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If y'all see Rich roaming the halls
- Thread starter ETLS
- Start date
I managed half a meal through my feeding tube, then got my tube taped down to avoid any mishaps. I slept for quite a while. Took care of normal bodily functions when I woke up early this morning and took another half meal.
This morning I woke up feeling better than I have in the past two weeks. It felt good to take a full meal, and I took in an extra bottle of water for good measure. This winter hell has sucked my enjoying the sunshine with a cat or three around and I hate that. Maybe in a week or so I can soak up the sun, with the sweet sounds of purring breaking the silence. Since I have an air mattress, cats cannot come in to stay. That and how rambunctious they can be.
Yesterday's appointment was a bust. They are not in network and do not take my Medicare insurance. It didn't bother them in the least to snap h a large portion of cash to have me fill out paperwork, get a 360° x-ray or my mouth. They were supposed to remove my remaining teeth so that I could start my first round of radiation treatments. I felt like I was robbed. Money I could not afford to throw away for nothing in return, and once again the cruel hand of gov red tape has set my treatments back for maybe another two weeks. What started on December 10th, has gone to hell in a handbasket trying to get treatments. Meanwhile, the tumor has completely engulfed my mouth, the roof of my mouth has a "stingray" flap of tumor that hangs half an inch thick, goes from side to side, and makes swallowing very difficult.
I have my pillow in a plastic bag, with a bath towel wrapped around it, with several fresh ones at the ready on my bed. When sleeping, I'm slobbering the consistency of boiled okra and when I'm sufficiently covered and awakened, I have to wipe my face clean, and change the towel.
I have three appointments today, same building, so let's see how bad yesterday's bust of an appointment will be.
Thank you all for the emotional support, being alone here takes its toll but you all give my world a brilliant ray of sunshine. It truly means a lot and I am grateful for your words of encouragement.
This morning I woke up feeling better than I have in the past two weeks. It felt good to take a full meal, and I took in an extra bottle of water for good measure. This winter hell has sucked my enjoying the sunshine with a cat or three around and I hate that. Maybe in a week or so I can soak up the sun, with the sweet sounds of purring breaking the silence. Since I have an air mattress, cats cannot come in to stay. That and how rambunctious they can be.
Yesterday's appointment was a bust. They are not in network and do not take my Medicare insurance. It didn't bother them in the least to snap h a large portion of cash to have me fill out paperwork, get a 360° x-ray or my mouth. They were supposed to remove my remaining teeth so that I could start my first round of radiation treatments. I felt like I was robbed. Money I could not afford to throw away for nothing in return, and once again the cruel hand of gov red tape has set my treatments back for maybe another two weeks. What started on December 10th, has gone to hell in a handbasket trying to get treatments. Meanwhile, the tumor has completely engulfed my mouth, the roof of my mouth has a "stingray" flap of tumor that hangs half an inch thick, goes from side to side, and makes swallowing very difficult.
I have my pillow in a plastic bag, with a bath towel wrapped around it, with several fresh ones at the ready on my bed. When sleeping, I'm slobbering the consistency of boiled okra and when I'm sufficiently covered and awakened, I have to wipe my face clean, and change the towel.
I have three appointments today, same building, so let's see how bad yesterday's bust of an appointment will be.
Thank you all for the emotional support, being alone here takes its toll but you all give my world a brilliant ray of sunshine. It truly means a lot and I am grateful for your words of encouragement.
Rob,
It was great to hear from you this morning. I absolutely hate the circumstances of your healthcare. Is there any sort of patient advocate that could step in and give you a hand? Are you active in a church? — any help there? Are you a veteran? Any help there? Community social services?
Keep posting, as you are able. We’ll keep praying and hoping things turn around for you.
Bob
It was great to hear from you this morning. I absolutely hate the circumstances of your healthcare. Is there any sort of patient advocate that could step in and give you a hand? Are you active in a church? — any help there? Are you a veteran? Any help there? Community social services?
Keep posting, as you are able. We’ll keep praying and hoping things turn around for you.
Bob
In sickness or health this has been my prayer, for myself and in the Spirit, for others, all of us. Elvis was in the moment, one can hear it through his voice. God speed my friend. Good to hear from you. F cancer.
I read every word. I went through the gamut of emotions. Happy you're waking up feeling well. Laughed thinking about your kitty friends (I have 3, I get it). Then utter anger and frustration at the morass that is our "extract any/all assets" health care racket.
Here in Kentucky sending whatever positive, cosmic love I can muster. Know that many here are praying and hoping.
Quadman2
Lunatic Member
It is I/we who in turn who thank you for being the epitome of strength and ruggedness that you have managed to display with the bodly struggles you have to contend with on continuing basis. Until one experiences such as the med state that you are in, it's all second hand for them. And to see the determination to do the best you can, still holding to a positive nature...you are truly amazing!
Having worked as an orderly for a couple of Summers in a semi-active/palliative care hospital, I know only too well the strenuous and demanding toll that the med procedures that you face on a daily/hourly basis. Most others could not persevered as have you and to the extent you have...yet keeping an ongoing determination to cope as best you can.
At some time in the future, some of us will also confront what you are dealing with, and you've shown us how to deal with it!
Keep in mind some of my "past alluding to the help that's out there", and all you have to do is to reach out. You will know when that connection is made. Trust me on this! There again, the many who have had your back will also support the much needed assurance of... and keeping in mind that He has your back.
Your AK bud who cares for you and is with you in spirit if not there physically.
Q
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I woke up around five am today, felt well rested, no feverish vibe, and was wide awake. I was craving a cream soda so I got one, and a straw and settled back upright in bed.
I call the cancerous flap that covers my upper palate, "stingray". That's about what it looks like.
While enjoying that delicious soda, stingray broke part of its right wing.
I call the cancerous flap that covers my upper palate, "stingray". That's about what it looks like.
While enjoying that delicious soda, stingray broke part of its right wing.
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Riding along next to you and hoping the new problems can find a solution. I realize how much of a burden the insurance side can become. It seems like each new year they raise the deductible. Luckily I have Federal Blue Cross since I only have Part A with Medicare. All our friends with Medicare Advantage plans have nothing but trouble. As always my prayers and mojo are aimed right at you. I also sent a vibe to send Stingray back to Sea World. 
I started this journey at a hefty 277 pounds. On the 13th of this month, when I was admitted with the high fever for ten days, which they sent me home with, it took several days of waking up long enough to handle normal bodily functions, I was at 199.10 or almost 200 pounds. Yesterday I was at 184 and change. I've had full meals yesterday, had a full breakfast but couldn't get lunch in due to bus picking me up for appointments, which the nimrod made some stupid errors making me late.
So here ya go.
So here ya go.
While I'd not go through the hell you're going through to get it, that BP is desirable. Mine just won't budge from 139/75 or so.
What I would give for BP that low, mine usually 142/99 and I take 40mg lisinopril and 30mg propranolol daily. 02 is 92%
Hang in there Rob, Deb and I have been looking into other ways to get better care for you
Hang in there Rob, Deb and I have been looking into other ways to get better care for you
I cannot begin to thank you enough for doing anything to help ease the burdens this scourge forces upon us. I've found some resources that my Medicare insurance doesn't cover, especially in the dental department.
I have to have all of my remaining teeth removed before starting radiation, plus the 1980 motorcycle I survived (broken jaw in two places) has both bone and gum issues that must be repaired. It would be an understatement to say I almost logged in my britches when presented with the proposed out of pocket price.
I spent the majority of yesterday evening searching every known resource I've found, but I believe I have found a suitable compromise if I can get my x-rays to this new clinic.
Thankfully there are compassionate caregivers who dedicate their practices to those who need care but don't have the Warren Buffet wallet. It is an emotional Rollercoaster to hit setbacks, but oh so sweet when an alternative is found.
I woke up around three am this morning, got my two cartons of liquid nutrition and bottle of water down. It sucks being this cold, I would love to be wrapped up in a patio chair with a cat or three in my lap.
That is the best medicine.
Another day is here and cancer, you do not own me, my emotions, or my soul. Today round one is over, you have had the upper hand as I was forced to learn about you. You've weakened me physically, but you will never weaken me in my soul.
I know you now. I am gracefully and peacefully accepting this battle to the end.
Your end.
You are battling a warrior spirit. There is no quit in me. Now that I know what you are, you will find I will beat the ever-loving brakes off you. I own you now. Round two has begun, and I'm so ready to take this battle to YOU and you will be defeated.
It's almost four am, I am wide awake, I am ready.
Feel like temp -20 here. Kitchen is 63 and living room 57. Cold here even with a cat loyally by my side. Tiggercat is a good girl. Hard to believe the difference from when I took her from an abusive home. You couldn't even pet her without her lashing out with tooth and claws
We all have our battles Rob. My life expectancy not good, there is no fix for me. I hope you send that cancer into history and live a long life. Just took my BP and there you go
Please don't think this post I am making is about me. I am just staring at my own mortality. The better choices I perhaps could have made. No one lives forever and the reaper beckons. He still gets the middle finger from me. Talked to my son Jake last night man to man. Wish I had another 20-30 years to see the man he is and will be. A good son, my legacy and the only right thing I have done in my life. I can't even volunteer anymore because just 2 shovel falls of snow send me to the ground gasping for air. Wish you and I could hang out with the purrs and just laugh
Love you man, get well
PS I know date shows wrong on weather thingy, never could figure it out but it is accurate. No one at our age should be living in a cold house. We only have a pellet stove to heat all 1200sqft. Can't use wood stove because I can't handle wood anymore. I miss my strength, I miss looking forward to the day
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A warrior spirit! God bless you man. F cancer.
Warrior spirit, indeed.
Another here to extend the middle to that big ol' bytch, Miss C.
Another here to extend the middle to that big ol' bytch, Miss C.
I am with you in spirit. Your battles are mine, I'm armed with silent prayers on a daily basis, without fail. It sucks to hear your struggles but you're 100% correct, we have but one turn with no do-overs.
We cannot predict the future, but we can plan for it. Look how quickly those plans can be kicked to the curb with a new set of rules.
Love you guys my brother. We're riding this all the way to the end.
There is no other way. We draw strength and courage from each other, thank you Sir. God be with you. F cancer.