Thursday
*sigh*
Not much happening here in this
cancer-rabbit-hole we fell into.
I like it like that.
My husband still can't sip water... Very well anyway.
Food? Forget about it. Can you imagine not eating even ONE bite of food for FOUR whole months? I can't.
(Food is my Friend)
He says water goes down but he's not sure if it stays there or if it's simply spit. So... I gave him a small amount of orange Gatorade to drink.
It went down and mostly 50% stayed down. Being orange-colored helped to sort out what it was he was spitting out.
He says he still feels something back there gagging him if/when he does swallow. Hmmm.
Is it a tumor?
Is it dead cancer?
Is it scar tissue?
Who knows, but he refuses to go see the Ear Nose and Throat doctor and I can see his point... to a point. All of my nudging and nagging get me no where.
(I've even threatened to use the Company Credit Card and go on an extravagant Shopping Spree again... Still nope.)
He says "Why test what you won't treat."
He just simply does not LOOK like a man with cancer any longer.
The dull grey coloring is gone. He has those pretty flushed cheeks and ruddy complexion back that made me fall in love with him.
He is no longer losing weight. I feed him every 3 hours 6 times a day. 6 cans of Isosourse canned liquid a day via his feeding tube.
He no longer coughs up blood.
He no longer has that raspy "hot potato" voice.
He is no longer so fatigued he can't move one step in front of another.
He has even been going to the office 2-3 hours a day.
You tell me.
Does that all sound like a sick and dying man?
No symptoms~~ no cancer, right?
So, we wait.
The PET Scan is scheduled for the end of November. That will tell the true story.
The truth, The whole truth, and nothing but the truth.
It's still too early to do the PET Scan now as the radiation is still inside his body and he would light up like a nuclear reactor.
So... As I said, we wait.
Waiting has never been my strongpoint but we are learning to cope.
Life goes on and time waits for no man... or woman.
(Where did I put that Credit Card anyway?)
PS. I noted that Steve Jobs passed away.
RIP Steve Jobs.
He had the same rare Neuroendocrine cancer my husband has....
I feel a Scarlett O'Hara moment coming on again......
Showing posts with label back of the throat cancer. Show all posts
Showing posts with label back of the throat cancer. Show all posts
Thursday, October 6, 2011
Thursday, September 29, 2011
Today, I Am Scarlett O'Hara Again...
Today is the day.
We have been walking around this house these last few days as nervous as two long-tailed cats in a room full of rocking chairs.
So scared.
So worried. Praying and asking God and the doctors to give good news.
All of you (my little heartbeats) have been so wonderful and diligent.
So kind and supportive. We are no longer strangers. How can we be?
You were here with us thru this fight.
Pushing. Reading my words.
Praying.
I love you.
We both do.
We arrive at the oncologists office 5 minutes ahead of time. As I exit the car and slam the door behind me, I tell my husband...
"When we return to this car, we will be two completely different people. Our lives are about to change directions. Remember that as we climb back in to go to go on our way."
His look says it all. Kind of a "Oh Crap" look.
We enter the building arm in arm much as we did as we walked down the aisle of our cathedral after saying "I Do" at our wedding.
Both of us have been waffling at what the results of the scan will be.
One second...
It's going to be All Clear.
The very next half second...
It's going to be devastating news.
We check in and sit in the waiting room.
Time clicks by.
My heart beat quickens each time a new patient is called in. We sit and memories of radiation and chemo slip thru my mind. OUT! Those days were so grim and cold. Today is for positive not memories of painful treatments.
We are finally called.
We pass the oncologist in the hall.
He hugs us both in a warm bear-hug.
Wait.
Is that a good sign or a bad sign?
We are put into a holding room to wait some more. We try to analyze everything.
"Did he hug us because he knows we need to go choose funeral attire or did he hug us because he is about to give us happy news?" My husband asks me.
"Good grief, stop that. He hugged us because he ...."
My mind goes off that cliff.
The door opens and the doctors smiling face enters.
We both move the very edge of our seats.
He begins to ask random, mundane health questions.
"Get to the point. The Bottom line! Enough with the chit chat." I want to get right in his face and yell.
We've been waiting 6 days for this.
Finally, his words.
I melt.
All looks Clear.
You are in Partial Remission.
Come back in a month for another CT Scan, a Flex Scope, and a PET Scan in 2 months and we will know more. We can then see if it has spread or if it is all dead. Most of the tumors are gone but some are there and I hope inactive."
Enough said!
We Gone.
In my mind, we are out the door and escaping this place like a 2nd grader when she hears the bell ring for recess. RUN! School's out!
Freedom! Escape.
Back to the safety of our car and away from this place!
Not so fast, lady.
What the heck is "Partial Remission?
Isn't that somewhat like saying you are Kind of Pregnant?
Just like Scarlett O'Hara would do, I pick up my handbag and practically skip out the door. Fiddle dee dee.
"We'll think about that tomorrow."
We have been walking around this house these last few days as nervous as two long-tailed cats in a room full of rocking chairs.
So scared.
So worried. Praying and asking God and the doctors to give good news.
All of you (my little heartbeats) have been so wonderful and diligent.
So kind and supportive. We are no longer strangers. How can we be?
You were here with us thru this fight.
Pushing. Reading my words.
Praying.
I love you.
We both do.
We arrive at the oncologists office 5 minutes ahead of time. As I exit the car and slam the door behind me, I tell my husband...
"When we return to this car, we will be two completely different people. Our lives are about to change directions. Remember that as we climb back in to go to go on our way."
His look says it all. Kind of a "Oh Crap" look.
We enter the building arm in arm much as we did as we walked down the aisle of our cathedral after saying "I Do" at our wedding.
Both of us have been waffling at what the results of the scan will be.
One second...
It's going to be All Clear.
The very next half second...
It's going to be devastating news.
We check in and sit in the waiting room.
Time clicks by.
My heart beat quickens each time a new patient is called in. We sit and memories of radiation and chemo slip thru my mind. OUT! Those days were so grim and cold. Today is for positive not memories of painful treatments.
We are finally called.
We pass the oncologist in the hall.
He hugs us both in a warm bear-hug.
Wait.
Is that a good sign or a bad sign?
We are put into a holding room to wait some more. We try to analyze everything.
"Did he hug us because he knows we need to go choose funeral attire or did he hug us because he is about to give us happy news?" My husband asks me.
"Good grief, stop that. He hugged us because he ...."
My mind goes off that cliff.
The door opens and the doctors smiling face enters.
We both move the very edge of our seats.
He begins to ask random, mundane health questions.
"Get to the point. The Bottom line! Enough with the chit chat." I want to get right in his face and yell.
We've been waiting 6 days for this.
Finally, his words.
I melt.
All looks Clear.
You are in Partial Remission.
Come back in a month for another CT Scan, a Flex Scope, and a PET Scan in 2 months and we will know more. We can then see if it has spread or if it is all dead. Most of the tumors are gone but some are there and I hope inactive."
Enough said!
We Gone.
In my mind, we are out the door and escaping this place like a 2nd grader when she hears the bell ring for recess. RUN! School's out!
Freedom! Escape.
Back to the safety of our car and away from this place!
Not so fast, lady.
What the heck is "Partial Remission?
Isn't that somewhat like saying you are Kind of Pregnant?
Just like Scarlett O'Hara would do, I pick up my handbag and practically skip out the door. Fiddle dee dee.
"We'll think about that tomorrow."
Monday, September 26, 2011
The Countdown
Monday Evening
Friday it began.
The countdown to Thursday.
To me, it's criminal to make a person wait 6 days to find out the results of the CT Scan taken on Friday.
This weekend was brutal. We did everything to keep our minds off it.
Gin Rummy.
A race to see who could complete the USA Today Crossword first. Watched old movies curled up together on the couch.
It didn't help at all. It's always there.
Haunting your mind.
Taking your breath away. One minute convinced the outcome will be perfect. Then in the next instant, dashed to depths of despair that it won't be.
Our appointment on Thursday is at 10:00 and I may not have any eyelashes left by then from stress and worry.
You see, this test will show if the cancer is gone or not. Did the treatments work? All of the pain and trauma? Will it be good news?
So, basically, we will get a
"You will live" or a "You will not live"
verdict.
Sometimes I can't even wrap my mind around that.
To look at dying so close and personal?
Someone asked me in the comments about Henry's anti-nausea medicine. Is the dose strong enough?
It's not that sadly.
It's when he tries to swallow. Tries to brush his teeth, sip water.
He says he gags.
The tiniest sip of water goes down then comes right back up.
(He hasn't drank water or eaten by mouth in over 3 months)
He says he feels something back there and it chokes him.
(I cringe just writing these words down)
My hope is that it's dead cancer stuck back there. Cancer that was killed by the radiation. Cancer just stuck there doing nothing but being dead.
Please be DEAD! Please don't show up on a CT Scan as alive!
The doctor's words are our future.
I wonder if I will whoop in glee or melt into a puddle of crying blubber on the floor of the office.
If this is this hard for ME... Imagine how it must feel to be Henry?
I can't even.
So... We wait.
We continue to play cards, do the crossword and watch movies with Thursday, 10:00 on our minds.....
Friday it began.
The countdown to Thursday.
To me, it's criminal to make a person wait 6 days to find out the results of the CT Scan taken on Friday.
This weekend was brutal. We did everything to keep our minds off it.
Gin Rummy.
A race to see who could complete the USA Today Crossword first. Watched old movies curled up together on the couch.
It didn't help at all. It's always there.
Haunting your mind.
Taking your breath away. One minute convinced the outcome will be perfect. Then in the next instant, dashed to depths of despair that it won't be.
Our appointment on Thursday is at 10:00 and I may not have any eyelashes left by then from stress and worry.
You see, this test will show if the cancer is gone or not. Did the treatments work? All of the pain and trauma? Will it be good news?
So, basically, we will get a
"You will live" or a "You will not live"
verdict.
Sometimes I can't even wrap my mind around that.
To look at dying so close and personal?
Someone asked me in the comments about Henry's anti-nausea medicine. Is the dose strong enough?
It's not that sadly.
It's when he tries to swallow. Tries to brush his teeth, sip water.
He says he gags.
The tiniest sip of water goes down then comes right back up.
(He hasn't drank water or eaten by mouth in over 3 months)
He says he feels something back there and it chokes him.
(I cringe just writing these words down)
My hope is that it's dead cancer stuck back there. Cancer that was killed by the radiation. Cancer just stuck there doing nothing but being dead.
Please be DEAD! Please don't show up on a CT Scan as alive!
The doctor's words are our future.
I wonder if I will whoop in glee or melt into a puddle of crying blubber on the floor of the office.
If this is this hard for ME... Imagine how it must feel to be Henry?
I can't even.
So... We wait.
We continue to play cards, do the crossword and watch movies with Thursday, 10:00 on our minds.....
Sunday, September 4, 2011
Nothing Left Today
Sunday
Today, I am writing this because I have a break. Two minutes.
I have had so many notes and letters and calls wondering "Why no blog post?"
"Is everything ok?"
No. Not really. It's not.
My husband is better one day and then bottoms out the next. Two trips to the ER. IV fluids every Thursday and blood work.
Vomiting.
Diarrhea one day
Constipation the next.
Did I say vomiting?
Anti-nausea meds and Murilax.
Which is it today? Vomiting.
Blood results call for blood transfusions.Hemoglobin is as low as it gets.
6-8 hours in the Emergency Room.
New blood. Thank You to whoever donated this blood. Who are you?
My Mother in law is dying.
My heart is breaking.
Will I ever stop crying?
I can't go next door to see her. I have nothing left. Zero.
I feel so guilty. My mother in law is like the mom I never had to me and I can't see her like this. I can't spare one second of heartache to give her?
I feel so numb and empty today. Hopeless.
My son just called. His girlfriend left him. He told me he wants to starve himself to death.
I just hung up on him. My heart is wrung out to the last drop.
Tomorrow will be better, right?
Today, I am writing this because I have a break. Two minutes.
I have had so many notes and letters and calls wondering "Why no blog post?"
"Is everything ok?"
No. Not really. It's not.
My husband is better one day and then bottoms out the next. Two trips to the ER. IV fluids every Thursday and blood work.
Vomiting.
Diarrhea one day
Constipation the next.
Did I say vomiting?
Anti-nausea meds and Murilax.
Which is it today? Vomiting.
Blood results call for blood transfusions.Hemoglobin is as low as it gets.
6-8 hours in the Emergency Room.
New blood. Thank You to whoever donated this blood. Who are you?
My Mother in law is dying.
My heart is breaking.
Will I ever stop crying?
I can't go next door to see her. I have nothing left. Zero.
I feel so guilty. My mother in law is like the mom I never had to me and I can't see her like this. I can't spare one second of heartache to give her?
I feel so numb and empty today. Hopeless.
My son just called. His girlfriend left him. He told me he wants to starve himself to death.
I just hung up on him. My heart is wrung out to the last drop.
Tomorrow will be better, right?
Monday, August 22, 2011
Graduation Day
Monday
7:00 a.m.
Today is the day!
All weekend we have both been repeating "One More Day" with giant smiles. (Well, my face was a smile, my husbands more of a fake sad grin, to keep me happy)
One more treatment today and then this torture ends.
No more Mask.
No more radiation.
No more chemo.
One more day. Today. It ends....
My husband hasn't been sleeping in bed.
He has to sleep sitting straight up these last few days since the mucus is so thick in his throat. He has no saliva anymore so this thick stringy stuff just collects like rope in the back of his throat and it chokes him.
Every 3 minutes he must spit it out and when I say it's like rope, that's no exaggeration. It's thick, stringy and will choke a horse.
If he slips and lays too far down, I can hear him choke and each breath is like dragging a car down the drive with no tires. I wake up with a start when I hear him gasping and think
"Breathe, breathe, exhale....wait.......
Inhale...Wait.... exhale..... Inhale.... Wait...Breathe, dammit breathe!"
I can hear that stuff caught there and air has no chance to penetrate it.
Gross? Youbetcha. I can stand vomit or blood... Mucus and spit? Thick and slimy?
Not so much.
I wake up and stagger to the living room in the still dark pre-dawn of morning and find a very pale, weak, sad looking husband sitting upright in his favorite lounger. Wide awake.
I remind him... "One More Treatment" with a shaky grin.
No?
He shakes his head. His voice is completely gone now.
He looks like something the dog drug in from the back yard.
How can he possible put on that dreaded mask, be clamped to the table flat on his back and lie there without moving for 40 minutes thru one last radiation treatment and not choke to death.
Does ONE more treatment matter in the grand scheme of things?
Probably not but I gently remind him that we can and will get thru this last one. One more.
10:00 a.m.
We leave and arrive at the clinic.
I am so fearful they will tack on some surprise additional treatments but they don't.
Our parole begins today.
They call his name. I sit and wait. The time seems to be dragging. What is going on in there? Is he choking to death on that crap?
I hear a siren wailing in the background. Is that coming here or to the hospital right next door?
I feel as tho I took one giant breath as I entered this building and am afraid to take another. Time is crawling. I know they give him a safety buzzer if he is in trouble but geez, this is a man that never ever complains.
Tick tock... One minute is an eternity.
Finally, I see him turn the corner and his sad little face tells me he is done.
It's over.
No more treatments.
My eyes well up with tears at the thought. I told him I would drag him thru this. Neither of us is pretty but we did it!
Now what happens?
The other patients all call it "Getting put out to pasture"
They send you home and you wait. Wait to get poked and prodded and then scanned for a recurrence.
The chemo stays in your body several days but radiation takes about a month so to scan now would all show up as red hot inflammation from the burning and searing of the radiation.
As I am writing this, our phone rings several times. It seems the word is already out. Our initial doctor's office calls to schedule an appointment for a flex-scope in 4 weeks. The radiation clinic calls for a follow up in two weeks just so see how he is progressing. The chemo clinic calls to schedule an appointment for an infusion of IV fluids on Thursday.
We may be in the pasture now but it's not going to be all rosy.
The feeding tube must remain in place.
If anyone reading this is or will be going thru this or helping a loved one, I plead with you... Implore you and encourage you to get the G-Tube and get it in place before treatment begins. To do it after, you will not have the energy to do so.
It has saved my husbands life.
He has lost 40 pounds but would have probably lost double that without it.
Also, it helps to get pills and water in via the tube. My husband stopped drinking or even sipping water a week ago. I am told he will have to go thru therapy to re-learn how to eat and drink. His muscles have probably locked up. (I know that feeling. My heart locked up about 2 months ago)
So, for now we are out to pasture and I am glad to be there. We have a month of innocent oblivion. We don't know a thing and for now, I'm happy about that.
Recurrence is now our enemy.
We hear so many people that have treatment then say after the first scan, "I beat it. I'm cancer Free!"
Not so fast...
Since entering this nightmare and learning more than I ever wanted to know about cancer, I have discovered that you are only as good as your last scan.
Recurrence.
We won this battle. We made it thru the treatment.
Now we must win the war.
Recurrence, keep your smelly ass outta here!
7:00 a.m.
Today is the day!
All weekend we have both been repeating "One More Day" with giant smiles. (Well, my face was a smile, my husbands more of a fake sad grin, to keep me happy)
One more treatment today and then this torture ends.
No more Mask.
No more radiation.
No more chemo.
One more day. Today. It ends....
My husband hasn't been sleeping in bed.
He has to sleep sitting straight up these last few days since the mucus is so thick in his throat. He has no saliva anymore so this thick stringy stuff just collects like rope in the back of his throat and it chokes him.
Every 3 minutes he must spit it out and when I say it's like rope, that's no exaggeration. It's thick, stringy and will choke a horse.
If he slips and lays too far down, I can hear him choke and each breath is like dragging a car down the drive with no tires. I wake up with a start when I hear him gasping and think
"Breathe, breathe, exhale....wait.......
Inhale...Wait.... exhale..... Inhale.... Wait...Breathe, dammit breathe!"
I can hear that stuff caught there and air has no chance to penetrate it.
Gross? Youbetcha. I can stand vomit or blood... Mucus and spit? Thick and slimy?
Not so much.
I wake up and stagger to the living room in the still dark pre-dawn of morning and find a very pale, weak, sad looking husband sitting upright in his favorite lounger. Wide awake.
I remind him... "One More Treatment" with a shaky grin.
No?
He shakes his head. His voice is completely gone now.
He looks like something the dog drug in from the back yard.
How can he possible put on that dreaded mask, be clamped to the table flat on his back and lie there without moving for 40 minutes thru one last radiation treatment and not choke to death.
Does ONE more treatment matter in the grand scheme of things?
Probably not but I gently remind him that we can and will get thru this last one. One more.
10:00 a.m.
We leave and arrive at the clinic.
I am so fearful they will tack on some surprise additional treatments but they don't.
Our parole begins today.
They call his name. I sit and wait. The time seems to be dragging. What is going on in there? Is he choking to death on that crap?
I hear a siren wailing in the background. Is that coming here or to the hospital right next door?
I feel as tho I took one giant breath as I entered this building and am afraid to take another. Time is crawling. I know they give him a safety buzzer if he is in trouble but geez, this is a man that never ever complains.
Tick tock... One minute is an eternity.
Finally, I see him turn the corner and his sad little face tells me he is done.
It's over.
No more treatments.
My eyes well up with tears at the thought. I told him I would drag him thru this. Neither of us is pretty but we did it!
Now what happens?
The other patients all call it "Getting put out to pasture"
They send you home and you wait. Wait to get poked and prodded and then scanned for a recurrence.
The chemo stays in your body several days but radiation takes about a month so to scan now would all show up as red hot inflammation from the burning and searing of the radiation.
As I am writing this, our phone rings several times. It seems the word is already out. Our initial doctor's office calls to schedule an appointment for a flex-scope in 4 weeks. The radiation clinic calls for a follow up in two weeks just so see how he is progressing. The chemo clinic calls to schedule an appointment for an infusion of IV fluids on Thursday.
We may be in the pasture now but it's not going to be all rosy.
The feeding tube must remain in place.
If anyone reading this is or will be going thru this or helping a loved one, I plead with you... Implore you and encourage you to get the G-Tube and get it in place before treatment begins. To do it after, you will not have the energy to do so.
It has saved my husbands life.
He has lost 40 pounds but would have probably lost double that without it.
Also, it helps to get pills and water in via the tube. My husband stopped drinking or even sipping water a week ago. I am told he will have to go thru therapy to re-learn how to eat and drink. His muscles have probably locked up. (I know that feeling. My heart locked up about 2 months ago)
So, for now we are out to pasture and I am glad to be there. We have a month of innocent oblivion. We don't know a thing and for now, I'm happy about that.
Recurrence is now our enemy.
We hear so many people that have treatment then say after the first scan, "I beat it. I'm cancer Free!"
Not so fast...
Since entering this nightmare and learning more than I ever wanted to know about cancer, I have discovered that you are only as good as your last scan.
Recurrence.
We won this battle. We made it thru the treatment.
Now we must win the war.
Recurrence, keep your smelly ass outta here!
Tuesday, August 9, 2011
Treatment is NOT for Sissys
Tuesday
10:00 a.m.
Today we go to the Radiation clinic as usual.
My husband's throat on the inside burns like fire. On the outside, it looks like he's been in a fire. The fires of Hell.
I would love to show you a picture, but after snapping a very graphic photo of it with my iPhone, I realize that it's so horribly ugly and mean looking that others that may read this blog for advice or searching for answers for a loved one going through this exact treatment might scare them so badly that they will not take the treatments at all.
It's bad, really really bad.
The skin has gotten so dry and cracked and seeping blood and that is on the outside. Weeping. I can't even imagine what it looks like or feels like from the inside.
(I will never complain of a sore throat again in my life)
Sipping water has gotten to be a real challenge and so much pain that I see him wince as he swallows. One sip. He tries to hide it from me but I see it and have to leave the room.
He still has his pride.
I continue to have great hope here but today we were told not to take the radiation treatments for 3 days to allow this area to heal. The doctor told us today that the skin will get worse. Much worse.
It's like someone laid out in the sun with only their neck exposed for 10 solid years with no sunscreen. We are given so many prescriptions for pain: Mary's Magic Mouthwash, Lidocaine Elixir, Esophagitis Elixir, Lortab pills, Lortab Elixir. All are liquids to go into the G-tube or pills to be crushed.
The skin is purple, broken, dry and seeping.
We are sent home.
Counting the days until this is over and these last 9 treatments may either make him or break him.
Meet The Mask~
This is the Dreaded Mask my husband hates so much. The mask is necessary to get exact pinpoint results for the beams to hit their targets.
They form-fit the mask very close to your face then place it on you. You can not move or blink your eyes. Then, they clamp you and the mask to the table, chain your arms to your sides and treatment begins. No movement.
35 - 40 minutes. 17 different angles.
My husband is very claustrophobic and despises this damn thing.
I would too.
9 more radiation treatments and two more rounds of chemo then we play the waiting game...
Let's not go there today. Recurrence and surgery options have become like swear words to me. I refuse to have them in my house or near my brain.
Cutting off your entire bottom jaw, tongue, voice box and half your neck? Nuh-uh. Not thinking about that today.
There is a man we know that we see every day at the radiation clinic.
He has brain cancer. It's odd how he found out that he had it.
He was in a restaurant and had this overwhelming need to flee.
Some super-anxiety attack? No.
It happened several more times in the week that followed. He would be out or even at home sitting in a chair and this horrible anxiousness and fear to run would completely take over and he would literally run away.
Then the seizures came so he went to see his family doctor. They did the scans, PET, CAT and MRI scans and found he had a tiny pea sized tumor on his brain.
Why the fears and anxiousness? The tumor was on the part of the brain that signals "Flight or Fight." Adrenaline would go into overdrive and he would feel as though he was in a burning building. His urge to flee would provoke such fear. Complete fear.
They removed the tumor but told him his chances of survival are 0%.
This isn't just some random man that we know but a friend. My husband has known him since grade school.
We have the next few days to heal and wait. Then those last nine treatments and two chemo rounds face us.
After that, the waiting begins....
10:00 a.m.
Today we go to the Radiation clinic as usual.
My husband's throat on the inside burns like fire. On the outside, it looks like he's been in a fire. The fires of Hell.
I would love to show you a picture, but after snapping a very graphic photo of it with my iPhone, I realize that it's so horribly ugly and mean looking that others that may read this blog for advice or searching for answers for a loved one going through this exact treatment might scare them so badly that they will not take the treatments at all.
It's bad, really really bad.
The skin has gotten so dry and cracked and seeping blood and that is on the outside. Weeping. I can't even imagine what it looks like or feels like from the inside.
(I will never complain of a sore throat again in my life)
Sipping water has gotten to be a real challenge and so much pain that I see him wince as he swallows. One sip. He tries to hide it from me but I see it and have to leave the room.
He still has his pride.
I continue to have great hope here but today we were told not to take the radiation treatments for 3 days to allow this area to heal. The doctor told us today that the skin will get worse. Much worse.
It's like someone laid out in the sun with only their neck exposed for 10 solid years with no sunscreen. We are given so many prescriptions for pain: Mary's Magic Mouthwash, Lidocaine Elixir, Esophagitis Elixir, Lortab pills, Lortab Elixir. All are liquids to go into the G-tube or pills to be crushed.
The skin is purple, broken, dry and seeping.
We are sent home.
Counting the days until this is over and these last 9 treatments may either make him or break him.
Meet The Mask~
They form-fit the mask very close to your face then place it on you. You can not move or blink your eyes. Then, they clamp you and the mask to the table, chain your arms to your sides and treatment begins. No movement.
35 - 40 minutes. 17 different angles.
My husband is very claustrophobic and despises this damn thing.
I would too.
9 more radiation treatments and two more rounds of chemo then we play the waiting game...
Let's not go there today. Recurrence and surgery options have become like swear words to me. I refuse to have them in my house or near my brain.
Cutting off your entire bottom jaw, tongue, voice box and half your neck? Nuh-uh. Not thinking about that today.
There is a man we know that we see every day at the radiation clinic.
He has brain cancer. It's odd how he found out that he had it.
He was in a restaurant and had this overwhelming need to flee.
Some super-anxiety attack? No.
It happened several more times in the week that followed. He would be out or even at home sitting in a chair and this horrible anxiousness and fear to run would completely take over and he would literally run away.
Then the seizures came so he went to see his family doctor. They did the scans, PET, CAT and MRI scans and found he had a tiny pea sized tumor on his brain.
Why the fears and anxiousness? The tumor was on the part of the brain that signals "Flight or Fight." Adrenaline would go into overdrive and he would feel as though he was in a burning building. His urge to flee would provoke such fear. Complete fear.
They removed the tumor but told him his chances of survival are 0%.
This isn't just some random man that we know but a friend. My husband has known him since grade school.
We have the next few days to heal and wait. Then those last nine treatments and two chemo rounds face us.
After that, the waiting begins....
Thursday, August 4, 2011
Epic Fail
Thursday
9:30 a.m.
You know how I now feel about Thursdays. Total torture all wrapped up into a 10 hour day.
Blood Lab.
Radiation.
Chemo for 6 1/2 hours.
Today began as the last three chemo/Thursdays began. Up and feed "Franklin" 15 mg. Valium in the feeding tube at 7:30 to be good and onboard for the dreaded mask.
Apply the Lidocane at 8:30 to numb the port for the IV.
Be at the blood lab by 9:30.
Walk to the radiation clinic for 45 minutes of red-hot skin-shredding beams of radiation then back to the infusion clinic for chemo. (How is it I now know what an "Infusion Clinic" is anyway?)
61/2 hours of chemo then drag my poor man home and put him to bed and hope he doesn't hurl.
Today was an Epic Fail from the start.
I feed "Franklin" and add the Valium.
Out the door and I drive to the Blood Lab. We wait.
I love the Hurry up and wait process. It's much like a busy airport, huh?
They call him in and the phlebotomist is new. She takes blood via the numbed port but then takes the IV out! Grrr. It should remain there for the Chemo drug so not to be stuck twice.
Blood taken and down the elevator to rush to the Radiation Clinic.
Guess What? It's broken AGAIN! Did you hear that silent Yippeeee! From my husband. We both breathe a bit of a sigh of relief. I know... It's not doing any good if the treatment isn't administered but I think a radiation-break is in order. The skin around the neck and throat are almost purple and peeling, swollen this morning so yay, Yippeeee!
We head to the Chemo building for the Cisplatin. Fun.
We get there and of course, wait.
This time they tell us we are waiting on lab reports.
We are ushered into a room to speak to a Nurse Practitioner. You guessed it. The blood values were all wrong. Low platelets, low white and red blood counts. Bad BUN and Creatinine. Am I so wrong to be happy to be a FAIL???
It's like we got a hall pass for the day. Freedom!
I am going to tell you of a fail of a different kind today.
Last night I had a 2 year old melt down. My youngest grand daughter and I have much in common, it seems. When she is mad or frustrated or doesn't get her way, what does she do? She rears herself back, her face turns red and she melts it down like a pro. She's not quite two years old.
Last night I became Tenley in the most childish way. Let me tell you this is like living in a pressure cooker
( Insert lame excuse right here)
Our lives have been turned upside down and inside out and rolled over with a 12 ton bus and 15 Mack Trucks.
It happens.
It completely got ahold of me last night and I lost it. Lost it right in the middle of the kitchen. I felt as tho I couldn't go on for another minute without exploding so I did. I did it right but did it wrong.
I raged inside and then for 3.2 seconds I had the most delicious wonderful feeling as I took my MacBook Pro and dashed it to the ground and watched it as it broke apart in to a hundred electronic pieces on the ceramic floor.
As I said, for 3.2 seconds it felt so right. It felt so medicinal. So Deliciously evil.
When the anger and rage and horror of what I had just done wore off.... I wasn't feeling so good again but I cried and raged inside. Got rid of it and felt regret as I looked at the pile that once was my laptop.
Not regret for my broken laptop but regret for my broken husband and our broken lives. I had visions of how I could take this cancer and dash it to the ground in the meanest, ugliest, wretched way and watch it break into a million bits and be gone forever to be thrown away.
3.2 seconds of sheer glee. If only.
Oh, to be two years old again....
9:30 a.m.
You know how I now feel about Thursdays. Total torture all wrapped up into a 10 hour day.
Blood Lab.
Radiation.
Chemo for 6 1/2 hours.
Today began as the last three chemo/Thursdays began. Up and feed "Franklin" 15 mg. Valium in the feeding tube at 7:30 to be good and onboard for the dreaded mask.
Apply the Lidocane at 8:30 to numb the port for the IV.
Be at the blood lab by 9:30.
Walk to the radiation clinic for 45 minutes of red-hot skin-shredding beams of radiation then back to the infusion clinic for chemo. (How is it I now know what an "Infusion Clinic" is anyway?)
61/2 hours of chemo then drag my poor man home and put him to bed and hope he doesn't hurl.
Today was an Epic Fail from the start.
I feed "Franklin" and add the Valium.
Out the door and I drive to the Blood Lab. We wait.
I love the Hurry up and wait process. It's much like a busy airport, huh?
They call him in and the phlebotomist is new. She takes blood via the numbed port but then takes the IV out! Grrr. It should remain there for the Chemo drug so not to be stuck twice.
Blood taken and down the elevator to rush to the Radiation Clinic.
Guess What? It's broken AGAIN! Did you hear that silent Yippeeee! From my husband. We both breathe a bit of a sigh of relief. I know... It's not doing any good if the treatment isn't administered but I think a radiation-break is in order. The skin around the neck and throat are almost purple and peeling, swollen this morning so yay, Yippeeee!
We head to the Chemo building for the Cisplatin. Fun.
We get there and of course, wait.
This time they tell us we are waiting on lab reports.
We are ushered into a room to speak to a Nurse Practitioner. You guessed it. The blood values were all wrong. Low platelets, low white and red blood counts. Bad BUN and Creatinine. Am I so wrong to be happy to be a FAIL???
It's like we got a hall pass for the day. Freedom!
I am going to tell you of a fail of a different kind today.
Last night I had a 2 year old melt down. My youngest grand daughter and I have much in common, it seems. When she is mad or frustrated or doesn't get her way, what does she do? She rears herself back, her face turns red and she melts it down like a pro. She's not quite two years old.
Last night I became Tenley in the most childish way. Let me tell you this is like living in a pressure cooker
( Insert lame excuse right here)
Our lives have been turned upside down and inside out and rolled over with a 12 ton bus and 15 Mack Trucks.
It happens.
It completely got ahold of me last night and I lost it. Lost it right in the middle of the kitchen. I felt as tho I couldn't go on for another minute without exploding so I did. I did it right but did it wrong.
I raged inside and then for 3.2 seconds I had the most delicious wonderful feeling as I took my MacBook Pro and dashed it to the ground and watched it as it broke apart in to a hundred electronic pieces on the ceramic floor.
As I said, for 3.2 seconds it felt so right. It felt so medicinal. So Deliciously evil.
When the anger and rage and horror of what I had just done wore off.... I wasn't feeling so good again but I cried and raged inside. Got rid of it and felt regret as I looked at the pile that once was my laptop.
Not regret for my broken laptop but regret for my broken husband and our broken lives. I had visions of how I could take this cancer and dash it to the ground in the meanest, ugliest, wretched way and watch it break into a million bits and be gone forever to be thrown away.
3.2 seconds of sheer glee. If only.
Oh, to be two years old again....
Thursday, July 21, 2011
Chemo: Round Two~ Tomorrow is Friday
Thursday
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
Wednesday, July 20, 2011
Faith Hope and Love?
Wednesday
10:00 a.m.
Radiation Clinic
Our wonderful Radiation clinic is called
Faith Hope & Love.
So many of you have written those sweet words to me which always brought a smile to our faces that you would use those words.
My husband has a new and improved name for the place.
Doom Death and Destruction.
He's a clown I tell ya.
Summer seems to be passing us by. Everything is now "before" he got sick or the present.
This nightmare.
I have to admit, I really liked the "before"... The After he got sick... Not so much.
Our lives have gotten a bit of a pattern. Up not so early like we did when we were fabulous.
I set out each morning and crush pills. I have gotten good at it. The best way is to put the pills on a paper napkin and take a spoon and crush the life out of them. I add them to a kiddie glass then add a bit of water which will then be put into the feeding tube.
Easy Breezy.
They gave me a lame pill crusher to use but I didn't even open it.
My way works. Vitamin B6 for energy. Valium for relaxation for the 45 minutes in radiation wearing that mask he hates so much. (We are going to use it as a pinata and bash the thing to smithereens when this is over. Ole')
Anti-puke pills, blood pressure pills. Diflucan for the thrush that is invading his mouth which is as dry as the Mojave Desert.
Next I help my husband unbandage his tube and get his cans ready and water to flush.
We've got it down to a science. I can dump that liquid food in and flush it in and out in under 20 minutes. Who needs to know how to cook anyway?
Next we get cleaned up and that involves bandage changes to Franklin the Feeding tube and I have to put Press and Seal over the anti-puke patch for a shower.
After a shower, I rebandage him up once again and then out the door for Radiation.
Fun stuff.
His throat and neck are getting more and more painful. He's 15 treatments in and 30 more to go. 9 weeks. That's almost unheard of in the radiation clinic. Nine weeks is a LOT!
This is how he describes his neck to me when I ask how it feels...
10:00 a.m.
Radiation Clinic
Our wonderful Radiation clinic is called
Faith Hope & Love.
So many of you have written those sweet words to me which always brought a smile to our faces that you would use those words.
My husband has a new and improved name for the place.
Doom Death and Destruction.
He's a clown I tell ya.
Summer seems to be passing us by. Everything is now "before" he got sick or the present.
This nightmare.
I have to admit, I really liked the "before"... The After he got sick... Not so much.
Our lives have gotten a bit of a pattern. Up not so early like we did when we were fabulous.
I set out each morning and crush pills. I have gotten good at it. The best way is to put the pills on a paper napkin and take a spoon and crush the life out of them. I add them to a kiddie glass then add a bit of water which will then be put into the feeding tube.
Easy Breezy.
They gave me a lame pill crusher to use but I didn't even open it.
My way works. Vitamin B6 for energy. Valium for relaxation for the 45 minutes in radiation wearing that mask he hates so much. (We are going to use it as a pinata and bash the thing to smithereens when this is over. Ole')
Anti-puke pills, blood pressure pills. Diflucan for the thrush that is invading his mouth which is as dry as the Mojave Desert.
Next I help my husband unbandage his tube and get his cans ready and water to flush.
We've got it down to a science. I can dump that liquid food in and flush it in and out in under 20 minutes. Who needs to know how to cook anyway?
Next we get cleaned up and that involves bandage changes to Franklin the Feeding tube and I have to put Press and Seal over the anti-puke patch for a shower.
After a shower, I rebandage him up once again and then out the door for Radiation.
Fun stuff.
His throat and neck are getting more and more painful. He's 15 treatments in and 30 more to go. 9 weeks. That's almost unheard of in the radiation clinic. Nine weeks is a LOT!
This is how he describes his neck to me when I ask how it feels...
Poor thing has gone for over 3 weeks now with NO food by mouth. Could you even imagine?
Food is my friend and to be without it would be like losing a big part of me. He just has zero appetite but he couldn't eat the real way anyway. His entire mouth throat and neck are being shredded by radiation.
I still hide when I have a meal. My new place to do so is in the car in the garage. I usually take my meal outside, leave the garage door down and eat by the dim glow of the dome light in the car. When I am feeling really perky, I sometimes turn on a CD for ambience. Fun French restaurants, appetizers and champagne seem like a lifetime ago.
It just seems so WRONG to eat in front of a person that can not or will not eat. I can't and won't do it.
Tomorrow is Chemo day.
I dug into my closet for every fabulous sweatsuit I own.
This one was too cute to pass up. I needed retail therapy anyway.
I have uploaded and downloaded books, movies, games, and his favorite music into my iPad and will hopefully have the inclination to write in my blog.
Lately, it has been hard to motivate. I feel this dark cloud of doom looming over us. It's eerie in nature. Each time I go to sit close to my husband, I get this chill that runs thru me. Remember when we were kids, we would say those "back of the spine tingles" were someone walking on our graves. The kind that start at your toes and make your whole being shiver inside? I hate them. I dread even sitting near him for that reason.
When he asks me what's wrong I have to make up some lame reason why I cringe.
Get the F off the grave whoever you are!
Thursday, July 14, 2011
Chemo Day
Thursday
9:00 a.m.
I get "Franklin" ready to feed my husband. No clue when he will get another meal so I double him up. 2 Cans at once. 8 ounces of water before and after to flush.
All we know about today is that radiation is at 10:00 then chemo right across the street at 10:30. I am hustling this morning to get everything done to be On Time if not early, since we are back to back. Radiation then chemo.
We arrive at radiation early. Whew, Sandy, the sweet woman in white who was my angel Day One is there. Her cancer has spread to brain, esophagus and bone. I hadn't seen her for over a week and I was worried. She's here but looks rough. Not a good sign in the radiation clinic waiting room. Usually anyone that is looking bad is not tolerating chemo well. Sandy isn't on chemo since chemo does nothing for brain tumors. She disappears into the back when they call her name but before I can speak to her. Her husband looks worn and shell shocked.
( I know that feeling well.)
Henry is called. His turn for radiation.
I have become friends with so many patients and family members along the way so I sit by my newest BFF Chris. Chris is fighting AIDS and colon cancer but his sense of humor is addicting. We became fast friends instantly.
We chat about nails and hair and being FABULOUS. Chris was a performer and singer before he got sick. He now walks with a limp and has lost his hair. I love him. He has stage II cancer and only 3 more treatments to go.
Please God let him be ok and go into remission.
This world needs Chris. I need a happy ending.
Henry is finished and out of his 11th treatment and we zoom out the door with a merry wave and cheery
Good-Bye to everyone in the waiting room. Most of my new friends now all have cancer.
We race to the Chemo Pavillion. We check in with "Debbie."
(The name has been changed to protect the inept)
We get there 10 minutes early. Whew.
Being late to me is a crime.
We check in and wait....
One hour goes by. Henry tells me he feels like he did before a Big 10 Tournament Game. Iced.
Time is ticking away. It's one of those "Hurry Up and Wait" moments.
Tick tock.
11:30 a.m. Our names are still not called.
Tick tock.
12:00. Noon.
Tick tock.
I am not one to sit still. I get up and begin to pace.
Tick tock
12:30 p.m.
Two hours gone and we have SIX hours to get the chemo once we get in there!
It is now 12:45 p.m..
I can't take it!
I am ready to freak out. Why are we still in a waiting room? Why is this taking so LONG?
I walk the halls again. Pacing. This time I must have had a very frustrated look on my angry red face.
A research doctor asks if I need help.
I unload and unload with a vengeance.
"We have been here for over two hours and we have six hours ahead of us of chemo!"
She goes to see Debbie at her desk where we first checked in.
"Did you check these people in, Debbie?" She asks.
"Oh, I thought I did but must have forgotten!"
Oh, Good God. Let me at this nincompoop.
I am like a deranged bovine with Mad Cow Disease. I want to gouge her eyeballs out with her inkpen!
&*^&%*&
I am usually mild and calm. I told her where I thought she could spend eternity!
I am certain the sun doesn't shine there!
Forgot?
Now, what was to be a 6 hour day just turned into an 8 hour day because some lame woman dropped the ball on him.
It doesnt hurt ME but to think this poor man has an 8 hour day ahead of him for no other reason than sheer stupidity makes me see red. Blood Red.
We are called in instantly.
Funny, the President of Public Relations comes to hold my husband's hand and gush big fat apologies. Casey Anthony is treated better.
A glitch. Just a glitch.
Lets move forward from here.
We arrive in the long room where 15 - 20 reclining chairs are lined against a wall. We get to pick out a pretty puke green recliner with a tv.
This is to be our home for the next 6-7 hours.
Someone forgot to tell us about the prescription for the numbing cream for the chemo port. Ouch. Again, someone dropped the ball. No prescript means a very large needle inserted into that port that was just inserted in his chest.
The area is barely numbed with ice and the needle stuck into that very sensitive skin. The bandages were just removed from that incision yesterday! Ouch.
We take our $375.00 Emends to the clinic thinking it will be administered there.
No.
It can't go Down his throat because he can't swallow. Can't go into his feeding tube because it will clog the G-Tube...
Again, someone dropped the ball. A man with a HUGE tumor in the back of his throat to swallow a very large pill? What to do?
An hour goes by while they figure this out. An IV of Emend and a patch to be worn for a week.
We bought the Emends for nothing. I give it to the clinic for someone who can't afford it or has no insurance.
It'll go to good use.
It begins...
One hour of saline flush.
30 minutes of an IV of steroids.
30 minutes of Emends by IV drip.
The machine beeps when you are finished with each bag.
4:00 p.m.
The Cisplatin is finally administered.
2 hours of this.
Done.
If any of you ever have to experience this (I hope you don't!) I am telling you... Never wear heels or dress pants.
I wore a white blouse, black dress pants and heels. Casual wear for a long day, right?
No! Wear a Sweatsuit and sneakers.
30 more minutes of saline to flush the kidneys and the rest of the body.
What a day!
We are to come back every Thursday for this for the next 8-10 weeks. Lovely.
I have a bad attitude today. It happens, right?
So exhausting and it's not me on radiation or chemo.
Next week I am wearing sweats and sneakers. It's butt-cold in here and uncomfortable as hell.
Gawwww. 6 hours in a chair is brutal. I can't imagine how Henry has done it. So exhausting and I am not on radiation or chemo.
Tomorrow is another day.
Thank you all for the beautiful notes and letters. I spent 4 of these hours reading your notes to my husband. It helps more than you know. You may not know it but you are right here with us. Pull up an ugly green recliner and relax.
I'll Tell "Debbie" that you're here. Ha!
9:00 a.m.
I get "Franklin" ready to feed my husband. No clue when he will get another meal so I double him up. 2 Cans at once. 8 ounces of water before and after to flush.
All we know about today is that radiation is at 10:00 then chemo right across the street at 10:30. I am hustling this morning to get everything done to be On Time if not early, since we are back to back. Radiation then chemo.
We arrive at radiation early. Whew, Sandy, the sweet woman in white who was my angel Day One is there. Her cancer has spread to brain, esophagus and bone. I hadn't seen her for over a week and I was worried. She's here but looks rough. Not a good sign in the radiation clinic waiting room. Usually anyone that is looking bad is not tolerating chemo well. Sandy isn't on chemo since chemo does nothing for brain tumors. She disappears into the back when they call her name but before I can speak to her. Her husband looks worn and shell shocked.
( I know that feeling well.)
Henry is called. His turn for radiation.
I have become friends with so many patients and family members along the way so I sit by my newest BFF Chris. Chris is fighting AIDS and colon cancer but his sense of humor is addicting. We became fast friends instantly.
We chat about nails and hair and being FABULOUS. Chris was a performer and singer before he got sick. He now walks with a limp and has lost his hair. I love him. He has stage II cancer and only 3 more treatments to go.
Please God let him be ok and go into remission.
This world needs Chris. I need a happy ending.
Henry is finished and out of his 11th treatment and we zoom out the door with a merry wave and cheery
Good-Bye to everyone in the waiting room. Most of my new friends now all have cancer.
We race to the Chemo Pavillion. We check in with "Debbie."
(The name has been changed to protect the inept)
We get there 10 minutes early. Whew.
Being late to me is a crime.
We check in and wait....
One hour goes by. Henry tells me he feels like he did before a Big 10 Tournament Game. Iced.
Time is ticking away. It's one of those "Hurry Up and Wait" moments.
Tick tock.
11:30 a.m. Our names are still not called.
Tick tock.
12:00. Noon.
Tick tock.
I am not one to sit still. I get up and begin to pace.
Tick tock
12:30 p.m.
Two hours gone and we have SIX hours to get the chemo once we get in there!
It is now 12:45 p.m..
I can't take it!
I am ready to freak out. Why are we still in a waiting room? Why is this taking so LONG?
I walk the halls again. Pacing. This time I must have had a very frustrated look on my angry red face.
A research doctor asks if I need help.
I unload and unload with a vengeance.
"We have been here for over two hours and we have six hours ahead of us of chemo!"
She goes to see Debbie at her desk where we first checked in.
"Did you check these people in, Debbie?" She asks.
"Oh, I thought I did but must have forgotten!"
Oh, Good God. Let me at this nincompoop.
I am like a deranged bovine with Mad Cow Disease. I want to gouge her eyeballs out with her inkpen!
&*^&%*&
I am usually mild and calm. I told her where I thought she could spend eternity!
I am certain the sun doesn't shine there!
Forgot?
Now, what was to be a 6 hour day just turned into an 8 hour day because some lame woman dropped the ball on him.
It doesnt hurt ME but to think this poor man has an 8 hour day ahead of him for no other reason than sheer stupidity makes me see red. Blood Red.
We are called in instantly.
Funny, the President of Public Relations comes to hold my husband's hand and gush big fat apologies. Casey Anthony is treated better.
A glitch. Just a glitch.
Lets move forward from here.
We arrive in the long room where 15 - 20 reclining chairs are lined against a wall. We get to pick out a pretty puke green recliner with a tv.
This is to be our home for the next 6-7 hours.
Someone forgot to tell us about the prescription for the numbing cream for the chemo port. Ouch. Again, someone dropped the ball. No prescript means a very large needle inserted into that port that was just inserted in his chest.
The area is barely numbed with ice and the needle stuck into that very sensitive skin. The bandages were just removed from that incision yesterday! Ouch.
We take our $375.00 Emends to the clinic thinking it will be administered there.
No.
It can't go Down his throat because he can't swallow. Can't go into his feeding tube because it will clog the G-Tube...
Again, someone dropped the ball. A man with a HUGE tumor in the back of his throat to swallow a very large pill? What to do?
An hour goes by while they figure this out. An IV of Emend and a patch to be worn for a week.
We bought the Emends for nothing. I give it to the clinic for someone who can't afford it or has no insurance.
It'll go to good use.
It begins...
One hour of saline flush.
30 minutes of an IV of steroids.
30 minutes of Emends by IV drip.
The machine beeps when you are finished with each bag.
4:00 p.m.
The Cisplatin is finally administered.
2 hours of this.
Done.
If any of you ever have to experience this (I hope you don't!) I am telling you... Never wear heels or dress pants.
I wore a white blouse, black dress pants and heels. Casual wear for a long day, right?
No! Wear a Sweatsuit and sneakers.
30 more minutes of saline to flush the kidneys and the rest of the body.
What a day!
We are to come back every Thursday for this for the next 8-10 weeks. Lovely.
I have a bad attitude today. It happens, right?
So exhausting and it's not me on radiation or chemo.
Next week I am wearing sweats and sneakers. It's butt-cold in here and uncomfortable as hell.
Gawwww. 6 hours in a chair is brutal. I can't imagine how Henry has done it. So exhausting and I am not on radiation or chemo.
Tomorrow is another day.
Thank you all for the beautiful notes and letters. I spent 4 of these hours reading your notes to my husband. It helps more than you know. You may not know it but you are right here with us. Pull up an ugly green recliner and relax.
I'll Tell "Debbie" that you're here. Ha!
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