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.
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!
OMG OMG OMG
Monday
10:00 a.m.
Radiation Clinic
Today, while waiting the 45 minutes for Henry to complete his radiation treatment for the day (5 more to go. Yippeee.) there was a couple waiting on the ugly hard chairs in the corner of the clinic. I noticed them right away as the automatic door slid shut behind us with a whoosh as we entered the clinic.
Why is that so remarkable? Why was this couple so special to catch my eye? This man was probably 45 years old and at first glance, I knew.
I knew he had the same kind of disease my husband has.
His neck was distorted and jawbone was gone.
His face was scarred and to some would say scary.
I was like a 3 year old kid and couldn't keep my eyes from slinking over to that corner, not to stare but to get up the nerve to ask what and how and why and.....
Our friends, the one that has brain cancer, walked in and I saw my opportunity to speak to this couple fading away.
We had a few pleasant words of weekend activities and his progress with his brain cancer but I know I was being rude in my distraction. My scope of attention was not on them but on the man with the neck surgery that sat in the corner.
Time was slipping away.
My opportunity was passing.
I finally excused myself and walked over to the corner and introduced myself.
You have to understand one thing about a Cancer Clinic.
No one cares or feels invaded by questions. We are all in this exclusive private club that requires a stamped membership card. A membership that no one wants to be in but we all are. It's almost an unspoken pact that we can share and explain and ask questions of each other and their cancer. It's almost expected somehow. It's part of the Club Rules.
Sharing is Caring.
How do you approach and ask a disfigured person the details of his pain? How do you ask him to tell you things you have to date only read about on the internet? This was like being in a foreign country and finally seeing another American to speak to. A sense of camaraderie in a sick twisted way.
I began.
I explained my husband just went in for his treatment and has stage IV High Grade 4 throat cancer and I noticed his surgery scars.
This gentleman was amazing. He answered every question I asked. He explained the hows and whys and what to expect.
His wife was with him and explained to me the trauma of seeing her husband after a 16 hour surgery to dissect her husbands neck and throat and the horror she felt when she saw him in recovery. He told me about the stares and questions he gets from the public.
After a 20 minute conversation, he told me why he is here.
Why he is back in the radiation clinic?
You see, you can only have ONE series of treatments of radiation to your neck and throat. The spinal cord is so close to the area they are radiating. I can see the lines of demarkation where the radiation is burning and searing my husbands skin. It is like a severe sunburn all around to the back.
I follow the burn lines around to the back. There is about an inch space along the backbone that has no burns but wow, they are so close. Too much and you could be paralyzed for life. *sigh*
This young man's cancer had returned.
It was back with a vengeance.
It was now in his lung and bones and brain. He said he had found a huge tumor on his back that morning. A new one.
Radiation at this point for him is palliative. Palliative meaning only to prolong life for a short time and keep the patient as comfortable as possible for as long as possible.
Have you ever wanted to hug a complete stranger? Have you ever had your heart break from someone else's sad sad story?
My questions were answered.
My answers were already answered by husband at the beginning of this horrible journey. He refuses the surgery 100%.
I have been asked by so many from the beginning.
"Why not do surgery at the beginning of this nightmare and just cut the tumor OUT?"
That sounds so easy.
No risk of spinal cords and burns and pain. No chemo. No nausea. None of that.
The reason we can't go that route?
When a patient has a cancerous tumor, the surgeon must be able to cut it out and the margins beside it. The margins are all of the surrounding areas nearby. The surgeon will cut out the tumor and keep at it and at it, cutting until he gets clear tissue and then more to be assured all of the tumor is gone. You must have good margins to remove a tumor.
In your throat and neck, that area is so very small and tight that it is nearly impossible to get those margins.
My husband not only has a huge tumor in the back of the throat but many large tumors in the neck and lymph. Impossible.
Once the tumors have shrunk I just know the doctors will want to discuss that as an option. Surgery.
Take out the tongue, voice box, thyroid, jaw bones, muscles, teeth, omg. I can't even write more of that thought process.
I went to see my grandkids yesterday. Three little medicine balls of fun they are.
My son prays with them every night before bed. He asks God to keep his family safe and to keep harm away from his family and his home.
My middle Grand daughter, Kennedi asked with big blue eyes wide,
"Daddy, Who is Harm and why is he coming to OUR house?"
I pray to keep harm away from all of YOU.
All of you that are here with us on this journey. We are amazed and feel so blessed by all of your thoughts and love and prayers.
These days I write my blog and can not see for the tears flooding my eyes. I write it to put my heart and thoughts out there for my family and friends. All of you. You push me. You push us both. I feel you there. We both do. I love you.
Dear God,
Please keep harm away from all of us. Please keep harm away from my old friends and all of my new friends
and all of our families.
Amen
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.
