Chapter 9

(Email from Paul)

Thursday, March 31, 2011 1:58 PM

This is the hood.

 

mask

 

 

 

 

(Email from me to Paul)

 

thanks for the flowers…

 

 Monday, April 4, 2011 2:53 PM

Paul,

I do not pretend to know what you’re feeling… the best way for me to know- would be for you to tell me. If you want me to listen to you rant, get angry, scream- I can do that… But I shouldn’t have to be the brunt of your anger. Deal with it…. however you want… but don’t take it out on me.

I am sorry you have cancer. I still love you. I am sorry you’re confused, hurt, angry or even scared…. those are things we can talk about- if you chose to let me in… but I can’t be the only support that you have. You should have someone else to sound off too as well as me… it’s not healthy to hold it all in.

I am not telling you how to handle your life- I am not telling you that you need to do anything different than you are- you’re entitled to handle it anyway you can or want too… but I will suggest that you find an outlet- because this is too damn early in the game to have a defeated attitude.

I am your biggest supporter- I more than anyone else in the whole world, understand how much this is effecting you… it’s not fair for you to say things like I don’t support you. It’s not fair to snap at me and it doesn’t make it all better by sending flowers. Words hurt. They can’t be taken back once they are thrown out there. Sometimes I just need to hear I am sorry from you…

When you act angry towards me- it brings out old painful hurts from years gone by… it makes me want to run. I will not abandon you through this- but I will walk away when I feel like you’re taking it out on me.

If you honestly don’t see anything wrong with the way you acted this weekend- then God help us… because there is too much left to go through… this is just the beginning! We need to stand together… be each other’s support- otherwise the cancer wins.

You have forgotten that you have a life to live… that you are not the Cancer. It doesn’t have to consume you. If you need a nap- take one- if you feel overwhelmed- then sit down and talk about it… but don’t walk around like you’ve lost your best friend.

We have to remain strong- you look like you’re giving up. Hold your head high… walk tall… you’re a winner- you have hope- and I love you. We will beat this- but only if you stop the negative thoughts and turn to a place of love. The anger and the negativity is cancer… do not let this become who you are.

Your loving wife,

Denise

Forever isn’t long enough….

 

***

Here is a side note- I want to explain a few things as I remember them.

Paul was very angry and short tempered at times. It was not him… it was his illness. It was the disease. He was so sick. He lost so much weight… was tired. He was in pain. He had huge blisters and sores in his mouth because of the radiation. He was a strong man… but the sickness beat him up pretty bad. As the closest person to him, I took most of the brunt of his anger. It happens. My hope is to let other caregivers know that it’s okay… it’s not the person you love. It’s temporary… and it’s just fear- disguised as anger. It’s not okay to be a door mat. It is okay to stand up and speak your mind. It’s okay to do it with love…Kitty taught me that this how we “own our own power”… we stand up for ourselves and we do it in love. We don’t hurt back. Hurt people hurt people. It’s not okay to scream back. It only makes things worse. Be strong. I had to bite my tongue so many times- I developed my own canker sores. It’s okay… it’s only temporary. Keep the love. Love does conquer all.

Paul learned from a fellow blogger that the disease also effects the spouses. He sent flowers after he treated me quite poorly one weekend. We called them the asshole flowers. Each time he let that side show… I would get flowers. I loved the flowers. I didn’t like the asshole.

I remember going to meetings during this time- and sharing- crying- and venting. I kept my circle small- I learned that it was easier to be real to a few people- rather than trying to balance all of the advice and energy of many.

I also got regular massage and started seeing an acupuncturist and a chiropractor on a regular basis. I needed to take care of me. It does affect the entire family. Please remember to take care of yourself.

I developed sciatica for the first time in my life. I had never had any low back problems before this time. Your body has a great way of storing the pain. I also had a “body talk” session. That helped me to store the parts of me that I couldn’t face at the moment. In hindsight… it probably saved me and my sanity.

***

 

Update 4.7.11

 

Thursday, April 7, 2011 9:03 PM

Hello Everyone,

My biggest challenge over the past few days… knowing I need to send out an update… is to find some balance in the process… it can’t be just my feelings… it has to remain about my husband… my best friend… my hero… and his healing progress in the journey.

It’s been tough… things can be a little hairy. Emotions are higher… treatments are getting more intense.

Paul came home on Friday- after four days of radiation- and two days of chemo last week. It was so great to see him… good to just be in the same room with him!

He had to start doing injections this past weekend too. The injections are Nupagin (sp?) and they are to extract white blood cells from his bone marrow- to boost his system while he is going through treatments.

If you remember- the chemo they are using may lower his white blood count… so this particular shot needed to be injected every night for five nights. The nurse told him to do it before he went to bed- because one of the side effects of the shot are flu like symptoms… and if he is sleeping- he may not even feel it. So, that’s what he did. He didn’t feel much of anything the first two nights- then Sunday night- he said he sort of felt like they described he would.

Other than that- he was not having any ill effects from the treatments. If he would have gotten sick from the chemo- it would have happened when he was home… about five days afterwards. Praise God- no sickness from chemo!

Now, that being said- there was a lot of not knowing why and what, stuff going on… He was tired… felt poorly… and we didn’t know why. They told us during the first few weeks of treatment- he may not feel any different… so we were confused. He was very deflated… spirits were low- and it scared me.

He found out when he returned to Ann Arbor that the feeding tube was infected… it happens. He kept saying he hated the stinking tube… and it hurt. Finally, on Tuesday- after sleeping most of the day on Monday- he went to get it checked out. They sent him to the ER- and it was infected.

They put him on an antibiotic for ten days- if it doesn’t feel better by Friday, he is going to have to stay in the hospital for the weekend on an IV drip. So… keep those good thoughts and prayers coming!

We all know that it’s going to get tougher… they told us more than once- that during the first few weeks- he may not notice any changes…. So this is why- at four days into treatment… we were wondering what was up? I can only imagine what it feels like to have a tube sticking out of my belly… and then for it to be irritated and infected? Infection running through my stomach… ick…

So- after two days of antibiotics- he is bouncing back. He walked a mile on the treadmill yesterday- and sent me a picture of some geese by the river today. He took a walk- watched some fisherman… and found some peace.

This morning he mentioned some mouth ulcers… he said his throat is starting to get bumps too- he said it looks like they are cooking his tonsils! I can’t even imagine… He is preparing himself for it getting worse… but also is trying to stay in the day and enjoy eating as much as he can right now. His appetite hasn’t been the greatest because of the infection…

He is okay now with posting on his wall on Facebook– so everyone go ahead and cheer him on! Last night I said- I am pretty close to just posting “cancer sucks” on your wall… he said- “Go ahead- I am ready!” So I did… All these amazing people came on board and supported him… his friends… his family… it’s like a weight was lifted.

It’s not as scary when there is light on it! God’s light! He said it feels even better than his blog site- because these are people that know him… these are people in his everyday world! 🙂 I love it!

So- yesterday I was thinking that I needed to research and be… drum roll…. Humble. It’s something that just spoke to me in the morning… so I said- Okay… I will try. The day is yours- Lord… please help me.

I looked up the word- liked the definition… then decided to try all day long to not be pushy- know it all- and to just be…. Notice how I said “try”?

Okay- so most of the day- I spent talking it through with him and then his daughter … we had it all figured out… we were going to do this and that… we were going to “help” him… get him back on track and all would be well. I pretty much obsessed about it all day… yup… had it all figured out.

Then it dawned on me… God really is in charge. God really does know what is best. Usually when I insert “my will”… things don’t go so well…. so- I prayed again.

Guess what? God really does have a plan… He took charge- when I finally let go of the ropes… things smoothed right out! No concerns- really!! There really wasn’t anything to be all fretting about anyway- he just felt icky because of the tube being infected…

So- another lesson learned… The word for today was also Humble… might have to hang on to it a few more days!

Attached is his radiation mask- it’s his blue suit! This is a hard substance that keeps him still on the table while he is getting radiation. It was molded to fit him- so it’s snug! They use the guides to line up the “laser” so to speak… then direct the radiation right at the X.

Thanks so much for your thoughts, prayers, and love! I ask everyone to please continue to lift him up… it’s pretty touchy at times… and he can use all the strength God can give him.

Peace and Love,

Denise

 

 

(This is an email from me to his Dr.… and following is her response. When I wrote the updates- I had to keep some things private. Although I alluded to the trying times… there was so much more involved. This was one of those cases… I tried to let everyone know that we were okay… let you all believe that I was being strong and full of faith… the truth was- I was scared.

His daughters and I were speaking regularly on the phone. We were trying to keep an eye on him. He was pretty sick.

I sent an email to his Dr… then heard about it later from him. Not the only time I did this… and not the only time I heard from Paul on it. He got pretty mad when I called him out on his defeated attitude or let his Dr.’s know what was really going on. I did it on several visits- and also in a couple of emails. I am not proud of this… but I did- what I felt I needed to do- in order to make sure he was going to be okay.

 

Email to his Dr.

Paul Henry

 

Friday, April 8, 2011 10:56 AM

Hello Dr. XXXX,

This is Denise Henry- my husband Paul Henry is a patient undergoing radiation treatment for tonsil cancer with you.

I have some concerns.

He seems quite depressed, his daughters and I are several hours away- so we can’t see what’s happening each day. When he came home this past weekend- he was very ornery, short tempered and tired. Sluggish would be more like it. He seems forgetful and also not quite with it…

He saw a Dr. and nurse in the ER on Tuesday- because his peg tube was infected. This is what concerns me… He said the nurse asked him if he was taking anything for pain. He said no. She said that she sees too many macho men who try to fight this treatment alone… and they really do not need to be in pain. She asked him if he had any pain meds- he said yes- she said- start taking them!

Paul has oxycodone from his shoulder injury- or from the teeth extraction… I can’t remember which… He is now taking them regularly.

Two days ago he mentioned ulcers in his throat- I asked if it hurt? He said not really… well now he says his throat hurts- and he can’t eat anything but soft foods- and he needs these meds.

When we met the first time- and we discussed his treatment- we were told everybody is different… but we were also told that the first few weeks probably nothing would change. Is he really in pain? Or is he just isolating and being depressed or not wanting to feel emotions? Is he taking the meds for pain- and are they necessary at this point?

I don’t pretend to know how he is feeling. I just see a defeated attitude- and it scares me. It’s too early in this fight for him to be deflated… He is losing weight- not drinking water… and now taking narcotic pain meds. He said the Dr. checked with you about the antibiotics and about the pain meds- and you said yes.

He sleeps about 2-6 hours a day- during the day… now if you ask him… he will tell you he has taken a few walks. (He walked on the treadmill one day for a mile- then took a walk yesterday…) I check with him daily about how he is feeling- what he is eating- and if he is drinking lots of water. The problem is- I can’t be sure.

There is no room at the hoptel- so he is staying offsite. This is his preference too… I am concerned. I want to know if there is a psychologist on his case? I also want to know if we can call a team meeting- or if you feel it is necessary? He is not meeting daily with social work dept.- because he is not staying onsite.

I can be reached by phone xxx-xxx-xxxx or by email.

Thanks so much,

Denise Henry

 

 

 

(Later the next day… Another email to his Dr.)

Paul Henry

 

04/09/11 5:48 PM

Dr. XXXX, I apologize for the dramatic email yesterday… Paul came home and although he has lost a lot of weight- he seems in good spirits. I don’t see a concern… or maybe it’s just when he is there alone? I don’t know. Please just keep an eye out for any signs of depression.

Thanks so much,

Denise Henry

 

(Email response from Dr.)

Re: Paul Henry

 

Sun, April 10, 2011 9:48:34 AM

 Dear Mrs. Henry,

Thanks for the messages. It is always good for us to know any concerns that family members have, since patients often may down play their complaints.

I am glad that he seems to be doing better. I will be seeing him on Monday. It’s very common for patients to feel depressed during this time, it usually gets worse as the treatments go on and the side effects get worse.

We will do our best to make sure that he is well taken care of. However, I sit down and talk with him once per week. If he is having issues on the other days, he will have to let us know.

XXXX, MD

(My email reply)

Re: Paul Henry

Monday, April 11, 2011 8:33 AM

Dear Dr. XXXX,

Thank you for your response back to me- he said he will meet with you today, and that he would have you look at his mouth. That seems to be the concern now- he is eating very soft foods- says his mouth hurts- his throat hurts- his teeth even ache. It’s hard for me to imagine all that he will be facing- I really do trust that he is getting the best care- and I am thankful to you and all of the staff there.

It just scared me to hear the defeated attitude for so many days in a row… could it have really just been the infection in the peg tube?

Take Care,

Denise Henry

 

 

 

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