Now that you mention that I do remember you saying you love to cook and bake even though you don't eat any of it yourself. And wow on you doing competitions in the past! That's pretty remarkable! I make a mean homemade chicken and dumplins but I can't really take the credit for it. I found the recipe, it's not my own! Everyone I ever make it for loves it so it doesn't matter that I didn't come up with it! I'm also known for my popcorn balls around Halloween. What do you love making the most? I think pies are fun! I rarely do it but the smell in a house when a pie is baking just makes a person happy to be alive!

Awww I hate to hear you talk about trying to decide what's going to 'kill you.' I get it though you have every right to feel down with all that you have been going through. Just remember, we all can feel bad from time to time just as long as we don't park the car and stay there.

What is the aspirations caused from? Did they take tissue around or from the epiglottis during one of your surgeries?

If your in too much pain, I hope you're taking something for it. No need to be suffering if there's an alternative.

Much love,

Laura

Hi Crystal!

Haven't heard from you in a while! Hope all is good or as good as expected under your circumstances. Just letting you know I've been thinking about you and hoping for speedy healing.

Laura

NO. I'm not healing.... The left side Floor of mouth wound is Infected with yellow pus, I have fever, swelling and Heat in chin & neck,....

Edges of wound are Retracted and Open, not healing. Pus leaking out. Yuck.

See, this was side of my lower lip cancer which extended down into chin/ jaw, and my surgeon reminded me that I got a knock down Very Heavy dose of Radiation to that very specific site. ( they make it a heavier dose, at tumor sites).

As a result, the tissue there was robbed of blood supply and oxygen....and it's not healing.

I'm in a lot of Pain and All my Sutures are still In !!

Later,
Crystal

I also need to update about my pathology report, and I will..... But here's a taste of it "Residual tumor ( this is what was still there and actively growing back from April 11 surgery, just one month prior)
" Residual moderately differentiating Invasive squamous cell carcinoma, Keratinizing type. "

It gives it's dimensions. -- this tumor originated in Floor of mouth and grew up into my tongue Flap..... But here is the kicker-- the anterior margin ( front margin, which in this case is right behind my right bottom lip-- is LESS THAN 1 MILLIMETER)

okay, with my huge Primary tongue tumor, my posterior dorsal margin ( In the back)- was also Less than 1 Millimeter. Not good!!! You don't want that close a Margin in the back where it will recite and go down your throat-- Which is Exactly where my Recurrences were, Base of Tongue extending down.

Less than 1Millimeter is NOT a Clear Margin, my Radiation Oncologist told me. He said that's Way Too Close. He said that a Grey area.... It's too Close to be considered a Clear Margin.

It was yet another reason, with my Primary tumor, that I had to have Radiation. ( the other reasons were my tumor size of 6.3 Centimeters, and that I had PNI. )

So, what do you guys say, about this? This most recent tumor from Floor of mouth that invaded my tongue flap, also had a Margin ( front margin) of Less Than 1 millimeter.

Is a Clear Margin still Clear, if it's that Close?? My Radiation Oncologist says no, it's not clear. It's too Close.

Also, please read my previous post here, about 2 of my surgical sites Not Healing & being infected. Edges of wound are retracted and not closing up. Another bad sequelae of doing surgeries after Radiation.... But we had no choice,!!!
But now, I have a nasty non healing wound and it's so painful.

My surgeon re emphasized to me that this was a Extensive surgery, to the entire Floor of mouth and to tongue flap, and that he went 2.2 Centimeters down through my Floor of mouth.
The area that's not healing took a very Heavy dose of Radiation, in early 2018. For the specific tumors that were there then. So, the tissues there are damaged.

Crystal

So good to hear from you! But....I wish you had better news to give! I'm so sorry Crystal! I can't imagine what you're going through. Has anyone mentioned HBO treatments? My Mom had breast cancer and the incision under her armpit where they took lymph nodes wouldn't heal and they had her do HBO treatments to help close that wound. She doesn't think they did anything but that wound didn't heal until she did those treatments.

I too am surprised about your margins being so narrow. I'm going to guess they did that to save you some tissue and try to preserve the functionality of your lip/floor of mouth. I'd say ask the doctors at your next appointment because that is very odd!

As far as pain, you know what I say, don't be afraid of taking the pain medication! I'm still on my oxycodone but it's out of necessity. I can't sit at work and be dealing with an earache and/or throat pain!

I hope your dogs are a source of comfort for you right now. My cats kept me company when I was home and laid up on the couch.

I’m sorry for your troubles, Crystal! I had thought about HBOT also, but where I was at, several locations, that all my doctors were against it due to active cancer. It wasn’t until i was clear of cancer that they did it. There are other doctors, none I know, that didn’t follow that rule or it’s assiciation with cancer. My first time with HBOT I did have a recurrence afterwards, which could have been a coincidence, but has me as a believer.

Thank you Paul !!

You have been so good to me, following my crazy ordeals.... I really appreciate all your great,advice and support! It makes a world of difference to me. Just believe me, it does.

My surgeon did not mention trying HBO dives-- it may well be because of the association with "feeding" active cancer/ causing recurrences. And obviously, I have a relapse now of my SCC.

And I've had to put so much stuff on hold--- my Modified barium swallow study ( my 3rd one) can't be done now, until I heal. Nor vocab my next esophageal dilation.
I guess I could get my eye appointment though. ( I have Radiation induced Cataracts, from Scatter. I'm a tiny person and I see how this could happen)

My GI doctor emailed me today and said the Endoscopy Unit has been asking about me & that they miss me bringing them desserts !! He told me that he's praying for a speedy recovery....
I go back to my surgeon June 26th. All sutures stay in ( most are the dissolving kind) and my tongue Flap is still sutured down, to my bottom lip. I can see several of the sutures on top. A tied one is on top of tongue, but he's not going to release anything yet, because of not healing.. I've no idea what it will look like, when the Tongue is freed ...

But I can say right now, that there is Nothing Normal, anywhere in sight, in my mouth.I

Crystal

Hi Laura,

What did you ever find out about the breast lump? Have they biopsied it yet? Please let me know...

Crystal

Hi Crystal,

I have the orders for a mammogram and ultrasound and the results of those will determine if I need a biopsy. I also have an order for an ultrasound of my thyroid as my PET scan showed a nodule there. I had my appointment with my oncologist and he says he doesn't expect scans of either one to show cancer. I guess I can count on that a little bit for piece of mind. I plan on scheduling those to take place sometime next week.

So what kind of yummy desserts do you normally make to take to your appointments? I've thought about doing this before but I'm always scared it will go to waste because people may not know my cleanliness in my kitchen. They don't realize I worked for 4 years in the kitchen in a nursing home and had to take classes on cleanliness and sanitation and all that jazz so I definitely follow safety protocols when I cook or bake.

Laura

Laura,

I'm glad you are getting the imaging done. Glad the oncologist reassured you, as well.

I have very suspicious "hypodense" lesions on my Spleen, which are suspicious for metastatic cancer. They found them during a CT with contrast, last year in the emergency department. But no one else seems concerned, so I've ignored the issue..
And it's been a year, since I've had any blood work! So, I need to get back in with my Medical Oncologist soon I guess.

The swallow technicians are actually Amazed that I can swallow liquids. They told me that somehow, I taught myself to swallow using other muscles. They said it's remarkable really.

But, I am " Aspirating with Every Swallow ", they said. I've had 5 Aspiration pneumonia and now trying to heal from surheries, so I can get my next MBS swallow test and dilation also.

Crystal