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.
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.
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....
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....
Wednesday
7:30 p.m.
Each day is getting more brutal.
My husbands throat is sore and bleeding again.
His neck is red and looks like he was beat with a red hot poker.
Bright Red and looks mean.
We were told two weeks from today is the last radiation treatment (Unless something goes awry)
That's 10 more days of Radiation.
It's getting more and more difficult as each day goes by. A simple sip of water is like entering the gates of hell.
I have never known anyone so brave in my life.
All of my friends and everyone I know. Family. Everyone. They all tell me I have been amazing thru this. I haven't been. I cringe inside when they say that to me. How do you respond?
What do you say? "Thank You?"
No.
I have just done exactly what I know he would have done and would do for me if the situation was reversed. "Til Death do us Part. For Richer and For Poorer.
In Sickness and in Health."
Tonight.
Tonight was the worst day of all.
My husband looked me in my eyes. Looked at me all the way down to my soul and whispered out one simple question.
"Am I dying?"
I can't write more. Tears and anguish. Fear. Heartache.
Tears.
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....
