Chapter 10

Update 4.14.11

 

Thursday, April 14, 2011 9:31 PM

Hello All,

I started to send an update… and looked up at the subject line- and it said “cycling over melons”….

What is that? Maybe I don’t want to know… hmm…. anyway- not much to report on- but felt I should tell you what we know.

Paul met with Dr. Jolly on Monday- she told him the ulcers in his mouth are a result of the chemo- not actually from the radiation. As a result of these ulcers… he is now on soft foods and liquids. He said it’s not fun to try and cram stuff down… he also said it just plain hurts now. So his new best friends are cookies and cream muscle milk and mashed potatoes.

He found the smoothie king the other morning and drank a healthy breakfast! Loaded with over 500 calories! (That’s important because he needs to maintain- and not lose any more weight. He is down almost 12 pounds since the latter part of last month.) He met with a Dietitian yesterday too! She asked him about his food intake- seemed to feel he was on top of things… and encouraged him to keep drinking the protein shakes.

He missed an appointment with the Chemo Oncologists on Weds… so his next dose of chemo is now delayed. They require all patients to meet with the Dr.’s before they do another dose- and even though he was in the department- gave the blood sample… he wasn’t told he had that appointment. The Dr.’s are only there for appointments on Weds- so he won’t have chemo on Monday and Tuesday- it will now be Thursday and Friday. He is okay with it- because it’s a “delayed reaction” chemo- he can prolong anymore ill effects for a few more days.

We had a great weekend. He felt pretty good all weekend- of course he was little tired… couldn’t eat much… but that’s now how we gauge a good weekend anymore! It’s amazing how things change…

He will probably kill me for telling everyone this… but c’mon… you all know how hard it for me to keep a secret… 🙂 He said when he got home last Friday- He pulled in the driveway- got out of the car and pee’d in the yard… He said he immediately felt better! What is it with guys peeing in the yard? Marking their territory? “Mine!” I chuckled… I knew it would be a great weekend right then!

He took his fishing pole to Ann Arbor this week! He went to Cabellas- bought some new fishing gear- and is looking forward to his new fishing hole. I think just spending time in the fresh air… out in nature- it will be so awesome for him! He met a friend too- just fishermen… swapping stories. 🙂

Melissa is coming to visit- she will fly in tonight and come home with him tomorrow afternoon- I know he is looking forward to seeing her! (We are both looking forward to it!) She said she wanted to go to the hospital with him- see what happens- check stuff out… it will be good for him to have her there and then here! It’s a short visit… but it’s going to be good!

Thanks everyone for the continued prayers and good loving thoughts- please continue! Thanks also to the great friends who have sent cards and gas cards- We appreciate all the love and the support.

Peace and Love,

Denise & Paul

 

 

Paul Update 4.19.11

Tuesday, April 19, 2011 9:43 AM

 

Good Morning Everyone!

Paul is now into his fourth week of treatment… and tomorrow will be at the half way point! Yeah!

It’s always nice to have something to look forward too… Once again I find myself processing… and finding a comfortable path on this journey. Wow- it’s a daily process… Just for today… One day at a time… whew… it’s a good thing I have recovery in my life! Knowledge is one thing… using those tools is yet another…

I woke this morning and prayed. I have found that I am not as close to God in the past few weeks.. my choice- not his. As I laid in bed-I had an honest talk with God. I really don’t think he cares if I am laying there talking… or on my knees shivering and trying to concentrate.

I asked him to show Paul his love… to help him to feel peace and to surround him in the most purest and positive energy… I asked his protection for the family who struggles too. It’s not hard to ask God for stuff… it really isn’t hard to know what’s appropriate either… I don’t ask to win the lotto… I don’t ask for a new car or for “stuff”…. I do ask for him to show his love to the ones I care about. That to me is just another way to show my love to someone. What greater gift to give someone- than to pray for them?

Paul got a card in the mail last week from a co-workers dad… who happens to be a Shriner. He sent him a card saying that a candle is lit for the next 180 days in Paul’s honor. Now… I am not Catholic- I don’t understand it entirely … but I was so touched! Seriously… thank you all for thinking of him- in your own way… in whatever way you can! That is what I am embracing today… all of the love- all of the diversity… all of the good!

When I was done talking to God this morning…the thought came to me- How very arrogant of me to think- that I could be immune to such a thing in my life? Really? Why or how… could I possibly think that cancer couldn’t or wouldn’t affect someone in my life? Or even me? C’mon… God doesn’t create this and pick who will be affected. He knows what’s going on… and who do I really think that I am- that this would not be possible in My Life? God uses people- he uses everyday average people like Paul and I… to share hope in a painful journey.

As I type this- I am thinking of a friend of Paul’s who told him to visit the UofM children’s cancer ward… When you want to see someone who is living life with grace… look at a helpless child.

Then my thoughts come back to my own feelings lately- that helpless feeling. It’s all fun and games… until you’re faced with a challenge. It’s all fine and dandy… until your husband is diagnosed with cancer.

It’s easy to practice faith and to be loving and supportive to the world…until your very own security is threatened. I think God needs me to feel helpless in order to remain humble… bingo! It’s amazing when I ask… he delivers the answer.

I find myself in a humble spot this morning. Helpless in many ways… yet very secure that we will be okay. I am not saying that I am surrendering the fight- no way- no how… I am saying that today I have once again made peace with the fear. I have choices- there is no easy button… I need to process each day and remain thankful.

Paul’s youngest daughter Melissa came home to visit this past weekend! She was certainly a little shocked by our weather… 🙂 She has lived in Miami for the past few years… It was nice to surround him with love. To support him… right where he is at… and to allow him to feel his own way through things. Holy moly- that’s tough! I just want to help!! (aka… play God…)

He is really in great spirits- and is fighting a good fight. He is positive about his recovery. I think the hardest part is knowing it’s getting tougher… and staying positive! Seriously… who wants to be happy when they can’t flippin eat? Who wants to smile when their throat hurts 15x worse than it’s ever hurt in your life? I can’t say that I’d be happy if someone was eating popcorn in front of me! (Or a fillet mignon…)

He went to GNC and bought some great protein powder and started drinking high calorie shakes. The problem with “eating” a liquid diet… is that it’s hard to consume enough calories. And harder to get all the nutrients to sustain his diabetes… he has to have enough calories- but not too many carbs… but the good thing is his sugar levels have been amazing!

We talked about how much healthier we will eat as a couple when this is done. Small choices make a difference! I think in the interim… he will just continue to cook for me… fatten me up a bit more.. and live vicariously watching me eat! Oh yeah… fried taters… scrambled eggs… and sausage! He couldn’t eat a bite of it… but that’s what he made for Melissa and I- both days! mmm…. 🙂 I guess taking a muffin top for the team might be required- right?

We did some juicing- this past weekend- and Melissa showed me how much I love ginger! (too tangy for Paul right now… spices are all out- even salt and pepper!) A couple of times he numbed his throat with his magic mouthwash- swished for five mins… then ate something super light and fluffy. Actually- he ate better this weekend- than I have seen him eat in weeks! Creamy soups were on the menu! Love love the magic mouthwash! (Lidacaine)

He had some visitors last night- Jennifer and Alexa came to visit him at his hotel! He sent me a picture of the chubber- just to rub it in… she is so stinkin adorable- she is the smiliest child I have ever met! How precious… a nice way to calm the fire within… a child’s love!

As we enter into the next phase of treatments- I ask everyone to continue praying for us all. It’s getting harder to remain in the moment… so please send positive thoughts and love…

I have wonderful friends who help me day by day… they teach me how to stay grounded… feel God’s presence and to just be okay. It’s amazing if I listen… I hear about a lot of people who are struggling right now. Seems like everyone I speak too has something they are battling with at the moment… even the most grounded and stable people I know- are dealing with something! It’s good to know.. in some small way… that even though it feels like it’s personal… it’s not. Again- how completely arrogant for me to think… that I am more special… or any more or less loved than the next of us?

Thank you all for the cards- the gift cards- the prayers- the good thoughts- emails- phone calls… and every other little thing you have done for us all… this is a good practice for someone like me. Some of us are not good receivers…. it’s a wonderful feeling to let people in…. to feel vulnerable and to still be okay.

Peace and Love Everyone!!

Namaste,

Denise & Paul

 

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

 

 

 

Chapter 8

 

(Email from Paul)

My Blog

Monday, March 28, 2011 6:04 PM

I joined a cancer support group and you can see my blogs at blogforacure.com My name is pfhenry, and my first blog is (First treatment )

(This is an email from me- to my Reiki Master Teacher/Friend along with her response back to me)

 

Reiki

 Tue, Mar 29, 2011 at 6:12 AM,

Good Morning Benita,

Thanks for the email address change- I hope you are doing well!

I spent my first night by myself last night- as Paul had to go to Ann Arbor for some appointments yesterday and begins treatment today… Mixed feelings all the way around.

My friend told me it may be a good thing… because he needs to find his own path- he needs to make his own peace with this. I didn’t completely understand at every level… until I went to a meeting that night. I haven’t been attending many meetings lately… a guy there said something to me that made sense. He said- I have missed you being here so much Denise. I have missed talking to you and running things by you… you’re always such a presence… but what it has forced me to do is to take my stuff right to God, because you haven’t been here to talk to about it!

Bamm… Okay- thank you- now I get it.

I think the hardest thing is to see the pain in his eyes. To see his hurt- to see his helplessness. He is such a protector… such a good provider… he is a Marine… a man’s man… I say this all in jest to make my point… he is also human. I have seen more in him in the past few weeks, than I have ever seen of his insides. I love this man- and I can’t wait for him to get better so we can get on with forever…

I am sitting sipping my morning coffee- and there is still a huge pile of snow out my back door… I am sure you don’t miss this time of the year in Michigan! Paul and I are planning a trip to visit his sister in NY, when this is all done- we need a trip! I know it’s not a tranquil place…. maybe the desert would be more suiting… but that is where two of his sisters live- and I have never been… so I am excited to go. Our trip was supposed to happen last week- but things change… and I am kind of glad it will be warmer when we go!

Well- thanks for letting me ramble with my morning coffee- I think maybe I’ll try to do some quiet meditation now! Bless you- and thanks so much for your support!

Namaste,

Denise

 

Reiki

 Tuesday, March 29, 2011 10:29 AM

Dearest Denise,

Thank you for the update on your lives. I see that enlightenment, according to Chopra, has entered your life, i.e. finding the cues in the details in everyday experiences to show you the way. I can sense how scared you are and how difficult this journey is for your heart. It is one of those life events that have to resolve from the inside out, with a lot of help, both spiritually and practically, from the outside in. But the Peace has to come from within.

Read some Chopra books on healing or get his tapes. I have found them to be profoundly helpful…

As far as NYC is concerned, it is the greatest city in the world. I will go beyond that and say it’s the greatest any place in the world. I lived there for some 6 years and I long to go back and have gone back.

Each time, the first thing I do is start walking all over the city, for hours. The energy is such that it feels like if I spread my arms, I will take off in flight. New Yorkers are the friendliest people in my experience, as long as you are friendly to them. If you are rude, you sure get it back. They are fun and helpful and most interesting. When I think of the city, I always experience it as the arms of a Jewish-Italian mother. It is also the safest city to wander, but you need to know where not to go, as in any town. I’m sure your local relatives will know all that…. In the meantime, take care, ask your Angels for help and listen to their “feather touches”.

Peace and Healing be with you and Paul,

Benita

 

(Email from Paul)PFH2

 

 

 

Tuesday, March 29, 2011 4:25 PM

Lunch during chemo. What the hell, why not.

 

 

 

 

(Email from Paul)

PFH3

 

 

Wednesday, March 30, 2011 7:57 PM

My monkey Mellissa sent me.

 

 

 

Update?

Wednesday, March 30, 2011 9:55 PM

Hey all,

Paul left Monday morning for Ann Arbor and began his treatments on Tuesday.

Monday he had a follow up with the dental department, then an appointment with the ENT dept. All went well… they actually did tell him that the cancer is stage two. (News to us… we thought that this “type” didn’t have a particular stage… well- now we know.) It’s amazing what we have learned.

They hadn’t plan on Paul coming to stay at the Hoptel until Tuesday… so when he was done on Monday- they didn’t have any rooms. Tuesday after treatment- they were still full- and that deptartment was closed… so he stayed the first two nights at the Fairfield Inn… real nice place- we have stayed there a couple of times when he has had early appointments.

Today after treatments- he checked back with the hoptel and they are still full… so they sent him to a long term stay hotel. I don’t remember what the name of it is… just know they are paying for room and he is comfortable! (Quite sure it’s the American Inn… or some little chain place…)

Okay so day one of treatments began early in the chemo dept. He said they were super busy- so even though he got there plenty early- they got started late… it ended up being about a 5 1/2 hour ordeal.

He got to the radiation department and because it was his first treatment there- they had to do x-rays too… that was about 1 1/2 hours… It ended up being a long day for him. He felt good- didn’t have any side effects- and even sent us a picture of his lunch! (Praise God! Not just for the no side effects… but also for the great lunch… he was pretty excited!)

Day two was not as long for him – things rolled right along- but he did say that he felt a little tired today. I honestly think that it’s the emotional piece of it… he is really coming to grips with the reality of what he is facing.

Staying hydrated is huge… and he is drinking lots of Figi water- I sent him with a case of 24 – and he said it’s almost gone… next week- I will send two! He said they are giving him lots of meds. He feels like a walking pharmacy- one for this… one to prevent that… and it’s all working great. No nausea, no aches…. all is good and we are thankful.

Just for today…. it’s all good!

He started blogging! Yes- Mr. Private is telling his story! I am really excited for him… it’s good to see him write about what’s happening and asking questions from other cancer patients. Very informative site- anyone who wants more info- let me know… I will email you the details.

He had a nice visit with Karen today- thanks Karen! (Melissa’s boyfriend’s mom) She brought him a monkey- from his Missy! 🙂 Love love the monkey!

We are so very thankful for our friends right now. The people who have stopped at the gym- just to say hello… for the calls… the text messages that say- I don’t want anything… just want you to know I love you and am thinking of you both… the friends who have come to hang- so I am not alone… the prayers, love, great energy….

You honestly don’t know how much this has helped keep us in the moment… and to keep us grounded… even in the baby steps… we are blessed.

Love to all,

Denise

 

Update 3.31.11

Thursday, March 31, 2011 12:33 PM

Hey Everyone-

I thought of a couple of things- I hadn’t mentioned last night… and then some personal feelings from me…

First of all- Paul did not get the personal trainer- he started treatments too late. I am not sure if he is a part of the study at all- but for now… he is on his own with working out.

His Radiologist Oncologist, Dr. Jolly- spoke to him the other day and said- I am your primary Doctor through this whole process- listen to what I ask you to do… let me treat this… do not take advice from anyone else.

A couple of things come to mind… I think she is very qualified and I am thankful that she didn’t mince words and came right out and said what she wanted. I love that she is confident, assured and that she told him to basically ignore all the advice from everyone who has a second cousin who did this… and who heard that this will help.

With the internet being a huge tool of discovery- we all have become more educated and have learned a bit more about things that really aren’t in our scope. Let’s face it- we have all watched a YouTube video and now think we know all there is to know… I know I have! So basically- she wants him to communicate with her- any problems- any symptoms… because she is on top of it. She is the expert.

Last night- Paul experienced some heart burn. Woke him up at 4:00 in the morning. He said it was awful and he couldn’t go back to sleep. Normally all of us would say- hey try this… or you should get this…

If Dr. Jolly had not spoken to him in such a direct way- he may have just thought… oh- it will go away… or it’s nothing… but today- he has an expert in his corner and someone to discuss it with. I like that he has experts and Specialists!

Okay- some processing going on in my corner… I am thankful for the people who have realized this affects the whole family. It’s sort of like addiction- it affects the whole family. Recovery is a family deal… and this I know about.

So- here’s the difference… in my recovery- I have a spiritually based 12 step program. If I work the 12 steps- and am honest… follow the recipe- so to speak… then I have hope. I never have to use again. If I work the program… I get better.

I find comfort in rules. Security… If I know the rules and have boundaries… I feel safe.

The reality is that I don’t have the same assurances with Paul’s recovery.

Paul is facing his disease- knowing it is going to get worse before it gets better… he now has a group of people who will help him. His recovery now includes his blog site. Although I am grateful he has new friends to discuss this with… I am also experiencing some mixed feelings.

When I log into the blog site and read the posts from other people… I am drawn in.

It’s like a car accident that I drive by… I say- oh… I hope everyone is okay. Then I immediately look deeper… It’s human nature.

These people who post are real human beings. They are facing horrible stuff. I read the different stages… I read about all the side effects and how they lose their hair, can’t eat, lose weight, and about all the pain and medicine they have to take. I read about the tough journey… and then I read about how some of them die.

I feel their pain… I hurt with them. It’s sad… and it makes me sad… Really sad.

I can’t stop looking. It’s scary stuff… and I really don’t want to know about it… but also know I can’t live in the fairy tale world… In my mind- there is sunshine, love and pretty stuff… not pain. Not fear. So- I am torn today. How do I remain supportive and full of hope and love… and not be real? It’s going to get worse before it gets better… how do I balance the hope and the fear?

What I do know… is this. It’s okay to be confused. It’s okay to process as I go along. It’s okay… to just be okay. Love will prevail. I love my husband- I can be supportive and not buy into the fear. Today as always I have a choice- what will motivate me? Fear or Love? I choose Love.

I just talked to Paul… told him how I feel. We discussed how sometimes he doesn’t understand why my recovery works for me… and I don’t need to understand how his works for him. It’s his… and I can read his posts. I don’t have to read other people’s stories. He told me to stay out of their stuff… okay… now I have some rules again… I feel safe. 🙂

Thanks everybody for listening to me… I am okay… just needed to be real.

Love,

Denise

Chapter 7

Update 3.24.11

Thursday, March 24, 2011 2:01 PM

Hello Everyone,

Well… we now know more about chemo and are one step closer to the healing process!

Paul met with the chemo department Oncologists yesterday- discussed the different types available and they decided Cysplatin. (He has the folder today with all the important stuff- so I am going by memory here) Also- because his white blood levels are normally low- they want to do another drug along with it to boost it… I can’t remember that name. Seems like it is Nag- something…

The chemo treatment will begin on Tuesday the 29th- before the radiation. They will do it the 1st and second day- the 22nd and the 23rd day- then possibly a third time before he is all done. Chemo does not kill the cancer. It enhances the radiation treatments. It boosts the effectiveness of the radiation.

It takes about five hours for one session. They will do it through an IV- and they need to hydrate him for two hours before- then an hour for the treatment- then hydrate him for two hours afterwards. There is a room with several recliners- people were just sitting around hooked up and eating lunch, when we went by… He was excited to see that they feed you while you’re sitting there!

There are some possible side effects to chemo- this particular one can be harsh on the kidneys. The main reason is because of dehydration. He must stay hydrated- especially the days before the chemo treatments- and afterwards. The other side effects were discussed and he has to communicate any changes throughout the whole process. If they stay on top of it- then the side effects are not permanent.

Then after that three hours- and a blood draw- we strolled up to the 7th floor for the g-tube. (Feeding tube) We were about 1 1/2 hours late for the appointment- so it put everyone behind. Couldn’t help it- they take a really long time in the chemo/oncology department. (It was mentioned several times- you will always be there for a few hours… bring a book- because of the economy and what have you… it’s extremely busy!)

What I mean by putting everyone else behind is- it takes two Dr.’s to perform this procedure. One to guide the tube down his throat- and another to make the incision. It’s a long tube- with a light and a camera on it… they slid it down his throat- took pictures of the inside of his stomach- then shine the light outward. The other Dr. made the incision and then they pull the tube through. It has a plug on the one end- that’s what is in his stomach- then roll up the hose and clip it on the outside of his belly.

I don’t know about anyone else- but I thought it would be like a little nub sticking out of his belly- nope- it’s a 12+ inch tube. They showed us how to flush it- sent us with a bunch of reading material- and we were on our way. (Made a pit stop at the cafeteria for some soup- Paul was ready for something!)

We stopped in the Birch Run area- at Cracker Barrel for dinner. They warned us against anything greasy… so we thought some good ole comfort food. After dinner, Paul’s sugar crashed. Probably because of not being able to eat all day… then just a small thing of soup- who knows… so he gobbled a candy bar and we sat in the car until it passed. He was sweating and shaking- and his stomach really started hurting at this point. He took a pain pill- and we hit the road. (I drove)

The roads were fine- until we hit the Zilwaukee bridge… the wind picked up and things started to get a little sketchy… but we made it. I just kept thanking all the angels who had our backs!

This morning Paul had to flush the tube with water- and remove the bandages. He did fine… a little shaky at first- but it’s all new. I almost called Darlene – he said no- don’t bother her. (Darlene is my friend who is an RN) Anyhow- he is super sore- not sure if it’s the incision or if it’s things just moving differently… I guess we will know more in a few days.

Paul wanted to get away for the weekend- but I talked him into just staying home… there really is no place like home. He has to head back to Ann Arbor on Monday- for a dental appointment; an appointment with the ENT Dept. (Ear/Nose/Throat) Then treatment begins on Tuesday!

It seems like he just gets healed up from one thing- then has another to deal with… I admire his strength. It’s getting closer- then the healing will begin. It’s really just a bump in our road. We were talking on the way home yesterday… one of the reasons I love the trips with him is because of our talks… anyway- we were talking about getting this behind us and getting on with the rest of our lives. Our favorite saying to each other is- Forever isn’t long enough!

I am asking for more strength and extra prayers now… Now is when he needs to feel it the most. Things are going to get crazy- and the more we can surround him in love- the more he will feel okay.

Okay is a great place to be today….

Thank you to all the wonderful friends who have blessed us in so many ways. Thank you to Andrew and Jennifer for the munchies and the car… Thanks to Missy for the protein and goodies… Thanks to Helen for the gas card… Thank you to the Stella’s for the visa gift card… and thank you to Sharon for the gas money! You guys are amazing- and we feel super blessed to have the support that we do.

Until we know more….

Denise