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."
"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 28, 2011

Round 3 and Still Fighting

Not sure of the time but don't really care. 
Mid Morning lets say.

Thursdays are busy.
As usual, first stop: The Blood Lab for blood work and to check BUN, creatinine levels and white blood counts, potassium, magnesium etc.
We arrive 5 minutes late because I spent too much time applying nail polish. I actually spilled the bottle all over my pretty white bathroom.  Two months ago, I would have been livid at myself but today all I care about is being late and causing the day to be late from the start.

10 minutes to take blood from the IV Port and then off to radiation. We are now more than half way thru. They told us he doesn't have to fulfill the entire 9 weeks now and only 8. Yippee! Or... Hmmm, why is that? I'll ask that question tomorrow or perhaps never.
Henry has lost so much weight that his dreaded mask no longer fits his face and they now have an issue with it. His throat is bright red as if he has spent 6 weeks straight in the hot Gobi Dessert sun with no water, just blaring white-hot sun to the throat and neck. Absolutely zero saliva, dry mouth and earaches. No taste and raspy voice. Sores appearing inside the mouth and on his tongue. Oh Ouch. My heart breaks.
No food now for over a month. I can't imagine not eating for a day let alone an entire month!

On Mondays and Fridays, the doctor wants us to always have a visit to see how things are going. Most all of the lymph nodes involved in the neck have shrunk. You can actually see the effects from the radiation. All but one that is. One was so large it seemed to be growing and creeping up his jawline to almost the eye socket. The doctor measured it on Monday and it showed no signs of taking a quick exit like from a burning aircraft. It's exactly the same size.  All week this week the machine has been mal-functioning so it seems like they are doing over-kill on everyone. That's the rumor in the waiting room anyway.

 Radiation is over for the day so we take the short walk across campus once again for our fun stint in the puke green chairs for chemo.  Joy.

After a quick weigh in and a consult with the Nurse Practitioner we find the BUN and Magnesium levels are off but the chemo will proceed for today but most likely won't happen next week as it will instead be an infusion of Magnesium and who knows what else. 
While there, I got the brilliant idea to ask what the couple from New York asked last week to get the precise staging for this crappy evil disease we are fighting so hard against.
She gives us a quick but thorough lesson on Cancer Staging.

Here's the run down.

2002 American Joint Committee on Cancer (AJCC) TNM Staging System for the Pharynx (Including Base of Tongue,Soft Palate, and Uvula)

T1: Tumor 2 cm or less in greatest dimension
T2: Tumor more than 2 cm but not more than 4 cm in greatest dimension
T3:Tumor more than 4 cm in greatest dimension
T4a: Tumor invades the larynx, deep/extrinsic muscle of tongue, medial pterygoid, hard palate, or mandible
T4b: Tumor invades lateral pterygoid muscle, pterygoid plates, lateral nasopharynx, or skull base or encases carotid artery

Nx: Regional lymph nodes cannot be assessed
N0: No regional lymph node metastasis
N1: Metastasis in a single ipsilateral lymph node, 3 cm or less in greatest dimension
N2: Metastasis in a single ipsilateral lymph node, more than 3cm but not more than 6 cm in greatest dimension, or in multiple ipsilateral lymph nodes, none more than 6 cm in greatest dimension, or in bilateral or contralateral lymph nodes, none more than 6 cm in greatest dimension
  N2a: Metastasis in a single ipsilateral lymph node more than 3cm but not more than 6 cm in greatest dimension
  N2b: Metastasis in multiple ipsilateral lymph nodes, none more than 6 cm in greatest dimension
  N2c: Metastasis in bilateral or contralateral lymph nodes, none more than 6 cm in greatest dimension
N3: Metastasis in a lymph node more than 6 cm in greatest dimension

Stage 0: Tis N0 M0
Stage I: T1 N0 M0
Stage II: T2 N0 M0
Stage III: T3 N0 M0, T1 N1 M0, T2 N1 M0, T3 N1 M0
Stage IVa: T4a N0 M0, T4a N1 M0, T1 N2 M0, T2 N2 M0,
T3 N2 M0, T4a N2 M0
Stage IVb: T4b Any N M0, Any T N3 M0
Stage IVc: Any T Any N M1

Complicated, huh?
When I asked the Nurse Practitioner which one my husband has ... she told me the  last two that I underlined and highlighted. 
I am on my macbook now but too confused and worried to go check out the statistics etc right now. We are 3 hours in and 3.5 hours more to go.

My husband just had to ask "Ok, if next week, I am not well enough or my blood levels are not right, is it like I didn't get my homework handed in on time and it's just an automatic "F" and that's it or do I have to stay after and do a detention later to make it up?"
The nurses all laughed and said "No, you will just be one less chemo treatment. No makeup work."
That sounds well and good but with the way I worry I am concerned this crap may come back and then what?
His staging looks horrible to me, the radiation machine malfunctions and now one less chemo treatment? 

Perhaps I just over worry. I am now worrying that I worry too much. Premature wrinkles?
I'll go check out these stages and survival rates and if I don't pass out from what I discover, I will write on here soon.
Have a wonderful weekend and if I miss a few days, we are fine and probably just resting.
(I still want to escape to Pompeii) 
A Girl can Dream, right?

Wednesday, July 27, 2011

I Don't Want New Friends. Today

10:00 a.m.
Radiation Clinic

The radiation machine has been broken off and on since Monday.  My husband says he can tell a difference in how it sounds and rotates as it goes around his neck.
The line to get in for treatment is like the lines to get into DisneyWorld in July when school is out for the summer. 
I usually wait in the waiting room and chat with my new  friends that all have cancer and are waiting for their treatments while he's in there for 45 minutes to an hour getting radiated.

Chris has finished his radiation treatments and I wonder if I will ever see him again. I hope that I do, but not in here. We exchanged phone numbers but you know how those things go...
Sandy I worry about her desperately.
I did get her full name and watch the obituaries in the local newspaper for her name. 
What have I become???
Checking the death notices for my friends' names now? How macabre.
It's funny how close you can get to complete strangers in an oncology clinic waiting room and how quickly your heart can be pulled in to them. 
Their stories. Their lives. Their hopes.
Now, it's a whole new group of people and I am not so sure I even want to try.
What's the point? 

Today, I just sat and shoved my nose in my iPad and didn't even look up. I don't have the energy to be wrapped into so much sadness today. All of the sweet sad people.
This is how the conversations usually go...
"Hi. How is your day? What kind and where is your cancer?"
It's ongoing. Everyone has a sad story about how and when they were diagnosed and their symptoms. 
Oprah once said that everyone has a story that will make you cry. I believe that may be magnified in this place. Mostly the clinic is men. I'd say 7 out of 10 are men with cancer.
I beg for a cure.
Tomorrow is chemo day. :(

Thursday, July 21, 2011

Chemo: Round Two~ 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.
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?

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!

Thursday, July 14, 2011

Chemo Day

9:00 a.m.
I get "Franklin" ready to feed my husband. No clue when he will get another meal so I double him up. 2 Cans at once. 8 ounces of water before and after to flush.
All we know about today is that radiation is at 10:00 then chemo right across the street at 10:30. I am hustling this morning to get everything done to be On Time if not early, since we are back to back. Radiation then chemo.

We arrive at radiation early. Whew, Sandy, the sweet woman in white who was my angel Day One is there. Her cancer has spread to brain, esophagus and bone. I hadn't seen her for over a week and I was worried. She's here but looks rough. Not a good sign in the radiation clinic waiting room. Usually anyone that is looking bad is not tolerating chemo well. Sandy isn't on chemo since chemo does nothing for brain tumors. She disappears into the back when they call her name but before I can speak to her. Her husband looks worn and shell shocked. 
( I know that feeling well.)
Henry is called. His turn for radiation. 

I have become friends with so many patients and family members along the way so I sit by my newest BFF Chris. Chris is fighting AIDS and colon cancer but his sense of humor is addicting. We became fast  friends instantly. 
We chat about nails and hair and being FABULOUS. Chris was a performer and singer before he got sick. He now walks with a limp and has lost his hair. I love him. He has stage II cancer and only 3 more treatments to go. 
Please God let him be ok and go into remission. 
This world needs Chris. I need a happy ending.

Henry is finished and out of his 11th treatment and we zoom out the door with a merry wave and cheery 
Good-Bye to everyone in the waiting room. Most of my new friends now all have cancer.
We race to the Chemo Pavillion. We check in with "Debbie." 
(The name has been changed to protect the inept)
We get there 10 minutes early. Whew. 
Being late to me is a crime.
We check in and wait....
One hour goes by. Henry tells me he feels like he did before a Big 10 Tournament Game. Iced.
Time is ticking away. It's one of those "Hurry Up and Wait" moments.
Tick tock.
11:30 a.m.  Our names are still not called.
Tick tock.
12:00. Noon.
Tick tock.
I am not one to sit still. I get up and begin to pace.
Tick tock
12:30 p.m.
Two hours gone and we have SIX hours to get the chemo once we get in there!
It is now 12:45 p.m..
I can't take it!
I am ready to freak out. Why are we still in a waiting room? Why is this taking so LONG?
I walk the halls again. Pacing.  This time I must have had a very frustrated look on my angry red face.
A research doctor asks if I need help.
I unload and unload with a vengeance.
"We have been here for over two hours and we have six hours ahead of us of chemo!"
She goes to see Debbie at her desk where we first checked in.
"Did you check these people in,  Debbie?" She asks.
"Oh, I thought I did but must have forgotten!"

Oh, Good God. Let me at this nincompoop. 
I am like a deranged bovine with Mad Cow Disease. I want to gouge her eyeballs out with her inkpen! 
I am usually mild and calm. I told her where I thought she could spend eternity! 
I am certain the sun doesn't shine there!
Now, what was to be a 6 hour day just turned into an 8 hour day because some lame woman dropped the ball on him.
It doesnt hurt ME but to think this poor man has an 8 hour day ahead of him for no other reason than sheer stupidity makes me see red. Blood Red.
We are called in instantly.
Funny, the President of Public Relations comes to hold my husband's hand and gush big fat apologies. Casey Anthony is treated better. 
A glitch. Just a glitch.
Lets move forward from here.

We arrive in the long room where 15 - 20 reclining chairs are lined against a wall.  We get to pick out a pretty puke green recliner with a tv.
This is to be our home for the next 6-7 hours.
Someone forgot to tell us about the prescription for the numbing cream for the chemo port. Ouch. Again, someone dropped the ball. No prescript means a very large needle inserted into that port that was just inserted in his chest.

The area is barely numbed with ice and the needle stuck into that very sensitive skin. The bandages were just removed from that incision  yesterday! Ouch.
We take our $375.00 Emends to the clinic thinking it will be administered there. 
It can't go Down his throat because he can't swallow. Can't go into his feeding tube because it will clog the G-Tube... 
Again, someone dropped the ball. A man with a HUGE tumor in the back of his throat to swallow a very large pill? What to do? 
An hour goes by while they figure this out. An IV of Emend and a patch to be worn for a week. 
We bought the Emends for nothing. I give it to the clinic for someone who can't afford it or has no insurance. 
It'll go to good use.
It begins...
One hour of saline flush.
30 minutes of an IV of steroids.
30 minutes of Emends by IV drip.
The machine beeps when you are finished with each bag.

4:00 p.m.
The Cisplatin is finally administered.
2 hours of this.
If any of you ever have to experience this (I hope you don't!) I am telling you... Never wear heels or dress pants. 
I wore a white blouse, black dress pants and heels. Casual wear for a long day, right? 
No! Wear a Sweatsuit and sneakers. 
30 more minutes of saline to flush the kidneys and the rest of the body.

What a day!
We are to come back every Thursday for this for the next 8-10 weeks. Lovely.
I have a bad attitude today. It happens, right?
So exhausting and it's not me on radiation or chemo.
Next week I am wearing sweats and sneakers. It's butt-cold in here and uncomfortable as hell.
Gawwww. 6 hours in a chair is brutal. I can't imagine how Henry has done it. So exhausting and I am not on radiation or chemo.
Tomorrow is another day.

Thank you all for the beautiful notes and letters. I spent 4 of these hours reading your notes to my husband.  It helps more than you know. You may not know it but you are right here with us. Pull up an ugly green recliner and relax.

I'll Tell "Debbie" that you're here. Ha!

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.
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!

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.

Saturday, July 9, 2011

Feeding Tubes are like Dial Up Internet.

The Dreaded Tube~
Ugh. I could write a book about that freaking ugly tube. 
It's nasty. How would you like to see food disappearing down a tiny tube into a hole punched into your stomach and the damned thing just dangles there like an appendage some alien life-form stuck to you but can not be removed. I know it is life-saving but I hate and more importantly, my husband despises it!
A LinCare representative came to our house in a van marked "MEDICAL SUPPLY" and backed into our drive-way.  The young girl came in and gave me a lesson on how to feed my husband. Ha! I couldn't cook him a meal, how in the world am I going to feed him thru a tube?
It was a lot of information to absorb but you know what?
I did it!
One can yesterday at 375 calories, two cans today and 3 tomorrow until he is up to 2750 calories a day. 
7 Cans a day.
His taster has gone now. Everything tastes like plastic. His mouth has sores from the radiation. His salivary glands have completely left town.  
Dry mouth. No taste, no appetite, no fun.
The PEG Tube will be a life saver down the road. It's ugly but necessary. 
I think the hardest part of this for my husband is this:
This cancer has taken over his life. Completely.
This is a man that is President and CEO of a large successful company who has always had and been in control of everything in his life.
Now... Now he is or feels he has control of absolutely NOTHING.
He can no longer use his favorite deodorant. No mouthwash. His usual Crest Cinnamon toothpaste has been replaced by some nasty BioTene  for dry mouth. 
Say Bye-Bye to the Sonic-Care toothbrush. No more shaving. No aftershave. He is not allowed to drive and for him to have some woman... especially ME who is the world's worst driver on the planet drive him around is killing him. Now, he can no longer even eat a "Manly Meal" he has to be fed thru a hole in his stomach. It takes a toll on a man's pride.  I know it's hard for him but better to suffer a bit of pride and still be here. Can I get an Amen!

I want to share with you a note to a dear friend.

All of you have been MY support and I LOVE each and every single one of you more than you will ever know.

Dearest Donna~
I'm sorry we got cut off on Thursday. The surgeon came out and it all went well but, ugh. It's just so sad. My big, strong, healthy husband with holes and tubes and blood and being so thin.
Why did I think I could shove a full course meal down that tube? I had dreams of making lasagna, soup, even chicken and shoving that stuff down a tube. Ha! It would be like going back to Dial-up Internet. Shoving a Grilled Cheese Sandwich thru a straw for a 100 miles. 
LinCare (A Medical supply company) came yesterday and brought 2 cases of the "food" (2 cases 24 cans of canned liquid life), latex gloves, syringes, paper tape, etc. and showed me how to use it. I shudder to think about it.  It looks like crap and smells even worse. UPS will deliver these supplies to us twice a month. I used to wait for UPS to bring me Christian Louboutin's ordered from Barney's New York, wonderful makeup and skin care from Lancome or FUN packages from from far off places...
How does a girl trade parties, French restaurants, trips, flights,  shopping and luncheons, Chanel and FABULOUS for feeding tubes, syringes and bandages and blood and illness and mucus and food in a can?
I think God thought we were cruising, which we were, and put a giant speed bump in our path. NONE of those things are important, are they?
I mainly wanted to write to you and thank you for so much. For being here for me. For understanding. For being strong. For being YOU.
I finally got to the post office to check my mail there and found your beautiful gifts. I am excited to use that mask! It looks so relaxing. I am seriously thinking of having a wonderful glass of Australian wine and wearing that mask for the evening. Escaping.
Also, I have the NYX Jumbo in Milk on my eyes right now. It made me feel normal to wear it from YOU. The pink Yum lipstick is SO ME!!!
I love it! I love you.
I love everything and appreciated it more than you know. ooohhing and ahhhing over makeup gave me a sense of being ME again and I truly love you for giving me THAT! Let's see... Make up or bloody bandages. Yup. I'll take the makeup even if it's only a 5 minute reprieve.
When this is all over.... One of us is going to fly to meet for lunch. Right now, I fear even leaving the house for 30 minutes. I don't even know what it is I fear but I have this imaginary tether tied on me to him.  Think I can save a life? No. But as I told him....
I am going  to DRAG him thru this. It will NOT be pretty. In fact, it will most likely be very UGLY but drag him thru it I WILL! 
We will come out of this on the other side. Neither of us will be pretty but like a soldier dragging the warring wounded to safety, that is what I will do. We may become bloody and bruised but we WILL get thru!
I woke up this morning and came to the realization that we are turning into a very old old couple. 
George Clooney once said that "There is one year in a person's life that they age 10 years".... This, for us, is that year.
Love You Always