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!
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Monday, August 22, 2011
Thursday, July 21, 2011
Chemo: Round Two~ Tomorrow is Friday
Thursday
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
Wednesday, July 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.
Thursday, July 7, 2011
Holes
Thursday 1:15 a.m.
Awake. Dreaming. Crying. Trying to stiffle the tears that refuse to stop.
Later today they will poke two holes in my husband and the thought of it hurts me more than I ever dreamed of.
The first one will go right in his upper chest. You know the place... The place that when your man holds you close in the twilight. The place where you lay your head. That little curved out space that you fit into so perfectly and feel so protected and loved when his arms go around you. Right there is where the first hole goes. It's called a Smart Port and he will have to carry a card to get thru security as it has a metal lead that goes under the collar bone and ends at his heart. It is there to be ready to have a place to put the Chemo and IV's when that begins next week.
I'm not sure why but I thought it would have a hole to the outside but it doesn't. It's covered by skin which they will numb each time they shoot the chemo-juice to him. The doctor tells me that the skin covering the portal will get very tough from all the needles and injections.
The second hole. It goes directly into his stomach and has two valves. Two valves.
One is for the liquified food and I'll be darned if I know what the other one is for.
No one taught me a thing. Yet. That comes next week.
Just to show you my stupidity, I truly thought I could grind up a small pizza and stick it in that tube. Ha! Not even close. Everything must be the consistency of water. What was I thinking? Sadly, I thought he would finally get a meal today. No. Not for a week or until they can teach me how and what to do.
Me. Teach me. I know about mascara and foundation. Blush and eyeshadow. I am clueless about healthcare. Clueless.
My husband is shrinking.
30 pounds of weight loss in less than 2 weeks isn't good.
I'm telling you.. Any one of us that thinks we are 10, 15 or even twenty pounds overweight. Good. It's insurance. Embrace those pounds! I used to worry and try to lose a few pounds. Not now. Let it be! I'll enjoy each chubby pound to use as a reserve.
You never know.
9:00 a.m.
My husband looks the color of fresh poured concrete. Go check out the worst looking driveway in your neighborhood and that is his color this morning. Surgery is at 10:00.
He is clammy. Dripping wet and panting. Can't breathe. Looks like he died. HOW can they cut into him when he feels this bad?
He can't eat. He can't drink. Surgery is in one hour.
I get him to the car. He looks even worse as time and miles pass by. I feel such panic.
I get him to the hospital and checked in. They begin an IV and his color comes back.
A bit.
The doctor comes in to explain the procedure.
PEG Tube. Tube down the throat with a camera attached. Poke a hole in the stomach and the two meet up and connect. The outer tube has the two valves for the food. I failed to catch what the other valve is for. sigh
The Chemo port goes in right under the shoulder and a wire lead is fed under the collar bone, under the muscle and to the heart. It is completely closed. No outer opening.
This mystifies me.
They attach leg things to massage his calves during the surgery to keep him from throwing a blood clot. (Much like the reason a passenger is encouraged to walk about the cabin on a long distance flight)
They wheel him away. My heart breaks and then sinks. I want to call him back and just go home. Forget the holes. Forget cancer. Forget this day and hide under the bed. Make this ride of horror stop and get OFF!
I am told to wait in the waiting room until the doctor will inform me how the surgery has gone.
I walk away from the surgery center with tears blurring my vision and I walk into a part of the surgical wing I'm not allowed in to. The nurse gently calls me back. I'm lost. So lost.
One foot. Breathe. Another foot. Breathe. I used to love to hear the sound of my heels clink on the marble of the courthouse as I walked the halls. Click. Click. Click.
Today my heels sound like they are taunting me as I walk. Holes. Holes Holes.
They echo and repeat. Holes. Holes. Holes.
I somehow get to the surgical waiting room. So many others are there... waiting.
I see a young girl in a tank top with her entire arm missing all the way up to the shoulder. Scars so mean-looking and red. I Do NOT want to see these things! I do NOT want to feel the pain of others. Patients with bandages on their eyes. Splints. Hurt.
I find a recliner chair far away from everyone. I want to wrap myself in a cocoon and be lost. My phone has been on silent but ringing. I begin to call all of those that love us back and it helps. Words. Comfort.
2 hours.
The doctor finds me there. All went well. I can go back to be with him in 10 minutes. He shakes my hand and tells me Henry's throat is as raw and red as hamburger but everything is fine. He now has TWO holes.
I am brought back to his suite. He is asleep and looks horrible. Dark brown Io-Prep all over him to sanitize the areas. Blood.
He wakes up as I lean in to him. He croaks out one word... "Sorry."
Sorry? For what? I never find out what he is "sorry" for.
An hour passes. He can get dressed and I can take him home. Instructions, prescriptions, pain killers.
The ugly tan curtain is pulled closed for privacy and I kneel down to help him put on his socks.
He bends forward and his eyes instantly see the feeding tube that is now a semi-permanant part of his anatomy taped to his stomach. He jerks up back into a sitting position and in the saddest voice I have ever heard he looks at me asks,
"Lana! What the Hell is THAT?"
"It's why we came here today. It's your tube." I tell him.
"Good God! That thing looks like AWFUL! Did we pay for that? What have they done?" as he winces in pain.
He hasn't yet seen the Smart Port. It's bloody and looks painful. A huge bump under the skin. I'll save that for tomorrow to remind him about.
I help him get dressed and as two crippled people, wounded, we leave and I drive him home. Sleep.
I want to take his pain and tubes and holes away and let him forget and sleep. Sleep. Escape into Sleep.
Tomorrow, he has his usual radiation treatment at 10:00 a.m.
To all of YOU. You mean so much to me. Your notes, phone calls and words of encouragement mean the world to us both. I would be even more lost without you. You own my troubled heart.
Awake. Dreaming. Crying. Trying to stiffle the tears that refuse to stop.
Later today they will poke two holes in my husband and the thought of it hurts me more than I ever dreamed of.
The first one will go right in his upper chest. You know the place... The place that when your man holds you close in the twilight. The place where you lay your head. That little curved out space that you fit into so perfectly and feel so protected and loved when his arms go around you. Right there is where the first hole goes. It's called a Smart Port and he will have to carry a card to get thru security as it has a metal lead that goes under the collar bone and ends at his heart. It is there to be ready to have a place to put the Chemo and IV's when that begins next week.
I'm not sure why but I thought it would have a hole to the outside but it doesn't. It's covered by skin which they will numb each time they shoot the chemo-juice to him. The doctor tells me that the skin covering the portal will get very tough from all the needles and injections.
The second hole. It goes directly into his stomach and has two valves. Two valves.
One is for the liquified food and I'll be darned if I know what the other one is for.
No one taught me a thing. Yet. That comes next week.
Just to show you my stupidity, I truly thought I could grind up a small pizza and stick it in that tube. Ha! Not even close. Everything must be the consistency of water. What was I thinking? Sadly, I thought he would finally get a meal today. No. Not for a week or until they can teach me how and what to do.
Me. Teach me. I know about mascara and foundation. Blush and eyeshadow. I am clueless about healthcare. Clueless.
My husband is shrinking.
30 pounds of weight loss in less than 2 weeks isn't good.
I'm telling you.. Any one of us that thinks we are 10, 15 or even twenty pounds overweight. Good. It's insurance. Embrace those pounds! I used to worry and try to lose a few pounds. Not now. Let it be! I'll enjoy each chubby pound to use as a reserve.
You never know.
9:00 a.m.
My husband looks the color of fresh poured concrete. Go check out the worst looking driveway in your neighborhood and that is his color this morning. Surgery is at 10:00.
He is clammy. Dripping wet and panting. Can't breathe. Looks like he died. HOW can they cut into him when he feels this bad?
He can't eat. He can't drink. Surgery is in one hour.
I get him to the car. He looks even worse as time and miles pass by. I feel such panic.
I get him to the hospital and checked in. They begin an IV and his color comes back.
A bit.
The doctor comes in to explain the procedure.
PEG Tube. Tube down the throat with a camera attached. Poke a hole in the stomach and the two meet up and connect. The outer tube has the two valves for the food. I failed to catch what the other valve is for. sigh
The Chemo port goes in right under the shoulder and a wire lead is fed under the collar bone, under the muscle and to the heart. It is completely closed. No outer opening.
This mystifies me.
They attach leg things to massage his calves during the surgery to keep him from throwing a blood clot. (Much like the reason a passenger is encouraged to walk about the cabin on a long distance flight)
They wheel him away. My heart breaks and then sinks. I want to call him back and just go home. Forget the holes. Forget cancer. Forget this day and hide under the bed. Make this ride of horror stop and get OFF!
I am told to wait in the waiting room until the doctor will inform me how the surgery has gone.
I walk away from the surgery center with tears blurring my vision and I walk into a part of the surgical wing I'm not allowed in to. The nurse gently calls me back. I'm lost. So lost.
One foot. Breathe. Another foot. Breathe. I used to love to hear the sound of my heels clink on the marble of the courthouse as I walked the halls. Click. Click. Click.
Today my heels sound like they are taunting me as I walk. Holes. Holes Holes.
They echo and repeat. Holes. Holes. Holes.
I somehow get to the surgical waiting room. So many others are there... waiting.
I see a young girl in a tank top with her entire arm missing all the way up to the shoulder. Scars so mean-looking and red. I Do NOT want to see these things! I do NOT want to feel the pain of others. Patients with bandages on their eyes. Splints. Hurt.
I find a recliner chair far away from everyone. I want to wrap myself in a cocoon and be lost. My phone has been on silent but ringing. I begin to call all of those that love us back and it helps. Words. Comfort.
2 hours.
The doctor finds me there. All went well. I can go back to be with him in 10 minutes. He shakes my hand and tells me Henry's throat is as raw and red as hamburger but everything is fine. He now has TWO holes.
I am brought back to his suite. He is asleep and looks horrible. Dark brown Io-Prep all over him to sanitize the areas. Blood.
He wakes up as I lean in to him. He croaks out one word... "Sorry."
Sorry? For what? I never find out what he is "sorry" for.
An hour passes. He can get dressed and I can take him home. Instructions, prescriptions, pain killers.
The ugly tan curtain is pulled closed for privacy and I kneel down to help him put on his socks.
He bends forward and his eyes instantly see the feeding tube that is now a semi-permanant part of his anatomy taped to his stomach. He jerks up back into a sitting position and in the saddest voice I have ever heard he looks at me asks,
"Lana! What the Hell is THAT?"
"It's why we came here today. It's your tube." I tell him.
"Good God! That thing looks like AWFUL! Did we pay for that? What have they done?" as he winces in pain.
He hasn't yet seen the Smart Port. It's bloody and looks painful. A huge bump under the skin. I'll save that for tomorrow to remind him about.
I help him get dressed and as two crippled people, wounded, we leave and I drive him home. Sleep.
I want to take his pain and tubes and holes away and let him forget and sleep. Sleep. Escape into Sleep.
Tomorrow, he has his usual radiation treatment at 10:00 a.m.
To all of YOU. You mean so much to me. Your notes, phone calls and words of encouragement mean the world to us both. I would be even more lost without you. You own my troubled heart.
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