a lot of wax out of both ears, oh my what a relief that was ! He said it was still lots of dead skin from the radiation.

I try to stay positive and I have read your comment "we have been given this path in life for a reason" several times, even wrote it down. I does give me strength and I thank you for that. Take care and looking forward to hearing from you.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Jul 2016
Posts: 85
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Hi WZ! Thanks for your post. Sounds like you are working on the nutrition issues. Have you had a swallowing test done ? If I read that right, doctor says don't eat by mouth but you don't have a peg ? Please be careful doing this as I'm sure you know, aspiration is not a good thing.

Fourteen years out is a great record indeed but is there any reason they give you for experiencing the swallowing issues again this far out? Could it be inflammation ?

So you are working every day ? I do admire that ! Please stay in touch and let us know how you are doing !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
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Joined: Sep 2016
Posts: 111
Jo,

Wax in the ears! I thought I was the only one that had itchy ears. After recovering from the first series of radiation, my ear canals were constantly dry and itchy. (I know the doctors say not to put anything smaller than an elbow into your ear, but q-tips do the job for me!)

Good luck with the Liquid Hope feeds. Let me know how they work for you.

I think some of my issues are related to volume also. I seem to end up with a lot of nausea when I try three boxes at one feeding now.

One thing that I've found that helps is starting early in the morning and going back to sleep while the pump does its job. That way two or three boxes are in before I even really start my day. Then I read during the evening while another two or three boxes are put through the pump. Although, usually I stop about halfway through and take the dog for a walk or something else just to have a break. The break helps with the "pressure / nausea" (You now have your magazines and recipes to help pass the pump time.)

Glad your hear your good news from the ENT! Its always a relief when you have no new surprises to deal with.

I've re-read your paragraph about work and being busy with family a couple of times. I really believe that resuming my responsibilities at work and at home as soon as possible after treatments was a huge benefit to my overall recovery. Conversely, my kids ability to deal with and accept my illness is also directly linked to how quickly I was able to return to as much of a normal life as possible.

Stay strong and enjoy your grandchildren.....


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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Posts: 85
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Yep enough wax to donate to a museum LOL. Hate to get that stuff dug out but oh what a relief it is !

I am thinking about asking for a pump as I do total gravity eating. It sounds enticing to be asleep and eating at the same time. That would give me more time to read.....as if I needed that ! What I really need to do is get out of this chair and move around more often.

Still have not started the Liquid Hope yet. Kind of scary thinking of doing anything that would stop up this tube. Plus the fact I really cringe at the thought of throwing up. So now since it is 6 pm here, guess I will shoot for tomorrow. Funny how I have become quite the procrastinator now. My attitude lately is "whatever" or "it can wait till tomorrow".

I do not walk the dog, he is big and goes crazy pulling the leash when he sees any other animal outside. I could just see me being dragged down the block yelling all the way.

What type of work do you do and how many hours a week ? We do medical billing at home and have many practices we do the billing for. I say we but my hubby, son, and daughter in law do it all now. I just listen to their woes of dealing with the insurance companies. We have done this billing from home for over 20 years. Nice in that we work from home and pick our own times to work. Easy to take trips and vacations because we just take it with us. Hubby loves it because it gives him time to work in the yard (his favorite hobby).

We have 3 "kids" a daughter in Portland, who is an Amtrak train conductor. A son in Spokane, Wa who is an IT computer person for Aetna. And, a son here in town who works with us part time and for his Church the rest of his time. He is studying to become a preacher and loves going on mission trips to the orphanages in the Phillippines. They all three are very loving and caring but to me it seems like they try to distance themselves with what I am going through. I guess that is the defense mechanism cause Mom is just fine and will always be there.

You are fortunate to have your children involved in your healing process. It is nice to be able to sit and really talk. I sure don't know how people get through all these punches without family or friend support and comfort.

Enjoy that evening walk and take care !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
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Joined: Sep 2016
Posts: 111
Jo,

I would recommend the pump just for the reasons you've mentioned. Eat while you sleep. Less Hassle, Load the bags / prime it / and turn on. Really very easy. The pump I have is a EnteraLite Infinity. Approximately 6 x 4 x 3", (Small with battery or electric power source. Weighs about 2.5 lbs. In theory it can be carried around while the person is receiving the feed. Downside is the supply source, 1200ml bags and 3 feet of tube makes it a little obtrusive. That's why I sit / sleep during feeds.

Our dog is a mixed breed, Great Dane and Irish Wolfhound. We've been an adoptive rescue family for Great Danes for the last twenty years. He can pull pretty hard when he wants too, but he's fairly well trained.....most of the time! During my recovery I was off work for about seven months. Finn, (our dog), attached himself to me.....slept with me and wouldn't let me out of his sight. Wonderful companion during a rough time.

I'm a civil engineer. Have a MS from The University of Pittsburgh. Work for a large construction company specializing in Heavy Civil projects, (Toll Road construction /. reconstruction / Lock and Dam rehabilitation / Utility construction / Railroad / etc). Very busy, hard work, with lots of stress. I work a lot, but force myself to a maximum of 50 hours per week.

Between the job and kids the To Do List at the house is a distant third and grows longer each day.

It's busy but fulfilling.

I agree that family and a strong support system is essential to successfully getting through these issues. I also understand about family / friends keeping our health issues at a distance. (I don't think they are intentionally acting that way. Probably an internal emotional buffer.)


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
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Posts: 85
I will check out the EnternalLite Infinity pump today. But I do so want to get off the "feedings". I know, I know, don't we all ! Just can't understand why my throat is still so red, raw and swollen after a year and a half. Coupled with not having enough saliva to get anything to get to the back of my throat to even swallow.

Every night I go to sleep thinking it will be better tomorrow. Some days I want to run down the hallway in our house just to get away from the horrible taste in my mouth and the painful swallowing but there are two problems with that: I can't run anymore and it just doesn't work that way. Besides I would be clear at the other end of the house and my glass of ice water would be at the other end....not good !

I get so tired of this. If it is not the mouth/throat problems it is the kidney stones and/or the back fractures. When do we get a break ? Then I feel guilty as there are so, so many people much worse off than I am. This is such a battle. I have always been so precise, organized, and in control but now I am not in control of anything. I get so tired of people saying aren't you eating yet ? Have you tried pudding, jello, cottage cheese, smoothie, milk shake, etc. Duh ! Why didn't I think of that ! I know they mean well but.........

We have 3 dogs, not by choice but you know how that goes. A 12 year old golden retriever, my shadow named Jack-Jack. A kinda mutt named Widget, part jack russel who is also 12. He was a surprise. Hubby went to the grocery store close to closing time. A guy outside the door was offering a free dog......my hubby ALMOST got past him till he heard him say "guess I will put this dog out on the highway on my way home". Poof we had dog number 2. They are both well trained and good dogs each with their own little quirks. Then about 4 months ago my brother (in the wheelchair) had this wild thought to get a 4 year old black lab from the pound named Butch. After 2 days he decided he did not want the responsibility. He was in bed for weeks with a pressure sore and could not get up. Butch would not use the doggie door to go in and out. Hubby even crawled through it to show him how. (now that was a sight to behold). Didn't work so we brought the dog home. He dearly loves my hubby but Butch is not well mannered. He does have a history of nipping 3 people so we have to put him away when the grandkids are here. I just do not trust him and as of yesterday when I came home to my very favorite shoe in the whole world chewed up I don't even much like him. And if you don't understand that, ask your wife about favorite shoes. He is the one I would not take out on a leash. My hubby does not want to take him back to the pound as the dog has not had a fair shake in life. (Such a kind heart he has, he has even put up with me for 43 years and not once said he would take me back to the pound either. Amazing ! ) And, he thinks Butch is a good dog and has "potential.....we'll see about that !

Your job sounds very enriching and satisfying. We sure needed you here last week after hurricane Matthew. So many roads, bridges and dams out. It has been crazy. We lost power for about 24 hours and two tall pine trees. One stopped about 20 foot from the house. We are now in the process of finding someone to take down about 6 more. It was interesting getting from one end of town to the other with all the road wash outs and sink holes but we faired well.

Hubby volunteered with a local Men's group and the Red Cross helping with meals for the homeless. Our meeting place is one of the staging areas for disaster response. They cook and package up the meals that go out to many areas. Just down the street from us they are preparing 15,000 to 30,000 meals a day to hand out along with water and finding places for the homeless to stay. It is just mind blowing! My hubby was in charge of cooking chicken breasts on Sunday and now he says he never wants to see another chicken in his life !

Maybe that is a good thing because while he was in the Air Force flying B-52's the whole crew one by one would call me and ask me not to feed Jerry chicken the night before a flight. Seems as though it made him gassy at high level and they had to put up with the smell. It is not like you can open the window......yep this is probably more info than you wanted to know but we have always teased him about eating chicken. Thank goodness it did not soak in Sunday while he was cooking and we had an uneventful quiet night.

I will close with that story, I know Jerry will be grateful that I don't tell any more pilot stories right now.....but I've got lots.

Take care and don't worry to much about that to-do list.







Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Jun 2007
Posts: 10,507
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The Kangaroo pump or the Kangaroo Joey pump are 2 widely used feeding pumps. Ive used them both successfully for years. All you need is for your doc to write a prescription for you to get started with a medical supply company. There should be a nurse who comes out to show you how to use everything. You can then eat while you sleep or while sitting in the living room watching tv or using a laptop. You should have one of those hospital poles to put the pump on so you can move it from room to room. When using a pump its very important to remember when doing feedings you must be sitting up or if in bed propped up on a few pillows. If not doing feedings on an incline the formula can actually cause aspiration which can lead to aspiration pneumonia which is no fun at all!!!


Hang in there, it really does get easier as time goes by.



PS... @Jo you know what numbers you need to hit every day. PLEASE push to hit these minimums!!! I cant stress enough how vitally important your intake is. If you are doing 3 cans plus 3 cups, what about flushing your tube and taking meds? It all adds up to 6x8oz = you did it!!!! At 48 oz its the minimum you should get daily which is good. But... I know you can push yourself to take in more so you can feel better and recover.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thanks ! I will check into the Kangaroo pump. I have a pole because that was how we were going to go in the beginning but my pride got in the way. I said No way, not going to be tethered to a pole. But, swallowing here.....I think it would be a lot easier to use a pump.

Yes, we both know you are right in that I do so need to get more nutrition and water in me. I fight it every day and every day say I am going to do better. But, hubby got wind of what I am supposed to be doing and he is all over me now to make nutrition and water my first priority. I can bet I will be doing more just to quiet him ! Thanks for reminding me again how very important it is as well as reminding others here the same. And, thank you again for being here for ALL of us !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
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Joined: Sep 2016
Posts: 111
Jo,

Sorry for the delayed response. Had some minor issues to deal with that ended up taking longer and more energy than I had initially thought.

I understand the feeling of wanting to just get away from the daily grind and then feeling guilty because other people do have much worse things to deal with. (If there were a way to take a vacation form my neck and mouth......I would be the first in line to sign up.)

Remember what I had said earlier - We were given this path for a reason. Maybe we will learn why, maybe not. But family and friends are a witness to how we deal with our problems. I would like to think I'm a good model for how to deal with adversity for my kids. Conversely, my voicemail still has my old message attached (pre-speech impediment). It confuses the heck out of people, but I can't bring myself to re-record it. So maybe I'm not as comfortable as I need or should be.

Although it can get lonely sometimes, you're not along in your struggles.

Glad to hear your family weathered the hurricane without too many issues.

Had to laugh about your chicken gas in the sky story....






1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Joined: Jul 2016
Posts: 85
Hi BJ,

Hope you got your issues worked out and back on an even keel. The fall colors must be in swing there by now. I check out fall pictures of the northeast often and am breathless at the golden array. Every year we say we are going to head out and go on a long site seeing trip. Friends sent us pictures a few days ago from a Michigan of a heavy snow dusting they just had. I was blown away.......already ?

We have special friends in Ohio and should get up there to spend some time with them. They come visit us about twice a year. They guys play golf and talk airplanes and the girls shop. So fun every time to have them here.

Our trips usually consist of flying to Seattle where Jerry is from or driving to Orlando to Disneyworld. I love going to Disney, just walking through the gate makes me forget all my troubles and I feel like a kid. I don't do the rides but my favorite is the haunted house. We have had a time share for many years and love it. Have gone to New Orleans and Branson, etc. always fun to get away but nice to get back home too.

The packing is a little more involved now having to pack food and equipment. My "shaving kit" as I call it is tripled in size with biotene, syringes, tape, q-tips, food, etc, etc. but, true to me I have check lists for every different type of trip. I pack days and days in advance then check the bags again. Hubbys mode of operation is to throw everything in a bag that morning. He rightly reminds me that anywhere we go DOES have stores to pick up what we forgot. yes, I do go back and check his work adding a few extras. Drives him crazy. LOL.

We are going on a 7 day cruise in January with our daughter and son in law. So looking forward to it. Although I had envisioned being off the feeding tube by then but it is looking like that is not going to happen. Painful to think of all that food on board and me dragging packages of stinky food around. I do have a scooter and trying to decide if I will take it along. Often they are more trouble than not.

I did start the Real Foods Blend packages on Monday. Oh my gosh how horrid it smells ! For the first time I am glad I can not taste much by putting the nutrition down the tube. I have only been doing about four ounces a day along with the 2Cal. Going slow so I don't have any reaction to it. So far, so good. I am researching how to combine foods to put through the blender. That is far more involved than just throwing stuff together to have the right calories and nutrients needed. Then I have to consider all the foods I need to avoid for the kidney stone formation.

We have had the grandkids (ages 3, 2, and 1) here to spend the night several times in the last two weeks. We love time spent with them but when they leave boy do I sleep ! Actually I am so amazed at how much I do sleep. Jerry always says, I am healing while I sleep, if so I should be superwoman by now.

The local Men's group has closed the disaster operations at our Church but there is a small group of Red Cross volunteers still there. There are a lot of workers out repairing roads and dams and still some families who need help due to mold in their homes etc.

We are having 6 very tall pine trees removed next week from the yard that are in direct path of our house. I really hate to see them go and I am sure I won't be able to watch that operation but better to not hit our house or the neighbors. Sure is expensive to have it done but far less stressful than Jerry doing it on his own.

I need to get back to the sewing room and tackle many back log projects. I make quilts for friends who have lost loved ones from their t-shirt stash. I have 3 sets of 25 to 30 t-shirt stacks waiting for me. Not anything I advertise but word gets around fast. I don't charge anything so I stay busy with that when I have the energy. Problem is each person wants their quilt done yesterday, that does not happen now.

Hoping things are going well for you and that you are enjoying the fall weather. Take care and remember to embrace this path we are on, as you have taught me.

Jo











Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
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Joined: Sep 2016
Posts: 111
Jo -

Actually around Pittsburgh the leaves are only partially turned. We've had a mild fall so far with a fair amount of rain so the leaves are about two weeks behind where they should be. (Just means that I'll be raking and blowing leaves in the weeks leading up to Thanksgiving.)

The issues were health related. Quick bout with pneumonia. But I'm over it now and back to normal. (Actually, I'm feeling better than I have for years. I started physical therapy about a month ago for my neck and jaw. The short term pain is tear inducing, but I think I'm starting to see some improvements. Improved mobility / motion side to side, less cramping and slight improvements in swallowing and jaw movement. I'm not expecting any miracles, but I'm grateful for the improvements.)

I think its great that you are able to travel and don't lose yourself to the everyday trials that come with our health issues. I'm finding that I'm less comfortable than ever at social functions / extended family gatherings. (I've never been anxious in ANY situation before, so this is new to me......and I think it will take me awhile to come to terms with the core of what is causing it.)

Have you started with a pump yet or are you still doing the gravity feed? BTW - I highly recommend unflavored feed. I tried vanilla flavor, because I used to love vanilla bean ice cream and warm apple pie with a dusting of cinnamon. Let's just say the experience is not the same.....not even close.

It seems as though your family has a great foundation in their faith and their daily actions are a manifestation of your beliefs. That's fantastic.

Quilting. My grandmother and her friends used to meet once a week or so to quilt, (and gossip). Some of the patterns she would do were very intricate others were very simple, but they all were beautiful. I'm sure yours are beautiful as well.

Keep up the good work and let me know how the pump is working for you, (when you get it.)

BJM


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
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Joined: Jul 2016
Posts: 85
Sorry for the delay in getting back to you and I do not even have pneumonia to use as a reason. So sorry you have had to deal with that but nice to hear you are on the mend.

Yes, Jerry will be raking leaves and riding his lawnmower here till Thanksgiving too, good thing he likes that line of work. I am busy cleaning and putting the hummingbird feeders away and setting up the bird feeders (well, we should call them squirrel/bird feeders). I love to watch the bright red cardinals at the feeder right out the window, sometimes four or five at once. A beautiful bird visited a lot, last winter and we finally purchased a bird "picture" book and learned it is a type of woodpecker. Upon investigation we discovered they have been quite active in the woods behind our house. No wonder we are having to have trees removed !

Jerry sawed up one of the trees that had fallen during hurricane Matthew even though they are coming to do that when they take 5 or 6 trees down next week. But, he just bought a new chain saw and has been going crazy to get to try it out. Must be a guy thing ! He was more sore than he wanted to admit ......but happy.

Yes, social functions and family gatherings are stressful for me too. I think it is because I try to let on that I am doing so much better than I really am. Now is this to bring them relief or me ? I am not sure. I guess it is the old "I'm fine" refrain because you know they don't really want to hear the whole story.

Sounds like the PT is bringing very good results ! I have poo pooed PT in the past a few times thinking I just did not have time for that but when I have done it I have to admit the results showed. Even though PT is time consuming it would be good to remember that sometimes we just must stop and take care of our needs.

I am still doing the gravity feeding but I have been very slowly working on introducing Real Foods Blend and Liquid Hope to my 2Cal diet. The stuff stinks and does not have quite as many calories as the 2Cal so I am trying to get an extra feeding in a day. When I get this down pat and transitioned to this new "better for you" formula I will call the doctor to request Real Food Blend or Liquid Hope along with the infinity. I find that I sure take change a lot slower than I used to. I guess that is a fear of feeling worse than I already do.

Woke up a couple of days ago just a wee bit not as gagging dry as I have been for so long. So this has been a very encouraging change and much appreciated.

Oh the warm apple pie and ice cream, what a delight that was ! Our son and daughter in law invited us over a couple of weeks ago and served warm (abet) store bought Apple pie along with birthday cake. I took a spoonful of the apple sauce and it was heaven. I hate to say it but I kept going back for another spoonful and another until I had devoured almost all the pie juice. They didn't mind thank goodness but it was a family group laugh the way I was acting ! I need to get in the kitchen and make an "apple juice" pie. I am working on dipping a spoonful of banana nut bread in soup lately and getting that down without a lump in my throat for two hours. Four or five bites is quite enough for now but a real treat. Funny how eating is so much work.

Please take care of yourself, no more pneumonia and keep up with that physical therapy!





Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
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Joined: Sep 2016
Posts: 111
Jo -

I grew up in rural area nextdoor to my grandparents. Between my grandfather and my dad, they taught me everything. Rough and finish carpentry, cabinet making, plumbing, electrical, roofing, how to work on engines, hunting, and, of course working with chainsaws.....There's just something so satisfying about a good days work with your hands. Hard to explain unless you experience it on a regular basis.

I felt so good last night after blowing all the leaves from my yard I grabbed my axe and tried splitting some wood. Probably not the best idea!!! Not quite ready for that activity. Maybe I'll try again in few months.

The apple pie brought back some memories. My grandfather and I used to pick apples and peaches form their orchard and my grandma would make apple butter / apple and peach pies / apple dumplings / canned apple sauce / peach jelly. I really miss her cooking. Home made bread with real butter and apple butter was a great treat!

My grandparents were very simple, honest people living on very limited means. They were married during the depression and raised a family as best as they could manage. They were by far the strongest most decent people I've ever known and I was lucky enough to have spent a great deal of my youth around them.

There are a lot of nice people in the world.....far fewer GOOD people.

I was blessed in having a strong family and great friends throughout my life. Conversely, I STILL haven't been able address the issues driving my anxiety at family / social events. You're right about the "I'm fine" line by the way. Nobody really wants to hear the gory details so why "rain on their parade". Here is what I'm hoping for - the increased energy and benefits from the PT will reduce the intensity of the emotional and mental issues I'm stuck with. Thanksgiving will be my next attempt to work through it.

Keep trying different things with your feeding. You will eventually find something that works well for you.

Great news about your increased saliva in the morning. (Now there's a sentence I never thought I would write!)

Get back to the PT....It will help in the long run


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
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Finally getting the chance to reply. My brother has been in a wheelchair for 43 years. He lives alone and has been in pretty good health until recently. He has been dealing with a bed sore on his butt for a few months. we think this is due to air loss in the cushion. He had to be in bed for several weeks to clear this up which caused an open sore on his right hip.

Trying to clear that up he over-laid on his left hip and now has a nickel size open place on the left too. He is now reduced to bring on one side or the other for only about one hour at a time then has to flip back on his back which he hates. He can't do anything in this position and so bored out of his mind. I have been staying at his house for a week (seems so much longer!) to help him. We have had a wifi problem at his house that is hopefully fixed now so I can read and reply on my iPad.

Read your post of your childhood with great envy. I close my eyes and think how wonderful that must have been. I had pretty much the opposite start to life with 3 sisters and 3 brothers. I am the baby of the family. 1 sister and 1 brother were given away to relatives as infants long before I was born. I was lucky or unlucky (I am not sure which) that I was not given away. We were very poor due to poor money management on my parents part and grew up quite hungry. My brother in the wheelchair is 11 months older than I am and we are extremely close. During lunch in grade school we would hide on the playground in the bushes so no one would know we did not have a lunch. It was so exciting to be invited to a girlfriends house to spend the night knowing I would have a meal.

My parents did not drink, gamble etc they just only thought of themselves such as going out to eat without us and nothing to eat in the house. They did not fight or argue they just did not pay any attention to us being around. There was always cigarettes, coffee, cream and sugar in the house. I don't know how we all didn't grow up to be robbers or murder's ! None of us ever had a birthday cake or school supplies. We moved every few months, usually in the middle of the night and I never went a whole school year at the same school. No grandparents or other relatives were in our lives as we were the black sheep. I could go on and on with stories but won't.

I am not bitter about it as I feel it made me a better stronger wife and mother to our children. I can surely say our kids were never ever hungry and got lots of attention. And....most important....they were told they were loved every day !

It is a beautiful thing to read your memories and know you received the love, teaching and caring that all children should have.

I have fallen apart on my feeding goals while at my brothers house. Just using the 2Cal and lots of water thru the tube. Christine would be proud of my water intake. There is nothing much to do while here so I hit the kitchen counter stockpile of cans of nutrition and jugs of water often.

I am SO glad that physical therapy is helping you ! The painfulness while doing it seems to be paying off with increased mobility and just the mental knowledge that you are doing something for yourself is so important. Just stay away from that pneumonia !

Gathering recipes here for Thanksgiving and looking forward to baking and cooking. Not the crowd that comes but I will get through that part too. My favorite part of it all is handing out containers and containers of leftovers for them to take home. I laugh as I type this as I realize I can't stand to have space in my pantry, freezer, or refrigerator and want everyone else's to be packed too ! Guess I am a food hoarder even though I can't eat. Funny how your past is always kinda there.

I must get busy with finding a proper dentist. I have looked and looked on line trying to find one who is knowledgeable with post radiation issues. Looks as though we might have to travel a ways to find someone with this expertise. I like my dentist but he is just a dentist.

Hope you are having a good week !



Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
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Joined: Sep 2016
Posts: 111
Jo-

Good to hear from you. (And really happy you are able to help care for your brother.)

Actually, my grandmothers life was very similar to yours. Both of her parents died when she was very young and was handed over to an aunt that did not want her. My grandfather was the eighth or ninth child to a farmstead family and was born and raised to work on their farm. Neither of my grandparents, (paternal side), had anything past a sixth grade education. They had a rough life together but remained committed to each other throughout. Raised 4 sons and proudly described themselves as solid stock country folk. I've tried to instill some of those same basic skills I was taught to my son and daughter.

I think about their, and your, experiences and how strength of character is developed from facing adversity. I feel that a person has to experience some adversity to truly enjoy the successes in life.

Keep up the water intake! But you need to push yourself on additional calorie intake. Very Important!

The PT has taken an interesting turn. All positive. They have been working down my neck and into my traps and upper back. The soft tissue response has been great. I'm getting slightly more left to right motion and the pain has lessened somewhat. The joint and muscles associated with my limited jaw movement has started to loosen as well. Each week I have the ability to open my mouth a little wider. With the improved opening, I'm able to speak with more clarity.

Have fun with Thanksgiving! I'm taking a grin and bear it attitude and although I'm looking forward to seeing my extended family, I think I'm going to limit my time to a few hours and leave when everyone starts to nap in front of the TV during the football games.






1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Nice to hear from you. I am so excited upon hearing your latest PT report ! Best news I have heard all week. I think you are on to something there in that perhaps ALL warriors of these after effects should take heed. Why is this route not standard for all patients ? It is such a shame that patients are almost completely cut free from medical information when they finish chemo and radiation. We all seem to be swimming out there on our own.

As I have told you no one ever told me about fluoride trays or when I went to the nephrologist with kidney stone problems I was just told you need to do this and this.....look it up on the internet because I don't have any handouts on it.

Come on, that is laziness. I was the clinic supervisor in an over 100 provider office for many years and it does not take much to get file folders, assign a filing cabinet, print out handouts and have them available for patients. So many people won't follow through or grab bad info from bad sites. Perhaps things will get better with the current healthcare system soon because right now most offices are more concerned with how many patients did we see vs how many did we REALLY help. Sorry, my soap box is very tall on this issue.

You are so right about instilling strength of character in your children. I can tell it is important for you and what a gift you are giving them. I see the protesting going on yesterday and today as some did not get their way and sadly shake my head. There are some universities (even a law school) giving students the day off because they were "traumatized". It has gotten so crazy. Life is going to be so tough for them.

Ahhhhh, Thanksgiving thoughts.....I so agree, a two hour window would be great. I have had 3 people call this week to tell (not ask, mind you) they are planning to come to our house for Thanksgiving. Now where were they all year ? I guess that is my jaw PT, cause it keeps popping open every time I think of it !

Still at my brothers as he plays pancake turning from side to side then on his back every two hours. Bed sores are a super concern for quadriplegics as the circulation is so compromised. So, healing is a very slow process. When I am not turning him or making coffee or cooking I have had a great time playing on line (poor Amazon) ordering Christmas gifts as long as the internet stays up and the checkbook doesn't completely collapse. I have to be better this year as I usually get so excited to give the gift that I do it early then I am out there with the masses on Christmas Eve trying to grab something to wrap.

You mentioned your grandparents only had a 6th grade education but they must have had a lot of common sense and that is what really gets you through life I feel. We have known guys who had master's degrees who could not tie their shoes or make a grocery list let alone balance their checkbook. Yes, usually education does get you a better job and living might be a little easier but common sense, a pure heart and honesty tops it all. My parents wanted each of us to quit high school as soon as we could so we could go out and get a job and hand them our paychecks. I was the only one who graduated from high school and then I went on to college after I got married. I worked all thru high school and handed over my pay check as well. Only once did I cash my check and bought some shoes with some of it......there was hell to pay for that one till I got my next paycheck for them.

Yes, again is misspelled, missing the second a because when I signed up long ago they would only let you use 10 characters. Funny thing when I found my brother after about 15 years his e-mail address was something like up at night we couldn't believe it !

Take care and keep that PT rolling !




Last edited by ChristineB; 11-10-2016 06:48 PM.

Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Jun 2007
Posts: 10,507
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When shopping on Amazon, any purchase, big or small PLEASE first click on the Amazon box (towards the top right of any page). By going thru this link, OCF receives a small kickback. It doesnt cost the consumer anything and helps to keep our small nonprofit running.

Thank you!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2016
Posts: 111
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Posts: 111
Jo -

Hey! Totally agree with the "swimming on our own" summation. I do understand that the ENT's and Oncologists are entirely focused on their portion of the process and once complete, their talents are needed for the next patient. However, that doesn't mean that they couldn't provide a better transition to the next step in recovery.

But, toss in the insurance issues and perhaps not having adequate PT services available either within their system or in some cases within a regional area and the whole concept gets very convoluted.

I guess there are no easy or good answers and therefore any recommendations regarding follow up therapies are contingent upon each particular ENT.

(I've found that the Physicians Assistant is usually a better starting point regarding potential follow up therapies.)

On that note PT is proceeding well. Jaw movement is improving and as that mobility increases, communication improvements follow. Head mobility is also improving and while the jaw and neck cramping is still ongoing, they are slightly less frequent.

How is your PT progressing? (Not including responses to self invited diner guests!)

How is your brother doing? Hope his skin has started to recover.

Any progress with getting a pump? I'm curious to hear if it helps increase your daily calorie intake.

Enjoy Thanksgiving!



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Hi BJM, was getting concerned about you. Was afraid you were so busy with day-to-day that you were not taking time out to relax, read, and write. Or your dog was requiring a whole lot more walking.

On Sunday we finally talked my brother into coming to our house so we could take care of him. It is SO nice to be home after 3 weeks. But, he is loads of work, not his fault just part of dealing with a quadriplegics needs. The bowel and bladder care added to not being able to reach anything that is within arms length while he is flat in bed makes things pretty rough. He is healing well and should be able to go home on Saturday we are hoping. He is fighting with the VA for a new special wheelchair that he can lean back every few hours to almost flat. That will take pressure off the hips and butt. It was approved in July but the VA is never in a hurry to do anything. We are hoping it is delivered very soon.

I have been baking up a storm....throughly enjoying it but very worn out tonight. I think I hit a brick wall but it is 2 am so I made myself turn off the oven and almost crawl to the recliner. Got brave and tried a few new recipes but have to wait till Jerry wakes up to find out if they are "keepers". He is my taste tester now, and thank goodness he enjoys that role.

Yes, work is needed on Doctor/Patient transition. My oncologist said I did not need to see him anymore a couple of months ago but I said oh no you don't get rid of me that easy.....I still have issues due to the chemo and radiation, a port and a feeding tube. My FP is leaving her practice the 1st of Dec and I am trying to find a new FP although she has been pretty much useless anyway. After filling out scads of paperwork for 2 FP offices that then turned me down as a new patient due to my insurance coverage this leaves me with only the kidney doc who is worse than useless.

Having worked in Doctors offices for many, many years I do so agree with you that most PA's are great. They are so much more through and whatever they do is also signed off by their preceptor. It's as if you have two sets of eyes on a problem.

I was more than elated to hear your PT is going well. It must be wonderful just to have more jaw movement and head mobility increased ! Now to lessen the jaw and neck cramping but you are even seeing improvement there too. Such great news !

I have not gotten anywhere with securing a pump. I called the DME and they said I could only have a pole for gravity feeding with my insurance. I say baloney to that and have next to no faith in Lincare, my DME. They will tell you anything that suits their bottom line. They even told me I could only have canned nutrition such as Ensure when I asked for Real Food Blends or Liquid Hope. I knew better than that. I have been busy with my brother and have not checked it out. Tried to when I got the port flush at the oncology office on Monday but the nutritionist was out that day. Got to work on that next week. Since my FP was writing my oxycodone script I need to find another FP before I run out. Now THAT is scary.

Good luck reading this, I did not proof read, to sleepy !

Wishing you and your family a very Happy Thanksgiving !



Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 111
Jo -

Busy would be a slight understatement!

How did the search for a new FP turn out? (Hopefully well.)

You are correct about the pain meds. I do worry about the RX being transferred to another Doctor not as familiar with my history.

Is your brother still improving?

How was Thanksgiving? I was able to get through it without any major issues! (The food did smell and look great though!)

Bit of a plateau with the PT. I'll work through it.....always have



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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