Noob with floor of mouth cancer

ozymandible said:

I finally have my PET scan 

I finally have my PET scan  scheduled for around two weeks before surgery date.  I have gobs of telephone consults scheduled- a dietician, hospice/palliative(I think this is for feeding tube), anesthesiology guy, two follow ups? and a visit with the reconstructive surgeon.

Still helping my son prep for his move.  Yesterday my daughter and I went and ripped carpet out of his future room after getting the bed moved out. He was working yesterday.  He has little or no time off available at this time and he has always been right there for us whenever we need something and will likely be around a lot to help my daughter look after my husband if he needs help showering or something on a bad day.  I want to let him know how much I appreciate that by  giving back as much as possible before I go in and become worthless for a while.

Eating is getting more difficult.  I was just about liquid only yesterday.  I did an enormous breakfast shake with instant breakfast, cottage cheese, yogurt, marmalade, almond milk, cardamom, cinnamon, ground flaxseed, flaxseed oil and a banana.  Had a doctored up glass of buttermilk(turmeric, cumin, salt, pepper and a hint of garlic and onion powder)in the afternoon and made broccoli cheddar creamy soup for dinner with grilled sandwiches for whoever could chew.    Essiac tea before bedtime.  So far no weight loss.  I'm such a goof when I get cancer I gain weight?  Can you believe it?  Haha.

Anyway, the seeing eye kid(my daughter's nickname since the awful glaucoma attack)is up so it's time for me to get a cuppa and rustle up some brekkie for everybody.  Can't decide between oatmeal, malt o meal, grits or scrambled eggs.  Anything requiring even a hint of chewing will be ground up-I just can't take it anymore.  Been using the old heated rice sock a bunch at night in down time the referred pain is getting to be a real nuisance.

If I don't stay really busy I might get really afraid when I think about the upcoming surgery.  I know it's necessary and will probably relieve all this nerve pain I just can't stand to picture the actual procedure.

Talk to you all later.

 

That's the way it is. You start out finding you may have something going on and have an appointment or two or maybe a consult and the next thing is suddenly you have a hectic schedule of scans, consults, meetings, etc it gets to be a lot but just stay on top of it.

Besides, it looks like it will be easy for you as you are so busy all the time anyway. You must have loads of energy and that's great.

And please don't feel this way as you said in your statement--(before I go in and become worthless for a while) because you are not and no one is worthless as you are just going through a treatment where you can't just be yourself as always because this treatment is difficult, sometimes very difficult and as you said you are giving back as much as possible so you will be switching roles and they can give back and help you. Because they love you and you love them and that's what we do.

I am glad you are keeping busy and getting ready for the final preparations like the PET scan and other things and you can be comfortable that you are as prepared and ready as you'll ever be. I am also glad you are finding ways to get calories in no matter what.

Thanks for keeping us updated and I believe it helps you to write it out and keep focused and organized.

Best Wishes-Take Care-God Bless-Russ

You are handling your pain pretty well and carrying on each day. I am glad for you that your pain is not bad every day and you get a break from it. As far as removing lymph nodes that he is talking about I have read on here that sometimes they take extra ones anyway just to be on the safe side. I think the antibiotics will take care of your ulcer I had to take them a couple of times for mouth sores during treatment. I am glad you like your doctor and that he is such an advocate for you. Do you have any idea when they may start your treatment? Best wishes-Take Care-God Bless-Russ

ozymandible said:

Nothing new to report on my

Nothing new to report on my part.  Just wanted to jot a few things down.  

Took the Seeing Eye Kid on a tour of the places she'll have to take my husband to-though she probably won't drive but help him with his walker at the door, park, and drive car to door again to pick him up.

He is having a hard time.  One day on the way home from UCSF, a car almost clipped us.  It scared me so I let out a loud eek which scared him into having to take two nitroglycerine tabs. 

He has also been having incontinence issues in addition to edema.  He has shortness of breath and is on oxygen.  When me and the Seeing Eye Kid got home, he had a slight accident and I had to help him get cleaned up.

I have always been suspicious about the frightening array of pills he had to take after his heart attack last year.  They put that man on everything under the sun!  At one point, he was on 2 or three blood thinners!  He was on statins(those were a nightmare for me)even though he had no cholesterol issues.

Anyway, the poor guy is miserable so I looked up side effects of all his medications and get this-EVERY last one of them is showing incontinence and shortness of breath and some of them cause cardiac issues. At least one of them causes edema. Go figure.

He is on two drugs for blood pressure because he was a tad high when he saw his GP so GP gave him another BP drug.  He has been off the statins for almost a month-his decision.  He told me to take the extra BP drug out of the pill organizer so I did.

He has always nagged me to get a GP and have a cbeckup at least once a year.  I told him there is a reason why I don't. (I only go to get a flu shot or antibiotics if I have pneumonia or sinus infection or something)

I regularly visit specialists because my insurance allows me to.  None of this gatekeeping BS.  I have my ENT guy who monitors my mouth.  Now I have a cancer guy who is making decisions on my cancer treatment.  I also have an endocrinologist who monitors my hypothyroidism.  They are all specialists and very good at what they specialize in.

But whenever I go to the GP type doctor, they ALWAYS want to get involved in my thyroid treatment and start testing me and monkeying around with my dosage which ALWAYS makes me sick.  If I get sick enough, they can write all kinds of RX for THOSE symptoms.

The GP is not going to change your chemo or rads so why do they feel compelled to tweak on everything else?  The specialists are handling it just fine, thank you very much.

Anyway, I discussed it with my husband and told him to go over his meds with his cardiologist, oncologist and respiratory doctor. Maybe they can give him better meds that don't leave him gasping for air or peeing all over the place.  Maybe they can reduce or eliminate some of his meds.

I don't have much planned today.  It's Sunday so maybe I'll make meatloaf, MPG(mashed potatoes and gravy)and buttered baby carrots with dill for dinner.  The Boy made noise about moving stuff over to the  new place.  God bless him.  : ). He came over on Friday and we all teamed up on the yardwork again.  I am so blessed to have my kids.

Bye for now.  Nothing new except the meeting with the hospice\palliative doctor in a couple days.  We will probably be discussing pain management(a subject of exceedingly great interest to me nowadays, ha ha!)and the feeding tube maybe?

Later, you guys.  : )

Some updates going, appreciated. Sometimes I don't feel so great or get down a little but then I find someone in your shoes with an awful lot going on with herself and her husband. You certainly have a full plate right now. I have heard so many times of people feeling lousy or having other problems and once they get their meds evaluated and just take what they need or get meds changed they are much better. Wrong meds or being over-medicated cause problems for sure. I think you are wise on the specialists. When I was a young man a wiser older man told me if you want a good eye exam don't just go to a place that checks you for glasses or an optometrist go to an ophthalmologist who is a specialist in eye care. Take Care-God Bless-Russ