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.....
Showing posts with label my husbands cancer. Show all posts
Showing posts with label my husbands cancer. Show all posts
Monday, September 26, 2011
Thursday, August 25, 2011
What a Day
Thursday 5:00 a.m.
I am writing this in complete darkness on my iPad on 3G.
How did we ever get by in life without 3G?
Now that treatments are over and we are "Out to Pasture" I finally made an appointment to get my hair done. Nasty looking roots and scruffy hair. Who am I these days?
I needed a three hour window between feeding tubes, bandage dressings, pills and just being "nurse" and was really looking forward to today.
To go to a salon and forget for three hours and be pampered. *sigh
My three hour hair appointment was going to be like Heaven. Escape.
3 hours in a beauty salon... New sights and smells and people becoming beautiful. Beautiful hasn't been in my vocabulary at all lately. I feel a mess. No feeding tubes or bandages or nausea here... As soon as my sister Karen applies the color to my hair and the foil wraps I take two minutes to call home.
The phone rings. I almost hang up worried that I will have woken him and sleep is so precious right now. It comes and goes for him in 3-5 minute intervals. The mucus is like the Spawn of Satan waiting there to choke or drown.
One more ring and I'm going to hang up and fly out the door foils and all and go check on him. I can peek in the window and just see and know he's alright.
He answers in a sad little croak. "Hello?"
"How are you? Are you ok?" I ask with a load of apprehension sitting on me like a brick bat.
"I'm fine. He answers back but I can tell, Something isn't fine.
"What is it? I can tell by your voice something's up, now spill it. Spill it now!"
I tell him with so much authority.
When did I become so authoritative?
He knows I mean business so he tells me.
"I found a lesion on my tongue. It's small but it hurts."
My heart just sinks and I swear I feel every foil on my head go limp.
A sore on his tongue could mean this stuff is spreading. Already? Treatment just ended on Monday. Does this and can this metastasize so quickly? Not going there. I am being and living and EATING positivity these days. Eating it for breakfast lunch and dinner.
"I'm on my way out the door" I screech into the phone. My voice so high pitched I don't even recognize that it's me once again in panic mode.
"I'm fine Lana. Just relax and then check it when you get back. I shouldn't have told you" he says so weakly into the phone, his voice so tired.
My day at the salon just turned not so fun and I asked Karen to step it up. It's finished and looks fine.
It's hair.
I race home. There is a storm brewing.
Big dark evil looking clouds fill the afternoon sky as I pull into the garage.
I run in the house throwing my handbag and heels to the side like they are enemies and get to work.
I check out this lesion. It's there but not as horrible as I had imagined on the drive home.
I will call the doctor tomorrow or as soon as this storm rages itself out. The wind is picking up and lightning strikes are everywhere outside. The world seems to be groaning in response to my fear of lesions and bad hair.
I set out to feed Henry his meal via his feeding tube. Sometimes I feel like I have a 3 month baby to care for, but as moms we don't mind feedings etc. It's what we do.
Te phone rings as soon as I flush the tube with water and shut it. It's my son telling me to watch the weather reports. It's getting worse outside by the minute.Sheets of sideways rain, hail and wind.
I run to gather candles and flashlights as the dark sky menaces and the wind howls.
I hear a limb crack off the 75 year old trees in the front yard.
The power flickers then goes off with a crack of nearby lightning then goes off.
Total darkness.
My husband is pacing in circles and I can see in the dim light of the flashlight that he is looking the color of a rotten green egg and says he feels nauseous.
My cell phone rings.
It's my mother in law's nurse. Her oxygen is run by electric and the power has been cut off by the storm. Can I come next door and help her? The reserve portable tanks are there and full of precious air but she can't get them running.
Are you serious right now?
I can hear the hail as it bounces off the skylights. :Ping
Lightning strikes are coming faster by the second. The storm intensifies and so does my husbands nausea.
My husband is on his knees puking into the guest powder room toilet. The storm is raging.
Who and what do I do first?
This rescue of my mother in law's oxygen supply has been practiced and rehearsed many times by her in the last 6 months. She lives in constant fear of the power going out and her oxygen being cut off.
She will panic and I know it. She's 95 and very ill herself.
She's 95.
At 95 years old you get one thing in your mind and that's all that's there. Her oxygen situation. She dwells upon it.
Daily.
I asked her once, "Sally, if there's a full on tornado going on and your power goes out, what do you want me to do?"
I truly dreaded her answer. She's 95 you know.
"Why Lana, you come over and get my portable oxygen going for me!"
Simple as that, huh?
Just open the door and do I run over on foot or drive my car? Which is safer in a tornado?
I check on my husband in the weak light of the flashlight. I give him cold washcloths for his mouth and get him settled back into his chair. He's ok just wracked by the heaves to his sore damaged throat and the newly filled feeding tube. Hurling with all that is so painful and traumatic.
I grab my big umbrella.
The storm has not let up one bit.
I brace myself, count to three and run the 200 yards to my Mother In Law's house. My new hair-do or the fear of lightning hitting the umbrella? I throw the umbrella aside and make a dash. Run!
Her oxygen is off, the house is pitch black and the girl we hired to care for her is scared to death. Of the storm or the lack of Sally's oxygen I don't know which.
Her hands are shaking. I can't see her face in the pitch darkness but I can sense her fear.
I get her oxygen running and do most of it by memory in the dark as the storm rages on outside. Done.
Now back home I race across the yard that separates our two houses to check on Henry.
He looks so wan and weak. Pale and puny.
Tomorrow we go for blood work and IV fluids to hopefully give him some pep in his step.
Still no electricity.
10:45 a.m. Thursday
We arrive at the chemo infusion clinic with no showers and half brushed teeth. Mussed up hair and yesterday's clothes on. All this from a girl that would apply blush just to go out to get the mail.
We sit in a private infusion room. No more 3G today as I write this down in my blog. The Chemo clinic has power!
My blog has become my lifeline to the outside of this cancerous world we have found ourselves dumped in to.
Storms are over.
I am writing this in complete darkness on my iPad on 3G.
How did we ever get by in life without 3G?
Now that treatments are over and we are "Out to Pasture" I finally made an appointment to get my hair done. Nasty looking roots and scruffy hair. Who am I these days?
I needed a three hour window between feeding tubes, bandage dressings, pills and just being "nurse" and was really looking forward to today.
To go to a salon and forget for three hours and be pampered. *sigh
My three hour hair appointment was going to be like Heaven. Escape.
3 hours in a beauty salon... New sights and smells and people becoming beautiful. Beautiful hasn't been in my vocabulary at all lately. I feel a mess. No feeding tubes or bandages or nausea here... As soon as my sister Karen applies the color to my hair and the foil wraps I take two minutes to call home.
The phone rings. I almost hang up worried that I will have woken him and sleep is so precious right now. It comes and goes for him in 3-5 minute intervals. The mucus is like the Spawn of Satan waiting there to choke or drown.
One more ring and I'm going to hang up and fly out the door foils and all and go check on him. I can peek in the window and just see and know he's alright.
He answers in a sad little croak. "Hello?"
"How are you? Are you ok?" I ask with a load of apprehension sitting on me like a brick bat.
"I'm fine. He answers back but I can tell, Something isn't fine.
"What is it? I can tell by your voice something's up, now spill it. Spill it now!"
I tell him with so much authority.
When did I become so authoritative?
He knows I mean business so he tells me.
"I found a lesion on my tongue. It's small but it hurts."
My heart just sinks and I swear I feel every foil on my head go limp.
A sore on his tongue could mean this stuff is spreading. Already? Treatment just ended on Monday. Does this and can this metastasize so quickly? Not going there. I am being and living and EATING positivity these days. Eating it for breakfast lunch and dinner.
"I'm on my way out the door" I screech into the phone. My voice so high pitched I don't even recognize that it's me once again in panic mode.
"I'm fine Lana. Just relax and then check it when you get back. I shouldn't have told you" he says so weakly into the phone, his voice so tired.
My day at the salon just turned not so fun and I asked Karen to step it up. It's finished and looks fine.
It's hair.
I race home. There is a storm brewing.
Big dark evil looking clouds fill the afternoon sky as I pull into the garage.
I run in the house throwing my handbag and heels to the side like they are enemies and get to work.
I check out this lesion. It's there but not as horrible as I had imagined on the drive home.
I will call the doctor tomorrow or as soon as this storm rages itself out. The wind is picking up and lightning strikes are everywhere outside. The world seems to be groaning in response to my fear of lesions and bad hair.
I set out to feed Henry his meal via his feeding tube. Sometimes I feel like I have a 3 month baby to care for, but as moms we don't mind feedings etc. It's what we do.
Te phone rings as soon as I flush the tube with water and shut it. It's my son telling me to watch the weather reports. It's getting worse outside by the minute.Sheets of sideways rain, hail and wind.
I run to gather candles and flashlights as the dark sky menaces and the wind howls.
I hear a limb crack off the 75 year old trees in the front yard.
The power flickers then goes off with a crack of nearby lightning then goes off.
Total darkness.
My husband is pacing in circles and I can see in the dim light of the flashlight that he is looking the color of a rotten green egg and says he feels nauseous.
My cell phone rings.
It's my mother in law's nurse. Her oxygen is run by electric and the power has been cut off by the storm. Can I come next door and help her? The reserve portable tanks are there and full of precious air but she can't get them running.
Are you serious right now?
I can hear the hail as it bounces off the skylights. :Ping
Lightning strikes are coming faster by the second. The storm intensifies and so does my husbands nausea.
My husband is on his knees puking into the guest powder room toilet. The storm is raging.
Who and what do I do first?
This rescue of my mother in law's oxygen supply has been practiced and rehearsed many times by her in the last 6 months. She lives in constant fear of the power going out and her oxygen being cut off.
She will panic and I know it. She's 95 and very ill herself.
She's 95.
At 95 years old you get one thing in your mind and that's all that's there. Her oxygen situation. She dwells upon it.
Daily.
I asked her once, "Sally, if there's a full on tornado going on and your power goes out, what do you want me to do?"
I truly dreaded her answer. She's 95 you know.
"Why Lana, you come over and get my portable oxygen going for me!"
Simple as that, huh?
Just open the door and do I run over on foot or drive my car? Which is safer in a tornado?
I check on my husband in the weak light of the flashlight. I give him cold washcloths for his mouth and get him settled back into his chair. He's ok just wracked by the heaves to his sore damaged throat and the newly filled feeding tube. Hurling with all that is so painful and traumatic.
I grab my big umbrella.
The storm has not let up one bit.
I brace myself, count to three and run the 200 yards to my Mother In Law's house. My new hair-do or the fear of lightning hitting the umbrella? I throw the umbrella aside and make a dash. Run!
Her oxygen is off, the house is pitch black and the girl we hired to care for her is scared to death. Of the storm or the lack of Sally's oxygen I don't know which.
Her hands are shaking. I can't see her face in the pitch darkness but I can sense her fear.
I get her oxygen running and do most of it by memory in the dark as the storm rages on outside. Done.
Now back home I race across the yard that separates our two houses to check on Henry.
He looks so wan and weak. Pale and puny.
Tomorrow we go for blood work and IV fluids to hopefully give him some pep in his step.
Still no electricity.
10:45 a.m. Thursday
We arrive at the chemo infusion clinic with no showers and half brushed teeth. Mussed up hair and yesterday's clothes on. All this from a girl that would apply blush just to go out to get the mail.
We sit in a private infusion room. No more 3G today as I write this down in my blog. The Chemo clinic has power!
My blog has become my lifeline to the outside of this cancerous world we have found ourselves dumped in to.
Storms are over.
Sunday, July 31, 2011
Where did I Go?
It's Sunday.
I am usually one to go by schedules and plans and precise time lines.
What's on the agenda today?
What is the plan for the week?
Down to the minute.
You know the drill. We all do that. I no longer know what I am doing day to day or even minute to minute. Our lives are appointments, feeding tubes and clinics, prescriptions, needles and doctors and blah blah blah.
I literally Googled: "What are our lives going to be?"
What came up was "Days of Our Lives" Soap Opera.
Where have our lives gone? I mean our real lives with plans and dreams and events. Parties. Galas.
Yesterday, I went looking for Lana.
Where did she go?
I checked under the beds. I looked in my closet.
Hey! I know these clothes. Chanel, Roberto Cavalli, and Jean Paul Gaultier. Who wears them now? I certainly don't!
I am all about sweatsuits and casual shoes.
I once wrote a blog about coming back off that ledge and not falling into the trap of being a slob.
Meet slob extraordinaire. Ha! Do I care? No. Life isn't handbags and shoes but it's love and support. Health and being there for someone that needs you so badly just to get thru the day.
One thing I know for certain... If I had this disease, I would have opted out.
Opted Out.
I'm not that brave. I'm not that strong.
I'm not that person to depend on anyone for so much.
We have a good friend that needs a heart/lung transplant and has 2 small children. He's 36 years old. Instead of living his life and loving his time left here on Earth, he sits and waits for those organs in a hotel near a hospital 1500 miles away from his wife and his kids.
Waits for someone to die for him to live. A second chance.
4 months have passed and still he sits alone and waits....
That's his choice to do, but for me, I would cherish each day with my family. That's just me. I'm a chicken. I prefer quality over quantity and that goes with my life as well.
Cut my days short by a year, just give me one good week to love and hold and cherish those that I love. Quality.
Friday at the Radiation Clinic I met a new friend. Maureen. She buried her husband on their 48th wedding anniversary. He had throat cancer. (My heart lurched then broke)
Why is she now in the oncology clinic? She was his caretaker for those 18 months that it took for him to die. Now 7 months later, SHE has cancer. Breast cancer.
She was with him when he went thru radiation and chemo. Fed him thru a feeding tube. Suffered right along with him. The cancer returned. They did a total throat and neck resection and removed his jaw, tongue, teeth, larynx.. everything in the neck. Surgery. She was by his side thru it all.
Time passed. It came back once more. Returned to his bones this time.
I didn't know this but bone cancer is the most painful of cancers and no medication can cut that pain. Morphine does nothing. She said for the last 4 months of his life, he screamed and cried, yelled and begged for pain relief for hours in a day. He slept on the hard floor to ease the pain a bit. Her words broke my heart. How did she cope? How did she manage? How did she get thru this? Just writing this down hurts me and all I was was a concerned ear to listen to her. I can't even fathom what she did and how she did it.
This conversation was an interesting one in that several other caretakers of loved ones joined in as we waited for our significant others to be radiated.
Here we were, 6 to 8 of us discussing our loved ones and how to cope. How to get them thru each day as comfortable and healthy as possible.
One beautiful young wife said something to us all that shocked me to my core but didn't seem to phase anyone else there.
She told us all "I have been stockpiling all of the pain medicine that I can. My husband never wants it after a surgery or procedure so I stash it. I have a lot. When the time comes for him to be in that condition, and I will know when that is, I will crush those pills up and "assist" him. I will crush them up and put them into his feeding tube."
WHAT?
"That's Murder!" I exclaimed loudly. No No No!
Those words were out of mouth in a nanosecond! All eyes turned to look at me. My heart dropped. What did I say? Was I wrong to say that? Isn't that murder? No way could or would I ever do that! I can't even wrap my brain around that thought.
My new friend Maureen took my hand and gently said to me "You'd be surprised what you can or will do. You would do this for your dog or cat. The suffering is worse than you can imagine. Pain pills wouldn't have helped my husband's pain but if they would have, I would have done anything. Anything. They will just know he died of Chronic Cancer."
I recoiled in horror.
I wanted to scream and run away and never look back. I felt for that two minute conversation that I was 4 years old again and so scared. Eyes wide. Tears streaming down my face. No one to turn to. No one to ask for advice. I can't do this anymore.
Thankfully, from the corner of my eye I see my husband slowly approaching. His treatment is over for the day.
I want to run up to him and hold on and never let him go. I'm not going to tell him about Maureen or crushed pills or any of the horror of that conversation.
I am going to run home and look under the beds again for Lana. She's around here somewhere, I just know it....
I am usually one to go by schedules and plans and precise time lines.
What's on the agenda today?
What is the plan for the week?
Down to the minute.
You know the drill. We all do that. I no longer know what I am doing day to day or even minute to minute. Our lives are appointments, feeding tubes and clinics, prescriptions, needles and doctors and blah blah blah.
I literally Googled: "What are our lives going to be?"
What came up was "Days of Our Lives" Soap Opera.
Where have our lives gone? I mean our real lives with plans and dreams and events. Parties. Galas.
Yesterday, I went looking for Lana.
Where did she go?
I checked under the beds. I looked in my closet.
Hey! I know these clothes. Chanel, Roberto Cavalli, and Jean Paul Gaultier. Who wears them now? I certainly don't!
I am all about sweatsuits and casual shoes.
I once wrote a blog about coming back off that ledge and not falling into the trap of being a slob.
Meet slob extraordinaire. Ha! Do I care? No. Life isn't handbags and shoes but it's love and support. Health and being there for someone that needs you so badly just to get thru the day.
One thing I know for certain... If I had this disease, I would have opted out.
Opted Out.
I'm not that brave. I'm not that strong.
I'm not that person to depend on anyone for so much.
We have a good friend that needs a heart/lung transplant and has 2 small children. He's 36 years old. Instead of living his life and loving his time left here on Earth, he sits and waits for those organs in a hotel near a hospital 1500 miles away from his wife and his kids.
Waits for someone to die for him to live. A second chance.
4 months have passed and still he sits alone and waits....
That's his choice to do, but for me, I would cherish each day with my family. That's just me. I'm a chicken. I prefer quality over quantity and that goes with my life as well.
Cut my days short by a year, just give me one good week to love and hold and cherish those that I love. Quality.
Friday at the Radiation Clinic I met a new friend. Maureen. She buried her husband on their 48th wedding anniversary. He had throat cancer. (My heart lurched then broke)
Why is she now in the oncology clinic? She was his caretaker for those 18 months that it took for him to die. Now 7 months later, SHE has cancer. Breast cancer.
She was with him when he went thru radiation and chemo. Fed him thru a feeding tube. Suffered right along with him. The cancer returned. They did a total throat and neck resection and removed his jaw, tongue, teeth, larynx.. everything in the neck. Surgery. She was by his side thru it all.
Time passed. It came back once more. Returned to his bones this time.
I didn't know this but bone cancer is the most painful of cancers and no medication can cut that pain. Morphine does nothing. She said for the last 4 months of his life, he screamed and cried, yelled and begged for pain relief for hours in a day. He slept on the hard floor to ease the pain a bit. Her words broke my heart. How did she cope? How did she manage? How did she get thru this? Just writing this down hurts me and all I was was a concerned ear to listen to her. I can't even fathom what she did and how she did it.
This conversation was an interesting one in that several other caretakers of loved ones joined in as we waited for our significant others to be radiated.
Here we were, 6 to 8 of us discussing our loved ones and how to cope. How to get them thru each day as comfortable and healthy as possible.
One beautiful young wife said something to us all that shocked me to my core but didn't seem to phase anyone else there.
She told us all "I have been stockpiling all of the pain medicine that I can. My husband never wants it after a surgery or procedure so I stash it. I have a lot. When the time comes for him to be in that condition, and I will know when that is, I will crush those pills up and "assist" him. I will crush them up and put them into his feeding tube."
WHAT?
"That's Murder!" I exclaimed loudly. No No No!
Those words were out of mouth in a nanosecond! All eyes turned to look at me. My heart dropped. What did I say? Was I wrong to say that? Isn't that murder? No way could or would I ever do that! I can't even wrap my brain around that thought.
My new friend Maureen took my hand and gently said to me "You'd be surprised what you can or will do. You would do this for your dog or cat. The suffering is worse than you can imagine. Pain pills wouldn't have helped my husband's pain but if they would have, I would have done anything. Anything. They will just know he died of Chronic Cancer."
I recoiled in horror.
I wanted to scream and run away and never look back. I felt for that two minute conversation that I was 4 years old again and so scared. Eyes wide. Tears streaming down my face. No one to turn to. No one to ask for advice. I can't do this anymore.
Thankfully, from the corner of my eye I see my husband slowly approaching. His treatment is over for the day.
I want to run up to him and hold on and never let him go. I'm not going to tell him about Maureen or crushed pills or any of the horror of that conversation.
I am going to run home and look under the beds again for Lana. She's around here somewhere, I just know it....
Wednesday, July 13, 2011
10 Days of Radiation & My EyeBrow Hates Me!
Yay! Today was Day 10 of Radiation.
10 down... 30 more to go.
Day 10 and my husband's throat on the outside is red. Inside, he says it hurts and hurts bad. Swallowing is beginning to be painful and difficult. The radiation is also kicking his butt. Tired and worn out just to walk to the car.
I have read that by Day 12 it will be like entering hell.
By 3 weeks, He will feel like he has a Weber Grill inside his throat turned on to High Roast. Right now, all he has to drink is GatorAde and water. The rest I give him via his tube. I named it Franklin. "Time to feed Franklin."
I am up to giving him 6 cans a day of the Iosource liquid food. It's a breeze. I have the process down to 10 minutes per can and or feeding.
Tomorrow begins Chemotherapy.
Why has it taken this long to begin the chemo if chemo kills the cancer cells? That has been my burning question since this whole nightmare began. If radiation shrinks the tumors and chemo kills them... Why the delay.
You will never believe the reason WHY.
Money.
Yes, money.
We have insurance out the wahazoo. 3 different polices to supplement the one before it. None of the three would approve the chemo since they had never heard of Large Cell Undifferentiated NeuroEndocrine Cancer.
Right... They think we are faking this crap or what? We needed to start chemo 2 weeks ago!
Money.
Cancer is big business. Really big business and we are just one tiny cog in the wheel of how this money making machine works. So... Until they approved it today at 4:45 we weren't able to get the treatments. Amazing and so sad.
Not that anyone wants to worry about money when your health is concerned but just for the Emends Capsules to fight nausea, those must be taken for three days and one packet of 3 capsules is $375.00 to be given once a week for the next 5 months.
$10,000.00 just to keep from puking.
Sigh, tomorrow is the big day.
Radiation treatment at 10:00 a.m. then right to the Chemo lab to sit for 6 straight hours of chemo therapy. The chemo port is in place. It has a wire that runs into the artery under the collar bone and into the main artery that leads to the heart and sits there right at the top of the heart. "Why can you not take chemo in the wrist vein?" I asked the doctor.
"Because it would shred them in 10 minutes. This Cisplatin is a tough drug. Much like Mustard Gas. It keeps cancer cells from dividing and kills the bad cells but unfortunately kills good cells as well. I just want the dirty bastards gone!
In the meantime, I had to go to the doctor myself. I REFUSE to ever go back to our family doctor because of that witch secretary and have no time to search for another family doctor so I called my Gynecologist. He ordered chest x-rays for a persistent cough. I truly believe it's all stress.
Today I laughed until I cried.
I was telling my husband as I coughed up a lung that I hope this x-ray shows nothing.
He pipes up and says "Oh Lana, I cough all the time and it's nothing to worry about. Trust me."
I peered up at him and lost it!
I am going to take medical advice from a man with a chemo port, feeding tube, tumors the size of life vests in his throat and two rare forms of cancer? Ha! I'm not sure why but I found that hysterical and most especially so since he was dead pan serious!
It was good to laugh. I thought I had forgotten how....
Speaking of stress... I now have this bewildering twitch in my left eyebrow.
OMG. I sit and talk to doctors and nurses and techs and the entire time they are explaining upcoming procedures to me, my eyebrow is twitching. Tic tic tic. It's so hard to concentrate while my eye is going all over the planet. I feel like such a dork. tic tic tic.
I wonder if they notice.
As the day it goes on it gets worse. tic tic tic..... Argggh. All day long! My eyebrow doing the booty dance. Salsa.
Have some chemo and knock it off! Lame eyebrow.
I swear.
10 down... 30 more to go.
Day 10 and my husband's throat on the outside is red. Inside, he says it hurts and hurts bad. Swallowing is beginning to be painful and difficult. The radiation is also kicking his butt. Tired and worn out just to walk to the car.
I have read that by Day 12 it will be like entering hell.
By 3 weeks, He will feel like he has a Weber Grill inside his throat turned on to High Roast. Right now, all he has to drink is GatorAde and water. The rest I give him via his tube. I named it Franklin. "Time to feed Franklin."
I am up to giving him 6 cans a day of the Iosource liquid food. It's a breeze. I have the process down to 10 minutes per can and or feeding.
Tomorrow begins Chemotherapy.
Why has it taken this long to begin the chemo if chemo kills the cancer cells? That has been my burning question since this whole nightmare began. If radiation shrinks the tumors and chemo kills them... Why the delay.
You will never believe the reason WHY.
Money.
Yes, money.
We have insurance out the wahazoo. 3 different polices to supplement the one before it. None of the three would approve the chemo since they had never heard of Large Cell Undifferentiated NeuroEndocrine Cancer.
Right... They think we are faking this crap or what? We needed to start chemo 2 weeks ago!
Money.
Cancer is big business. Really big business and we are just one tiny cog in the wheel of how this money making machine works. So... Until they approved it today at 4:45 we weren't able to get the treatments. Amazing and so sad.
Not that anyone wants to worry about money when your health is concerned but just for the Emends Capsules to fight nausea, those must be taken for three days and one packet of 3 capsules is $375.00 to be given once a week for the next 5 months.
$10,000.00 just to keep from puking.
Sigh, tomorrow is the big day.
Radiation treatment at 10:00 a.m. then right to the Chemo lab to sit for 6 straight hours of chemo therapy. The chemo port is in place. It has a wire that runs into the artery under the collar bone and into the main artery that leads to the heart and sits there right at the top of the heart. "Why can you not take chemo in the wrist vein?" I asked the doctor.
"Because it would shred them in 10 minutes. This Cisplatin is a tough drug. Much like Mustard Gas. It keeps cancer cells from dividing and kills the bad cells but unfortunately kills good cells as well. I just want the dirty bastards gone!
In the meantime, I had to go to the doctor myself. I REFUSE to ever go back to our family doctor because of that witch secretary and have no time to search for another family doctor so I called my Gynecologist. He ordered chest x-rays for a persistent cough. I truly believe it's all stress.
Today I laughed until I cried.
I was telling my husband as I coughed up a lung that I hope this x-ray shows nothing.
He pipes up and says "Oh Lana, I cough all the time and it's nothing to worry about. Trust me."
I peered up at him and lost it!
I am going to take medical advice from a man with a chemo port, feeding tube, tumors the size of life vests in his throat and two rare forms of cancer? Ha! I'm not sure why but I found that hysterical and most especially so since he was dead pan serious!
It was good to laugh. I thought I had forgotten how....
Speaking of stress... I now have this bewildering twitch in my left eyebrow.
OMG. I sit and talk to doctors and nurses and techs and the entire time they are explaining upcoming procedures to me, my eyebrow is twitching. Tic tic tic. It's so hard to concentrate while my eye is going all over the planet. I feel like such a dork. tic tic tic.
I wonder if they notice.
As the day it goes on it gets worse. tic tic tic..... Argggh. All day long! My eyebrow doing the booty dance. Salsa.
Have some chemo and knock it off! Lame eyebrow.
I swear.
Sunday, June 26, 2011
Getting My Big Girl Panties Ready for Tuesday
It's Sunday.
Yesterday and today we seem to have a bit of respite. No tests or reports.
No appointments. These two days we are calling "Our Positive Days."
Saturday. Sunday.
No thinking talking or looking at negative allowed, only positive.
If we squint our eyes really tight, I mean REAL REAL tight, these two days we can almost forget this mess. Ha! Who am I kidding? I tried it and it isn't working.
On Friday around 4:00 our family doctor and friend's office secretary called.
The Biopsy Pathology report was in..... Breathe.
What will it say?
My husband left his cell phone with me in case she calls and told me to have the results sent to
1. Our Dr. at IU Med Center
2. A Dr. we were told is the BEST at MD Anderson, Huston
3. Here. Home.
He left to go sign papers at his office (which he has neglected.)
His cell phone rings. It's the Path report. I tell the secretary who and where to fax it and she begins by telling me...
"It's Bad, Lana. Really really BAD!" I am floored.
"How Bad?" I ask.
"What about it makes it bad? Tell me. I have to know. I have to be ready before he gets home!"
She just keeps repeating those words...
"It's Bad! It's not good. It's Bad. It's Bad."
By now I am like an animal. Feral and screaming. Sobbing. Begging.
I HAVE TO KNOW!
The faxes are coming in. Page after page after page. I can't read it thru the tears and begging her for information. Medical information that I am clueless about. I have the papers but feel like a 2 year and can not READ it. What does it mean? What does it say?
She repeats over and over that it's Bad finally telling me it's against the law to tell me any information over the phone!
By now I am hysterical. About to literally climb up a wall.
"Tell me now! What does it say and what makes it so much more BAD than what we already KNOW! PLEASE!"
She hangs up saying "I can't tell you."
I go into complete and utter despair. I finally gather myself enough to call my daughter in law who is an RN and she flies here leaving my 3 grandkids and my son with a rushed message "Watch the kids. I'm outta here."
We pore over these reports watching the clock like Russian Spy Double Agents going over secret documents at the Pentagon . We can't have this report in our hands and my husband walk in the door!
It would be horrible for him to see us in such a state. I text his office to tell them:
Keep Him THERE!
This is a Pathologists reports with stains and graphs and medical lingo we don't understand. I call my brother who is an anesthesiologist but is in Singapore.
27 pages of info and we only make out a few words that jump off the pages. The fear leaves us both ice cold.
Three words jump off the pages:
Metastatic
Lung
Endocrine Carcinoma
My daughter in law and I are clutched in absolute fear. She asked me if I want her to be there when my husband does get home to tell him what the report has circled and underlined? (Medical words and phrases that may as well be written in Chinese.)
God No!
To have my sweet DIL be the one to tell him anything bad would be horrific and unfair to her. What do we do?
Do I tell him? Do I hold this secret all weekend until we see the Biopsy Surgeon on TUESDAY???? Oh my God! I will never make it to Tuesday.
My DIL leaves.
2 minutes later, my dear husband comes home and dilemma I'm in is answered the second he sees me. "You look like you just got ran over. What's wrong. What does it say"?
We read it together but thankfully, he can't make sense of it either so we wait.....
Tuesday.
Yesterday and today we seem to have a bit of respite. No tests or reports.
No appointments. These two days we are calling "Our Positive Days."
Saturday. Sunday.
No thinking talking or looking at negative allowed, only positive.
If we squint our eyes really tight, I mean REAL REAL tight, these two days we can almost forget this mess. Ha! Who am I kidding? I tried it and it isn't working.
On Friday around 4:00 our family doctor and friend's office secretary called.
The Biopsy Pathology report was in..... Breathe.
What will it say?
My husband left his cell phone with me in case she calls and told me to have the results sent to
1. Our Dr. at IU Med Center
2. A Dr. we were told is the BEST at MD Anderson, Huston
3. Here. Home.
He left to go sign papers at his office (which he has neglected.)
His cell phone rings. It's the Path report. I tell the secretary who and where to fax it and she begins by telling me...
"It's Bad, Lana. Really really BAD!" I am floored.
"How Bad?" I ask.
"What about it makes it bad? Tell me. I have to know. I have to be ready before he gets home!"
She just keeps repeating those words...
"It's Bad! It's not good. It's Bad. It's Bad."
By now I am like an animal. Feral and screaming. Sobbing. Begging.
I HAVE TO KNOW!
The faxes are coming in. Page after page after page. I can't read it thru the tears and begging her for information. Medical information that I am clueless about. I have the papers but feel like a 2 year and can not READ it. What does it mean? What does it say?
She repeats over and over that it's Bad finally telling me it's against the law to tell me any information over the phone!
By now I am hysterical. About to literally climb up a wall.
"Tell me now! What does it say and what makes it so much more BAD than what we already KNOW! PLEASE!"
She hangs up saying "I can't tell you."
I go into complete and utter despair. I finally gather myself enough to call my daughter in law who is an RN and she flies here leaving my 3 grandkids and my son with a rushed message "Watch the kids. I'm outta here."
We pore over these reports watching the clock like Russian Spy Double Agents going over secret documents at the Pentagon . We can't have this report in our hands and my husband walk in the door!
It would be horrible for him to see us in such a state. I text his office to tell them:
Keep Him THERE!
This is a Pathologists reports with stains and graphs and medical lingo we don't understand. I call my brother who is an anesthesiologist but is in Singapore.
27 pages of info and we only make out a few words that jump off the pages. The fear leaves us both ice cold.
Three words jump off the pages:
Metastatic
Lung
Endocrine Carcinoma
My daughter in law and I are clutched in absolute fear. She asked me if I want her to be there when my husband does get home to tell him what the report has circled and underlined? (Medical words and phrases that may as well be written in Chinese.)
God No!
To have my sweet DIL be the one to tell him anything bad would be horrific and unfair to her. What do we do?
Do I tell him? Do I hold this secret all weekend until we see the Biopsy Surgeon on TUESDAY???? Oh my God! I will never make it to Tuesday.
My DIL leaves.
2 minutes later, my dear husband comes home and dilemma I'm in is answered the second he sees me. "You look like you just got ran over. What's wrong. What does it say"?
We read it together but thankfully, he can't make sense of it either so we wait.....
Tuesday.
Sunday, June 19, 2011
What's in the Future?
What does the future hold for anyone?
We go thru each day doing our daily activities and never know what the future will hold. We have been experiencing a Time Warp of a Future on Crack! We don't know what we will be doing tomorrow, the next day or even next week.
I blew up my car. Do we buy a new one or do I stick with my Company Car even tho I'm not doing "company" things? Do I even need a car right now? Does that even matter?
In the Grand Scheme of thing....No!
Tomorrow is the PET Scan which is a full-body scan to see what's going on inside you. They inject you with a mixture of radiation dye and glucose. No carbs or sugars the night before or you will overload. They leave that hot-juice in your body for 1 hour then run you thru the scan to detect anything and everything inside you.
If this cancer has spread beyond the head and neck, we are FUCKED! Sorry but it's the only way I care to describe it.
Yesterday, we were to attend our friends daughter's gala wedding but instead, we went to look for cemetery plots. Not that we are not being positive here, we are just being REAL.
I had shopped and searched for the perfect dress for the last 2 weeks for this wedding. It was crucial that I have the right style and look like class. Everyone we know was invited.
A gorgeous Zac Posen dress was in my possession with cute Jimmy Choo shoes to match. I was giddy with excitement. You know how it is when you feel your outfit for that upcoming special event looks good on you and you just know you will feel confident and the stress of being worried about your style is non existent. Ha!
That dress and shoes don't mean a thing. Handbags and lipsticks? They mean zilch.
JuicyTuesday wrote me a note and told me something that really sticks in my head....
Health is Wealth
I will write that again....
Health is Wealth.
Anyway, back to Zac Posen.
I told a dear friend of mine that we were going to spend our day on Saturday not going to the wedding but instead going to find Eternal resting places side by side. She gave me one very good idea...
Wear the Zac Posen to the cemetery!
I did just that.
My darling husband, Jimmy Choo, Zac Posen and I all traipsed thru the serene grounds and we found the perfect place.
You may think I am being morbid. It wasn't at all. It was actually very peaceful and had a comforting presence there among the tall trees and beautiful quiet of flowers and silence. We found a spot near a sloping hill with sunshine and whispering trees nearby.
I hope all of you don't get depressed by my blog. It's theraputic for me. I am usually crying big tears as I type. It's also a way for me to express my thoughts and give family and far away friends an update. I know I need to announce this to my wonderful YouTube viewers in a video but I am so raw right now, I'm not sure I can. I appreciate you all more than you know. Each and every note and letter I get is going in the pocket inside my husbands heart tomorrow and all the good wishes and prayers will be going thru that PET Scan as well and I hope they come out on the other side with just ONE day of GOOD news.
If not...
We go thru each day doing our daily activities and never know what the future will hold. We have been experiencing a Time Warp of a Future on Crack! We don't know what we will be doing tomorrow, the next day or even next week.
I blew up my car. Do we buy a new one or do I stick with my Company Car even tho I'm not doing "company" things? Do I even need a car right now? Does that even matter?
In the Grand Scheme of thing....No!
Tomorrow is the PET Scan which is a full-body scan to see what's going on inside you. They inject you with a mixture of radiation dye and glucose. No carbs or sugars the night before or you will overload. They leave that hot-juice in your body for 1 hour then run you thru the scan to detect anything and everything inside you.
If this cancer has spread beyond the head and neck, we are FUCKED! Sorry but it's the only way I care to describe it.
Yesterday, we were to attend our friends daughter's gala wedding but instead, we went to look for cemetery plots. Not that we are not being positive here, we are just being REAL.
I had shopped and searched for the perfect dress for the last 2 weeks for this wedding. It was crucial that I have the right style and look like class. Everyone we know was invited.
A gorgeous Zac Posen dress was in my possession with cute Jimmy Choo shoes to match. I was giddy with excitement. You know how it is when you feel your outfit for that upcoming special event looks good on you and you just know you will feel confident and the stress of being worried about your style is non existent. Ha!
That dress and shoes don't mean a thing. Handbags and lipsticks? They mean zilch.
JuicyTuesday wrote me a note and told me something that really sticks in my head....
Health is Wealth
I will write that again....
Health is Wealth.
Anyway, back to Zac Posen.
I told a dear friend of mine that we were going to spend our day on Saturday not going to the wedding but instead going to find Eternal resting places side by side. She gave me one very good idea...
Wear the Zac Posen to the cemetery!
I did just that.
My darling husband, Jimmy Choo, Zac Posen and I all traipsed thru the serene grounds and we found the perfect place.
You may think I am being morbid. It wasn't at all. It was actually very peaceful and had a comforting presence there among the tall trees and beautiful quiet of flowers and silence. We found a spot near a sloping hill with sunshine and whispering trees nearby.
I hope all of you don't get depressed by my blog. It's theraputic for me. I am usually crying big tears as I type. It's also a way for me to express my thoughts and give family and far away friends an update. I know I need to announce this to my wonderful YouTube viewers in a video but I am so raw right now, I'm not sure I can. I appreciate you all more than you know. Each and every note and letter I get is going in the pocket inside my husbands heart tomorrow and all the good wishes and prayers will be going thru that PET Scan as well and I hope they come out on the other side with just ONE day of GOOD news.
If not...
Saturday, June 18, 2011
Scans and Needles and Probes... Oh My!
Remember what seems like months ago but was only days ago I was BEGGING for answers?
Ha! Now I don't want any more answers. I want to rewind to two weeks ago when we were just a normal happy American couple living the normal happy American Dream.
Working, laughing, enjoying life as everyone else does.
R-E-W-I-N-D
If only it could be that easy.
I look at my husband and I have to rush to a room where I can close the door or hide behind a bed or wall to cry. I must stay strong. If he sees me break I swear he may crumble and we have the fight of our lives ahead of us.
We drove for miles to get a biopsy consult. This was supposed to be No Big Deal. The Ear Nose and Throat specialist was to tell us what kind of biopsy and how the procedure would go. Instead, he read the previous CT Scans and decided to do a light probe right there in the office. He stuck a very long piece of cotton gauze soaked in a numbing agent up his nose, left it there 10 minutes, came back and then shoved a light down his throat and looked around.
As of now the official name is Squamous Cell Carcinoma of the Tonsils and Throat.
The EXACT same cancer that Michael Douglas had.
But....
He has ordered more tests. A PET Scan, EKG ( to see if he's strong enough for what's ahead) and more Blood work on Monday.
A PET Scan is a full body scan to check to see if this monster has spread to other organs.
Dear God, please let it not have spread.
The lymph glands are 3 times the size of what they should be and his windpipe is being strangled by these cancerous tumors. There are 6 lymph glands in your neck. 5 of his are huge and growing.
Time is not our friend anymore.
We used to make lists of things we had to do:
*Fly to Miami
*Gas up the cars
*Pack for a trip
*Buy new shoes and a dress for a gala event
*Go to a Wedding today
Yesterday, we made an entire new kind of list that made me want to hide in a closet and never come out:
*Buy a cemetery plot
*Pre-pay for our funerals
*Get our banking affairs in order
*Tell his 95 year old mom that her only son has Stage 4 cancer
*Meet with all the kids and break the news
*Tell as many of our friends that we can
*Call our dear friend and cancel our plans to attend his daughter's wedding. (I bought the most fabulous Zac Posen dress to wear but now Who really cares?)
*Find a doctor in Huston TX at MD Anderson that specializes in this type of cancer
*Decide if before treatment begins to get a feeding tube placed because his throat will be burnt to shreds by the radiation. Drinking water will be like entering the gates of hell for 6 to 8 weeks of radiation and chemo.
I apologize for being so depressing. You all know me. I am always one to make droll boring things into funny fabulous things. I can't seem to find one thing fun or fabulous anymore. At least not right now....
Ha! Now I don't want any more answers. I want to rewind to two weeks ago when we were just a normal happy American couple living the normal happy American Dream.
Working, laughing, enjoying life as everyone else does.
R-E-W-I-N-D
If only it could be that easy.
I look at my husband and I have to rush to a room where I can close the door or hide behind a bed or wall to cry. I must stay strong. If he sees me break I swear he may crumble and we have the fight of our lives ahead of us.
We drove for miles to get a biopsy consult. This was supposed to be No Big Deal. The Ear Nose and Throat specialist was to tell us what kind of biopsy and how the procedure would go. Instead, he read the previous CT Scans and decided to do a light probe right there in the office. He stuck a very long piece of cotton gauze soaked in a numbing agent up his nose, left it there 10 minutes, came back and then shoved a light down his throat and looked around.
As of now the official name is Squamous Cell Carcinoma of the Tonsils and Throat.
The EXACT same cancer that Michael Douglas had.
But....
He has ordered more tests. A PET Scan, EKG ( to see if he's strong enough for what's ahead) and more Blood work on Monday.
A PET Scan is a full body scan to check to see if this monster has spread to other organs.
Dear God, please let it not have spread.
The lymph glands are 3 times the size of what they should be and his windpipe is being strangled by these cancerous tumors. There are 6 lymph glands in your neck. 5 of his are huge and growing.
Time is not our friend anymore.
We used to make lists of things we had to do:
*Fly to Miami
*Gas up the cars
*Pack for a trip
*Buy new shoes and a dress for a gala event
*Go to a Wedding today
Yesterday, we made an entire new kind of list that made me want to hide in a closet and never come out:
*Buy a cemetery plot
*Pre-pay for our funerals
*Get our banking affairs in order
*Tell his 95 year old mom that her only son has Stage 4 cancer
*Meet with all the kids and break the news
*Tell as many of our friends that we can
*Call our dear friend and cancel our plans to attend his daughter's wedding. (I bought the most fabulous Zac Posen dress to wear but now Who really cares?)
*Find a doctor in Huston TX at MD Anderson that specializes in this type of cancer
*Decide if before treatment begins to get a feeding tube placed because his throat will be burnt to shreds by the radiation. Drinking water will be like entering the gates of hell for 6 to 8 weeks of radiation and chemo.
I apologize for being so depressing. You all know me. I am always one to make droll boring things into funny fabulous things. I can't seem to find one thing fun or fabulous anymore. At least not right now....
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