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 michael douglas cancer. Show all posts
Showing posts with label michael douglas cancer. Show all posts
Monday, August 22, 2011
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....
Thursday, July 21, 2011
Chemo: Round Two~ Tomorrow is Friday
Thursday
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
9:30 a.m.
Today is Round Two of Chemo.
I have heard from my new found cancer friends that round One of chemo is a breeze.
No side effects. Or at least very few.
It's round Two that will kick your butt from here to Singapore and back.
We have to go to the lab for CBC blood work before radiation and then on to chemo.
A long day ahead. I hope "Debbie" isn't there today but never will I ever sit for 2 hours before an appointment again without letting our presence known even tho we had previously checked in.
Blood Lab
Lab work to see if you are strong enough to take the poison they are about to shoot into your veins like the last space shuttle mission.
Blast off!
30 minutes here and then over to the radiation clinic. My husband says he changed the name once again. It's no longer Faith, Hope and Love....
Nor is it Doom, Death and Destruction but today he calls it
Pain, Suffering and Heartache.
That one sentence made me cry silent tears as I drove him.
Buck up honey... This day is shaping up to be a hard one. As I write this in my iPad I wonder what the new downside of the day will be.
A mystery.
I used to love surprises. Not any more.
10:00 Radiaton
I see my new best friend, Chris.
He looks awful! Pale and weak.
I haven't seen him since last Friday so I gently take his hand and ask if he's doing ok. Dumb question, right?
( I've learned it's not the question that matters but the caring).
Chris's cancer is in his colon but more so his rectum. I can't imagine the position they must put him in to blast him but he told me to use my imagination..... Oh My Ouch!
He has taken the last 3 days off to heal up to brace for his last few days.
He told me the radiation to that delicate area has chewed him up and not in a good way. The radiation has also given him diarrhea. He said it hurts so bad that he cries when he uses the restroom. That part is bad but when he wipes, even gently, parts of his skin comes off in his hand. I just want to rock him and comfort him. Make it end.
But this is curing him, right? His sessions are going to end next week and his cancer is a stage I or II
which is so good for him. Again, I pray he will be ok. Chris is a young man who has a heart of gold and is a treasure. I see the pain in his face and it hurts me.
WHY do I always feel the pain of others? I don't want it.
The pain in my heart is all I can take right now but I absolutely love Chris and wish him well.
Sandy is AWOL. I can't even THINK why she hasn't been in here for days.....
I'll think about that tomorrow....
Tomorrow is Friday and I am going to make that my mantra for today.
Repeat. Tomorrow is Friday. Friday is one day before Saturday and the weekend. Weekends are a reprieve from Radiation, needles, masks, chemo, Cisplatin, and doctors. Two whole days off.
But first. First we have this day ahead of us.
Shake it off, put your head down and get thru it.
It's one more week down.....
PS. I'm just going to add this here but it has no relation to anything.
I just need to write it down :(
I am worried.
The doctors all tell us this can be treated. Treated. No one ever says CURED. I know I am not being positive right now but I'm scared. Really scared. Petrified.
One of the RN's here at the Radiation clinic asked me if I needed anything a week ago and I looked her dead in the eye and said I would like to talk to her. I am a realist. I am a survivor but I need answers. I KNOW she knows the questions I want to ask but she has been avoiding me like the plague lately.
Perhaps I don't want/need answers at all.
Let's just leave that right there. Ok.
I'll think about THAT tomorrow too....
Time to go across campus to the chemo clinic....
I have magazines (OneCentStamp sent me a subscription to Harper's Bazaar) books, my ipad, my macbook, headphones, a book that KarenKupcake sent to me and I even packed a lunch.
This time I KNOW what to expect and what needs to be done. I have my numbing cream and put it on the port spot an hour ago. No more pain from needles the size of whale hooks so he won't feel the pain of that.
This time I got the prescription filled for the anti-puke patch and the IV Emends is ordered by the oncologist.
This time, I am not going to allow anyone to drop the ball on my husband. His pain is MY pain and I REFUSE for him to be hurt anymore than is absolutely necessary.
I'm telling you, seeing someone you love hurt this way is like a physical pain. Maybe worse. When I see my skinny, sweet, sick husband wince in pain I want to do damage to someone.
The blood was drawn and will have been tested by the time we get there to see if he is healthy enough for chemo.
10:30 a.m.
It's time.
Let's Roll.
We arrive on time and whoop-dee-do we only have to wait 35 minutes to get in and we choose a lovely puke-green luxury recliner for the day. We see the same couple from NY that we met here last week. Her husband has the same cancer as Henry but when I ask what Stage it is, they don't know so call over an RN who charts it and declares to them that he is a Stage I or II
No lymph nodes involved and nothing has spread.
Lucky guy.
My husband is Stage IV High Grade 4 with lymph nodes involved. All the lymph nodes in his neck.
*sigh* I'll think about that tomorrow too.
Not now.
They apply the anti-nausea patch and hook up the IV to the port. In goes the anti-nausea drip and the steroids then the
saline flush and then Cisplatin. It's one minute per ounce for the chemo. He's at 90 ounces so 90 minutes to administer that then one more saline flush and we will be out the door.
Total time. 6 hours.
We play games, whisper to each other while holding hands and play "Unchained Melody" on my iPad which was our wedding song. It brings us both to tears but no one notices. A nurse walks by and tells us how cute we are together. We both cry silent tears as we smile inside our hearts. We have always been told that and it makes me happy.
Maybe thru all of this we still have it together?
Yes. We do.
5:00 p.m.
Home
Time to feed Franklin. He hasn't "eaten" all day. His color is once again a dull dark gray. The color of coddled cottage cheese on a hot hot day.
Henry just told me he feels like hurling. I bring a lined new trash can to sit by the bedside.
This may be a really rough evening.
Barf bags thankfully don't bother me. Blood does.
I am used to being puked on so this one I can handle.
He has a triple threat going on so hopefully, for his sake, he won't feel ill.
He has the IV Emends in his system.
He has the new puke patch on his arm.
He has anti-nausea pills to be crushed and put in the tube.
Cross your fingers... This may be a bumpy ride.
I want to write this to all of you:
Thank You again. All of your your notes, the amazing candle site started by FloridaPossum, your beautiful comments, letters of hope and love and especially just for being here.
Most all of you, I have not met but each one of you are now my family. I have never felt so much love and support from anyone as I do from each and every one of you.
I feel you everyday.
I feel you pushing us.
I feel you with us.
I feel your kindness and open hearts.
I feel your well wishes and so does Henry.
I know you are here. I know you care and what more is there? Nothing.
They say you can measure the worth of a person by their friends and how they are loved. I am so rich right now. Not with money or treasures of riches but rich with treasures of FRIENDS and that is WEALTH. I am Blessed and YOU are all my Blessing.
You have a large piece of my heart.
Now I need to go dry my eyes, blow my nose and put on some pink lipstick.
Tomorrow is Friday!
Wednesday, July 20, 2011
Faith Hope and Love?
Wednesday
10:00 a.m.
Radiation Clinic
Our wonderful Radiation clinic is called
Faith Hope & Love.
So many of you have written those sweet words to me which always brought a smile to our faces that you would use those words.
My husband has a new and improved name for the place.
Doom Death and Destruction.
He's a clown I tell ya.
Summer seems to be passing us by. Everything is now "before" he got sick or the present.
This nightmare.
I have to admit, I really liked the "before"... The After he got sick... Not so much.
Our lives have gotten a bit of a pattern. Up not so early like we did when we were fabulous.
I set out each morning and crush pills. I have gotten good at it. The best way is to put the pills on a paper napkin and take a spoon and crush the life out of them. I add them to a kiddie glass then add a bit of water which will then be put into the feeding tube.
Easy Breezy.
They gave me a lame pill crusher to use but I didn't even open it.
My way works. Vitamin B6 for energy. Valium for relaxation for the 45 minutes in radiation wearing that mask he hates so much. (We are going to use it as a pinata and bash the thing to smithereens when this is over. Ole')
Anti-puke pills, blood pressure pills. Diflucan for the thrush that is invading his mouth which is as dry as the Mojave Desert.
Next I help my husband unbandage his tube and get his cans ready and water to flush.
We've got it down to a science. I can dump that liquid food in and flush it in and out in under 20 minutes. Who needs to know how to cook anyway?
Next we get cleaned up and that involves bandage changes to Franklin the Feeding tube and I have to put Press and Seal over the anti-puke patch for a shower.
After a shower, I rebandage him up once again and then out the door for Radiation.
Fun stuff.
His throat and neck are getting more and more painful. He's 15 treatments in and 30 more to go. 9 weeks. That's almost unheard of in the radiation clinic. Nine weeks is a LOT!
This is how he describes his neck to me when I ask how it feels...
10:00 a.m.
Radiation Clinic
Our wonderful Radiation clinic is called
Faith Hope & Love.
So many of you have written those sweet words to me which always brought a smile to our faces that you would use those words.
My husband has a new and improved name for the place.
Doom Death and Destruction.
He's a clown I tell ya.
Summer seems to be passing us by. Everything is now "before" he got sick or the present.
This nightmare.
I have to admit, I really liked the "before"... The After he got sick... Not so much.
Our lives have gotten a bit of a pattern. Up not so early like we did when we were fabulous.
I set out each morning and crush pills. I have gotten good at it. The best way is to put the pills on a paper napkin and take a spoon and crush the life out of them. I add them to a kiddie glass then add a bit of water which will then be put into the feeding tube.
Easy Breezy.
They gave me a lame pill crusher to use but I didn't even open it.
My way works. Vitamin B6 for energy. Valium for relaxation for the 45 minutes in radiation wearing that mask he hates so much. (We are going to use it as a pinata and bash the thing to smithereens when this is over. Ole')
Anti-puke pills, blood pressure pills. Diflucan for the thrush that is invading his mouth which is as dry as the Mojave Desert.
Next I help my husband unbandage his tube and get his cans ready and water to flush.
We've got it down to a science. I can dump that liquid food in and flush it in and out in under 20 minutes. Who needs to know how to cook anyway?
Next we get cleaned up and that involves bandage changes to Franklin the Feeding tube and I have to put Press and Seal over the anti-puke patch for a shower.
After a shower, I rebandage him up once again and then out the door for Radiation.
Fun stuff.
His throat and neck are getting more and more painful. He's 15 treatments in and 30 more to go. 9 weeks. That's almost unheard of in the radiation clinic. Nine weeks is a LOT!
This is how he describes his neck to me when I ask how it feels...
Poor thing has gone for over 3 weeks now with NO food by mouth. Could you even imagine?
Food is my friend and to be without it would be like losing a big part of me. He just has zero appetite but he couldn't eat the real way anyway. His entire mouth throat and neck are being shredded by radiation.
I still hide when I have a meal. My new place to do so is in the car in the garage. I usually take my meal outside, leave the garage door down and eat by the dim glow of the dome light in the car. When I am feeling really perky, I sometimes turn on a CD for ambience. Fun French restaurants, appetizers and champagne seem like a lifetime ago.
It just seems so WRONG to eat in front of a person that can not or will not eat. I can't and won't do it.
Tomorrow is Chemo day.
I dug into my closet for every fabulous sweatsuit I own.
This one was too cute to pass up. I needed retail therapy anyway.
I have uploaded and downloaded books, movies, games, and his favorite music into my iPad and will hopefully have the inclination to write in my blog.
Lately, it has been hard to motivate. I feel this dark cloud of doom looming over us. It's eerie in nature. Each time I go to sit close to my husband, I get this chill that runs thru me. Remember when we were kids, we would say those "back of the spine tingles" were someone walking on our graves. The kind that start at your toes and make your whole being shiver inside? I hate them. I dread even sitting near him for that reason.
When he asks me what's wrong I have to make up some lame reason why I cringe.
Get the F off the grave whoever you are!
Tuesday, July 5, 2011
A 2nd Opinion and Some RED Lipstick
Nothing new about this Tuesday really.
Just an average day. Not.
The 4th of July Holiday weekend used to be fun and fabulous for us. We are usually busy and hectic on the 4th. Barbeque's and friends. Swimming in the pool.
Sunshine and laughter.
This one for us was sad and depressing.
Here is a note I wrote to a really dear friend this morning.
Just an average day. Not.
The 4th of July Holiday weekend used to be fun and fabulous for us. We are usually busy and hectic on the 4th. Barbeque's and friends. Swimming in the pool.
Sunshine and laughter.
This one for us was sad and depressing.
Here is a note I wrote to a really dear friend this morning.
Good Morning Beautiful &*%$^^#
This weekend was awful. TRYING to get Henry to eat something has been .... Hard.
He has lost 40 pounds since this began. Bring on that feeding tube. At least with my horrible cooking, he will never have to taste it!
Feeding tube and chemo port are Thurs. :(
Today, we meet his best friend in Indy and then go for that 2nd opinion at IU Med.
Henry is giving up. 4 days into treatment and I'm not sure if it's the cancer or the treatment but he feels like absolute crap.
All we do is look at 4 walls. We need a jumpstart! His best friends comes today.
Let's hope he can do the trick.
I pray for a miracle, Henry says he prays for a massive heart attack. Not funny, huh? We have only just begun.
God, I am so sick of my depressing self. Maybe I need to write in my blog again. It helps me to get it out and move forward. So...
Now I am going to go get beautified and wear something FABULOUS to go see a new doctor. Why not, right?
I am gong to wear a white Herve Leger skirt, my fav black Christian Louboutin's and a Chanel jacket and
YES... RED lipstick! and tell CANCER to kiss my Fabulous ASS!
Mother F*cker can just go ruin someone else's life today! Ha! I feel better already.
I love you so much
Lana
To say our fabulous fun lives have changed is an understatement. Trust me when I tell you, this could happen to anyone! An exaggeration? Nope.
None of us, you or me are immune to tragedy. Whether it be an illness or an accident, it can come to our houses and move right in. Stay awhile. Put it's dirty feet all over your home and your heart. Eat at your soul. Smell up the place and not leave. Three short weeks ago we had plans and dreams and a life. Now... Not so much.
My advice is this, plain and simple:
Don't just TELL those you love that you love them.
SHOW them! Every day.
Tuesday 10:00 a.m.
Oncology Clinic
5th Day of Radiation
My husband has zero energy. Listless. Given up.
Won't eat. His fun sense of humor is fading as fast as my bleach blond hair when Clairol comes to town.
I am almost excited about him getting this feeding tube!
(This from a girl that would only get excited by a pair of Christian Louboutin's? Ha!)
The PEG Tube and Port for Chemo are scheduled for surgery on Thursday and it will be hard but good.
The Good, The Bad, and the Ugly.
The Good... He will eat. Well, sort of eat.
The Bad....I will be cooking (yes ME who can't cook to save my soul)
I will be buying a blender and a food processor and pureeing all his food and sliding it into him via a tube installed in his stomach.
The Ugly.... My cooking is ugly and grinding it up until it's unrecognizable and looks like slime to be fed into a tube directly into his stomach will be ugly.
Can I do that? OMG. The thought scares me so bad.
I have not been sleeping at night. I wake up 20 times a night and worry.
When I was flying, I would have this recurring dream that went like this...
We would be inflight. 35,000' cruising speed. All is well.
Suddenly, the aircraft begins to shake and dip. Roll and sway. Passengers screaming. Complete chaos. I am standing in the aisle. At a complete loss. I FORGOT to do SOMETHING. I can never remember what it is I have forgotten but the aircraft is going down. Fast. I can hear the wind whistling and the thin cabin walls about to come inward from the pressure. Falling. Screaming. All these lives.
It's ALL my fault! I failed to do something. What?
I wake up in tears. I am distraught and confused. Wracking my brain to remember WHAT it is I fail so badly at.
It never comes to me. It only comes the next time I dream it.
Last night and most nights since this nightmare began...
I wake up standing in the middle of the room.
Scared and panting. Cold. Sweating. Last night I woke my husband up.
I was still asleep but talking.
I told him I had just signed his death sentence.
"What?" He says.
I repeat it. "I just signed your death sentence." Once again, I have forgotten to DO something! What? It's all my fault.
I have FAILED.
I suddenly wake up to full consciousness. I am in tears.
So afraid. Panic. I realize what idiocracy I just told my very ill husband. I am being positive? Ha! I have always lived my life so flip. I have flittered thru life without a care in the world. Much like Scarlett O'Hara, I would say
"Fiddle de dee. I'll think about that tomorrow."
Well, life isn't so easy when you love someone but can't help them. I fear I will FAIL. I fear I will Fail HIM.
I fear he will get worse and It will be ALL MY FAULT.
Ok, back to the oncology clinic. The 5th treatment goes well and once again, we are called into the doctors private office. What now? What possible news can you tell us now?
More x-rays tomorrow. They are switching gears. More radiation. Twice the power in the beams and adding one more week. We are now up to nine weeks to finish this!
Balls to the Wall. Kickstart this cancer. Be as aggressive as it is. Shrink the bastards!
The downside.... A greater chance at causing Multiple Sclerosis or paralysis. Lovely. Fiddle de dee... I'll think about that tomorrow!
2:30 p.m. IU Medical Center
2nd Opinion
We arrive with our best friend the NFL Coach.
My husband still calls him Coach. I love seeing them together. We sit in the waiting room and the Good Old Boys stories are flying. They are so cute. It's almost as if...
As if this is not really happening but we are just having a fun chat in an odd office building.
Laughing. Swearing. Being men. I almost feel as if I have entered a secret fraternity and should leave them alone. They are like college boys in their silliness and stories of past football plays and gossip of other players. It's fun!
The doctor calls us in. She has an entire NEW direction.
LESS Radiation Less chemo. What?
I want the "Balls to the Wall" approach. My husband and Coach are elated. They are almost giddy with the new plan.
I TRY to be but somehow my trust level is zero about this.
WHY let up? Why not hit it? Shrink the bastards? What happened to THAT idea?
Coach begins a pre-game speech. He pulls his hard stiff chair as close to the doctor as he can. He gets his face as close to hers as physically possible without touching her. He raises his voice like a coach before the Super Bowl.
"I am a COACH. I want YOU to be the Head Coach. I want You to get in there and WIN! Beat this! You can DO IT!
Be the HEAD Coach. Now, Let's get in there and make this happen!"
I am impressed. I am not an athlete but know I just witnessed the inside of a locker room.
Instead of sweaty football pads and mouth guards there are stethoscopes and bandages.
I literally want to stand up and scream like a cheerleader.
Go! Team! Go!
I'm not sure why but as these two "boys" leave the room so happy and charged up, patting each other on the back like they just scored a winning touchdown, I feel this sense of panic.
We have the players, the coach and the game plan. Why do I feel like we may lose the game? Why do I fear we will fail?
Fiddle De Dee.... I'll think about that tomorrow.
Friday, June 17, 2011
The "C" Word
Typing this out and even putting that word out into the stratosphere brings me to my knees. We have a name for it but what kind of cancer?
Where?
What can we do about it?
What are our options?
I know that our next step and our next one after that in this horrible journey is going to be important but WHAT do we do? Let's get started!
I am a sleeper. I can sleep thru tornados, noise, turbulence, anything. I once fell asleep at a Harlem Globetrotter's Game in Atlanta. Packed house. Embarrassed but hey, it was a great nap.
Lately, I wake up 6 -7 times a night and think "Ok, this is all a really bad dream."
Who's nightmare did we stumble into anyway? This doesn't happen to us.
We're young and fabulous. Smart and funny. We pay taxes!
My husband and I have always had a great relationship but now, we are like two tiny seahorses clinging to each other in a very big and extremely rough sea.
The CT Scans showed some ugly tumors, more than 5 on his neck. One is so large it is beginning to block the windpipe. That's why all the bloody noses and coughing up blood. (Those have all but stopped now and that fact makes me nervous)
Today, we have to go 3 counties over to get the best but also the quickest consult on a biopsy. Time is a factor now. They keep saying that but yet nothing through this has moved quickly.
I have so many questions but no one has any answers. I suppose this biopsy will tell at least part of the story and I fear it.
There are two words I do NOT want to hear.
Esophageal Cancer.
It's a sad day when you almost welcome the thought of "Throat Cancer" as it has a few options. Hey, we will take anything that has a chance to fight against.
Michael Douglas fought it and won and so can we.
I want to Thank each and every one of you for all of the wonderful heartfelt prayers and notes. Each one makes me cry and each one is a Blessing. You are all appreciated more than you know. Just the thought that you are sending messages to God above gives me hope.
PS. Take extra time for those you love. We take each other for granted. Tomorrow is promised to no one.
Where?
What can we do about it?
What are our options?
I know that our next step and our next one after that in this horrible journey is going to be important but WHAT do we do? Let's get started!
I am a sleeper. I can sleep thru tornados, noise, turbulence, anything. I once fell asleep at a Harlem Globetrotter's Game in Atlanta. Packed house. Embarrassed but hey, it was a great nap.
Lately, I wake up 6 -7 times a night and think "Ok, this is all a really bad dream."
Who's nightmare did we stumble into anyway? This doesn't happen to us.
We're young and fabulous. Smart and funny. We pay taxes!
My husband and I have always had a great relationship but now, we are like two tiny seahorses clinging to each other in a very big and extremely rough sea.
The CT Scans showed some ugly tumors, more than 5 on his neck. One is so large it is beginning to block the windpipe. That's why all the bloody noses and coughing up blood. (Those have all but stopped now and that fact makes me nervous)
Today, we have to go 3 counties over to get the best but also the quickest consult on a biopsy. Time is a factor now. They keep saying that but yet nothing through this has moved quickly.
I have so many questions but no one has any answers. I suppose this biopsy will tell at least part of the story and I fear it.
There are two words I do NOT want to hear.
Esophageal Cancer.
It's a sad day when you almost welcome the thought of "Throat Cancer" as it has a few options. Hey, we will take anything that has a chance to fight against.
Michael Douglas fought it and won and so can we.
I want to Thank each and every one of you for all of the wonderful heartfelt prayers and notes. Each one makes me cry and each one is a Blessing. You are all appreciated more than you know. Just the thought that you are sending messages to God above gives me hope.
PS. Take extra time for those you love. We take each other for granted. Tomorrow is promised to no one.
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