Noob with floor of mouth cancer

ozymandible

https://www.thefoodieaffair

https://www.thefoodieaffair.com/sweet-potato-soup-with-coconut-milk/

Dinner tonight.  Yummy!  (maybe cut back on Garam Masala tasty but has some heat to it)

ozymandible

Took a can of apricot nectar,

Took a can of apricot nectar, a cup of milk, a scoop of vanilla protein powder, vanilla instant breakfast, coconut, almond and orange extract and blended it for dessert.

ozymandible

I did really good with the

I did really good with the liquid diet.  They took out my NG tube today so I'm thrilled about that.

My oncologist just informed me that the tumor board met and determined I will need radiation and chemo because there are fragments of cancer in my bone.  I sure hope it works.  I really don't want to do the bone transplant or get some kind of necrotic deal going on in the bone because of radiation.

I am going to go local for it to make things easier on my family.  There is a cancer center just a few blocks from my house.  The party will probably start in a month or so.

Any experts out there that can talk me down?  A little discouraged here.  

Thank you for reading.

ozymandible

My cancer seems really

My cancer seems really aggressive. 

wbcgaruss

ozymandible said:

I did really good with the

I did really good with the liquid diet.  They took out my NG tube today so I'm thrilled about that.

My oncologist just informed me that the tumor board met and determined I will need radiation and chemo because there are fragments of cancer in my bone.  I sure hope it works.  I really don't want to do the bone transplant or get some kind of necrotic deal going on in the bone because of radiation.

I am going to go local for it to make things easier on my family.  There is a cancer center just a few blocks from my house.  The party will probably start in a month or so.

Any experts out there that can talk me down?  A little discouraged here.  

Thank you for reading.

ozy

Hang in there this is not a time to let discouragement set in. I don't know exactly how to explain it but you are seeing the now and the treatment ahead so you have to look beyond when treatment is done and you are cancer-free. All on this site have been through it when things don't look so good because of our mindset. It is normal to be going into this cancer situation and worrying and thinking the worst we all did it. Your mind races with endless scenarios. Just calm down as best as you can and focus on what is needed now and the next step in the process. Trust in your cancer team as they are doing the best they can to get you treated and through this and make you cancer-free. Stay busy and keep focused on the next step to get through this and day by day you will get your treatments finished and before you know it you will have completed your treatment plan. ozy we have all gone through the dark times with this but you don't stay there very long just move on. Believe me, there are a lot of highs and lows with cancer. When I was in the hospital in 2019 I thought I wasn't going to make it out but here I am by the Grace of God. So stay strong, stay positive, trust in your team, above all trust in god and pray a lot and NEGU (Never Ever Give Up)   Take Care-God Bless-Russ

wbcgaruss

ozymandible said:

My cancer seems really

My cancer seems really aggressive. 

ozy Read This Link From

Duggie in our group just posted today and celebrating 11 years since completing treatment and he has some positive thoughts and advice for you and all of us-Take Care-God Bless-Russ

https://csn.cancer.org/node/323207

 

ozymandible

Thank you so much.  I hope I

Thank you so much.  I hope I can give back somehow.  

ozymandible

OMG what an exciting morning!

OMG what an exciting morning!

I had half an omelette for breakfast!  Buttery, with dill and cheese.  

I mashed it up real good with a fork and took bites about the size of a kidney bean.  I tilted my head a bit toward the good side and chewed very slowly and carefully so as not to bite my tongue.  Kept having to remove bits from the other side and washed it down with coffee.  Last week I really couldn't picture myself doing this.

Still have soup to finish but so thrilled about being able to eat real food.

Am being very mindful of dental hygeine and brushing after each meal instead of just once or twice a day.

Oncologist is referring me to a more local clinic for radiation and chemo.  I don't believe that will start until the end of the month though.  Mouth still needs to heal.

ozymandible

One more thing....

One more thing....

UCSF was very generous with post op supplies(bandages, gauze, Aquaphor, feeding supplies)when they discharged me but wasn't very good at tending to everything at first and was a little wasteful with wound care supplies so I ran out of some things.

You can order just about anything you need from Amazon though.  Stuff your local Walgreen's isn't going to have.

People with sensitive skin listen up!  One of my nurses put me onto Cavilon No Sting Barrier Film-protects against body fluids, friction, incontinence and ADHESIVE TRAUMA.  Loving this stuff because bandaids and adhesive absolutely wreck my skin.  Made by 3M.

It's expensive but so worth it.  Little foam pads on or off stick applicator, individually wrapped.  You dab it on wherever you'll be putting tape or bandaid and let it dry.  Reapply as needed when changing dressing.  The tape or bandaid will come right off with no pain or skin damage or residue left from adhesive.  If you have very sensitive skin spend the money and get yourself some of this.

ozymandible

Couple of quick victories I

Couple of quick victories I want to mention.  I can take pills now so back on my immune boosting vitamins and supplements and no longer grinding up my RX meds to slam in a shot of water. (yuckola!)

Slept in my bed last night for the first time since I've been home.  No more pillow fort in the recliner!

Unfortunately my husband is still in the hospital.  I have prepped for his return by clearing out the mountain of tube feeding and wound care supplies that were stacked all over his bed.  Was able to move some things around(I have a huge box of furniture moving pucks)and make the living room and dining room walker friendly for him.  It might be a while before he comes home though.  He is still sedated and intubated.  

The wound on my thigh no longer requires a dressing.  Every once in a while I throw some Aquaphor on it.  The hole from my trach is almost closed.

My mouth is still very swollen.  I am using manuka honey in my coffee hoping to speed up healing of stitches.  Will use before and after radiation when that starts.  Drinking turmeric tea twice a day hoping to bring down any swelling and inflammation in my mouth.

My arm is healing well but taking forever.  

I don't know what I did the other night when I was brushing my hair but I nicked something on my neck or turned it too hard and it bled just a bit.  Scared me.

Finally doing normal type things.  Played Monopoly with the Seeing Eye Kid the other night and helped her sew up some sleep shorts yesterday for when the weather gets warm.  She has been pulling weeds out back and watering what's out there.  I can't work in tthe yard now but she said she would prep the garden spots with her brother this year.  Her brother has been helping with the yards.

We haven't done grocery shopping since before I was hospitalized.  My son bought some milk, juices and bananas and heavy cream and instant breakfast so I could make smoothies but haven't needed much else because pantry and freezers are well stocked and I still have lots of canned and dehydrated items.  My daughter and I could hole up here for months and months and we eat cheaply with whatever we've got.  We are creative and cook a lot and we both hate processed foods and most restaurant foods.

I guess that's about it for now.  I'll be back if there are any new developments.

Thanks for reading.

wbcgaruss

Well ozy

It seems things are improving for you and for that we are glad. I certainly hope and pray that your husband's condition starts improving quickly and that he will soon be able to get back home as I am sure you miss him. Take Care-God Bless-Russ

ozymandible

Got a craving for tiramisu. 

Got a craving for tiramisu.  Daughter made sugar cookies but with half brown sugar.  I took about half a cup of cream cheese and smushed it up with some coffee and a spoonful of sugar.  This was spread onto two sugar cookies and we soaked it in coffee to soften it. She had whipped cream on hers but I added enough cream and coffee to turn mine into a liquid.  It was good.  We're planning to have it again.

I can eat just about anything if it's thoroughly blended and not too thick.  I have to go in for a swallowing study next month so I will be doing liquid until then.

wbcgaruss

I Had Swallowing

Studies done already and they show exactly what's going on when you swallow. I think you can look to the side with your eyes moving but I think they might want you to keep your head straight to start out. I also think it is recorded and they can play it back to you or study it themselves to try to determine where improvements can be made. They determined that if I turn my head to the left and down that is my best swallow. Back after shortly after my first cancer i had swallowing problems and ended up having a total of 4 dilations which you may want to mention as they helped me. Take Care-God Bless-Russ

ozymandible

Oh thank you for letting me

Oh thank you for letting me know what to expect.  Maybe I don't go too much farther with the food until they do it.  Supposed to be next month.

No word from radiation facility yet but referral was only done just last week.  I have a zoom meeting with the speech therapist at the end of this month.

wbcgaruss

I Would Say

Eat whatever you can but if swallowing certain food items gives you difficulty stay away from them and eat what you can easily handle for now. You don't want to get anything stuck as I did. After my first cancer, I was eating again and had been getting most everything down and had eaten turkey before. This was probably around Thanksgiving and we had leftover turkey sandwiches and I got a piece of turkey stuck and it wouldn't go down or come out so I had to go to the emergency room and they put you under and a gastrologist removed it. After this is when I got the dilations. Dilations are done to expand your throat opening a little bit at a time because too much will tear a hole or cause damage especially to areas where you have had radiation and the tissue is more stiff not as flexible sort of like old or older leather gets. The swallow test is easy and it tells them a lot. Below is a video showing one. In the video, they show an internal shot of how your epiglottis and other parts work but you won't be getting that you will be just sitting in the fluoroscope like the girl in the video and swallowing different thickness liquids while they watch and record how your swallowing is working. Again I think you can eat what you want but if it is uncomfortable for you don't push it.

Watch this video first  https://www.youtube.com/watch?v=dRvYL_TAtKI

Then this one

https://www.youtube.com/watch?v=xu_YYOAlZEw

Take Care-God Bless-Russ

ozymandible

Thank you for the YT links.

Thank you for the YT links.

I do remember reading about the piece of turkey that got stuck-makes me extra careful every time I eat.  That must have been really scary.  My kids cooked dinner tonight.  I didn't think I'd be able to eat any but I did.  The Seeing Eye Kid made her fabulous Chikfila knockoffs again and the boy brought waffle fries and mozzarella sticks.  I won't do this every day but omg it was good.

We are scheming on pancakes and sausage and biscuits and gravy-appropiately thinned down of course. 

I bought a food mill but I still use my trusty stick blender for most of what I make.  You don't have to spend hundreds of dollars on special blenders-a quality stick blender will do a lot!

ozymandible

My husband passed away

My husband passed away recently so I've been too busy to post here. It has been extremely hard on all of us.  We made part of his final arrangements but I will have to wait on the rest until I get the finances in order.

  I have to continue our health insurance so I can finish my cancer treatment.  I am making my cancer treatment the number one priority right now.  There is so much to do regarding junk in the house-old papers and whatnot, moving accounts into my name and trying to gather old family photographs and artifacts to split amongst his blood relatives.  He kept every piece of paper that ever crossed his path all his life.  There are tax returns and check stubs almost as old as me.  Going to get it done before I start chemo and rads which is sneaking up on me quick.  I can't be messing with this during treatment.  It will definitely stress me out and might even make me sick.

Our family isn't very large and many of the people he knows are multiple hours and states away.  The kids want me to just concentrate on my treatment and leave things to his brother and daughter.  I will make the rest of the arrangements but after that I'm out.  This is all wearing me out and I haven't had a day yet where I don't go in between curling up in a ball and wailing or feeling like I'm going to vomit.  What little time I spent with them was extremely draining.  My husband would want me to focus on my treatment plan.

I have a list of dentists so I can make an appointment for me and my daughter.  Consultations for chemo and rads will be happening soon.  Don't know if I should go to the dentist before or after my consultation?  Do they have some kind of checklist or forms the dentist has to fill out?  Or do you just go to the dentist and explain that you have oral cancer and will be starting radiation?  What about the flap in my mouth?  What if they have no idea what to do about that?  Do I try and find someone who has dealt with oral cancer patients?

Thank you for reading.

wbcgaruss

You Certainly

Have your hands full. My deepest condolences on the loss of your husband. This was certainly an extra strain on you that you didn't need. It sounds like you are dealing well with what you have at hand. As far as dentists we have been going to our dentist for many years and he is very knowledgeable about people who have had or are going to have cancer treatment. I would call the offices and find the dentist with the most experience and even one that specializes in cancer folks. But they don't have to be a specialist just a good dentist with a good understanding of how cancer treatment affects things especially radiation. It can greatly diminish saliva causing a big imbalance of the natural enzymes and saliva make up in the mouth. Many of us find we have to really be fussy when it comes to tooth care now and lots more brushing, etc. Wishing You The Best-Take Care-God Bless-Russ

ozymandible

Thank you for your kind words

Thank you for your kind words and good advice.

You are such a help to so many here.

ozymandible

Here's a heads up for anyone

Here's a heads up for anyone who is on a similar path to mine.

My surgery was on March 9 of this year and my neck still isn't all the way healed.

I was given stretching and swallowing exercises and I believe it strained my neck enough to weaken the very end of the incision.  There's an angry reddish purple blister looking thing that wasn't there before.

The stitches absorbed or wore off a couple weeks ago but still....be careful you guys.

General update:

I started using coconut oil for my forearm scar and that seems to be working better than the Aquaphor they gave me

I almost don't have to use pain killer. I don't need oxy anymore and no more chills or other withdrawal symptoms.

I still have to do some gabapentin for the arm and my neck though.  It doesn't really hurt that much it's more annoying.

The place on my thigh where they shaved off the patch for my forearm is still angry and purplish red with one small white poodle shaped scar at the bottom of about a 3 x 5 rectangle.

The hole is completely closed where the trach was.  My mouth is still kind of meh, I guess it will always be.  They tell me the free flap should shrink a bit with radiation but it is still kind of a foreigh object but I am slowly getting used to it and I'm able to eat just about anything I want now and people can understand everything I say unless I'm wound up about something. 

My weight is still stable, I can bathe in the tub now(yay!)but I still get kind of worn out sometimes.  All in all doing quite well on the cancer front.  Still having a hard time with all the grief of being a widow though.  We were supposed to both finish our cancer treatment and look for a nice affordable place to hide out of state. And there's so many little details to work out to move ahead with everything.  COBRA, Marie Kondo-ing the snot out of the house in case I have to sleep in my SUV at a relative's house to afford everything...  So much stress.  

I still haven't bought his niche yet.Too much financial stuff to straighten out.  Might be a good long while before I can.