Chapter 17

***If you’re just joining the blog, it may be helpful for you to read the first few posts. This is a story about my walk with my husband Paul in his journey with cancer. These are the email updates from 2011 and 2012, they were used to keep everyone in the loop along the way- with some of my own emotions and thoughts sprinkled in.

Paul Update 8.8.11
Hello Everyone,
Can you say REMISSION?? 🙂 Paul got a call from the VA this morning, the Dr. he spoke to today said that the tumor is gone- there are no signs of cancer and he is in remission!

Praise GOD!
I guess the lesson here is it’s always God’s time… not Denise’s time… wow- that little tantrum was for nothing… again… 

They have scheduled the removal of his feeding tube and I can’t begin to tell you how relieved he is!

Thanks for the reminder Mel- I don’t think I made mention of Hailey and Cody’s wedding… it was absolutely beautiful… and… it was over in a minute!

The whole day was perfect- Fox Hill did a great job… the food was spectacular. The menu was so above the norm for a wedding reception… the weather was beautiful and I have no complaints about anything! (Well almost nothing… who thought it was a good idea to wear 4 1/4 inch heels?)

Here are a couple of the pictures the photographer took… They are just previews… I still get teary eyed when I look at them.

Okay I usually don’t send out an update from work… but this one couldn’t wait!
Thanks for your prayers and the good thoughts… it certainly has helped us with each step of the journey! He will still have six week check ups… but that is a piece of cake compared to what he has already been through.

Peace and Love,
Denise and Paul

Chapter 15

***If you’re just joining the blog, it may be helpful for you to read the first few posts. This is a story about my walk with my husband Paul in his journey with cancer. These are the email updates that were used to keep everyone in the loop along with some of my own emotions and thoughts.

Paul Update 6.13.11

Monday, June 13, 2011 2:18 PM

Hello Everyone!

Well- seems like time just keeps getting away- and another week has flown by… Paul is doing much better! Thank you all for your continued prayers- I have no doubt that this is why he is healing and has made such progress.
He is eating!! Not just a bite here and there- he is actually eating meals. Mostly soft foods and soups- and it’s a gamble most days if it’s going to be okay- but he is trying new stuff and making an attempt!!

He had a Dr. appointment in Ann Arbor on the 25th of May- and the Chemo Department released him from their care. They said he has no more appointments with them- unless the radiology department wants him to come back. His creatinine levels were at 2.0 on that day. He was so nervous. We sat in the waiting room for an hour before they called him back… his palms were sweating and his heart rate was very rapid. He said he just knew they were going to keep him… he even packed a bag with his meds and some clothes… because he just had a feeling… When she said that he was released from their care- he exhaled and you could just see the color rush back into his cheeks. He was so relieved…

He ran down to the radiation department and spoke to the people that had cared for him for weeks… they all said how much better he was looking. They said his color was good- he had more spunk and they felt he looked great.

Since he has been home- he has planted the garden, mowed several times, planted strawberries, read a few books, taken a few new listings- sold a new home… did a few appraisals… had a few fires in the fire pit- had tree stumps ground up and started to clean the shavings… it’s all a little bit slower- but he is doing it! He is gaining strength and feeling better each day!

He seems to be getting stronger as he can eat more too- the canned food helped to sustain him, the 2calHN- just isn’t the same as swallowing some soup. He said as soon as he started to be able to sip broth- he felt more energy. It’s odd- and here is why I say it’s a gamble.. because some days he is able to eat oatmeal or even biscuits and gravy, then the next day he can’t manage the oatmeal.

He loves homemade creamed asparagus soup and has eaten that several times. Mushroom soup is his new best friend, but can’t handle clam chowder. Some things burn, there is no rhyme or reason. He can sip tea, iced water, and even has had a couple of Corona’s.
He has stayed very hydrated- and has only had to tube feed with the 2cal once in the past week or so! Most days he can get enough with soups and other soft foods. It makes me smile… I am so glad he can eat again.

The other problem with eating though, is the teeth! He can’t really chew because most of his back teeth were taken out. He has mentioned more than once that he wants to talk to them on his next visit about getting his teeth back. Also he is ready for the feeding tube to be gone… he is over it.

His next appointment is June 22nd and the 23rd. Radiation Department on the 22nd and a Renal Specialist on the 23rd. Not sure if they will do a Pet Scan or if that will be further down the road. He thinks they will run a scope and look at things that way. He said he thinks they will wait 6 months before they do a complete check to see if they got it all. The Renal Specialist is because of havoc the chemo raised with his kidneys. This particular kind was super hard on his kidneys. (They know he has some kidney damage… just not sure how much and what the effects will be long term.) This is another reason they keep checking his blood- the Creatinine levels should be .5 – 1.5 … His have been as low as 1.8… but are currently- or at last check- 2.0. It’s not super high… but enough to warrant concern.

Okay- so that’s what’s going on in our world… day by day- (I thank God that I learned how to live day by day in recovery… it has helped a ton!) We take each day as it comes- don’t expect anything from it… love it when it all just fits together… and don’t get too upset if it seems to be a struggle. We can appreciate the good for the good… and sometimes we can even be thankful for the struggles. It’s easy to find someone who has it a little worse off… if you look hard enough.
To all of our friends who have had graduation open houses… we apologize for not being able to join in the fun.. it’s just a little too early for Paul to be around crowds. We want to ease back into life and are saving up as much energy as we can- for Hailey and Cody’s wedding! Speaking of which… I better start looking for a dress… 🙂

Love and Blessings to all,
Denise and Paul

Paul Update 6.30.11

Thursday, June 30, 2011 2:26 PM

Hello Everyone,

It’s been another busy few weeks… But I felt I had better let everyone know what’s going on with Paul! He had an appointment in Ann Arbor on the 22nd and 23rd, and got good news.

The first day it was with the ENT department and the Dr. did a scope down his nose and into his throat. She said visually… There is no tumor! She also stuck her finger towards the back of his throat and felt around by his tonsil and said she could not feel anything either! She did say his throat is still quite swollen and irritated.

His weight is still down and varies day by day… He has probably gained back five to ten pounds of the thirty that he lost. He really wanted the peg tube gone, but she talked to him about the importance of gaining more weight to help his body heal and also convinced him to continue to use it for another six weeks. He should be steadily gaining weight, but because things are so swollen and painful- it’s a soft food diet right now. It’s hard to get the full nutrition his body needs on soups and Mac and cheese. So… The feeding tube stays and he will now supplement his daily intake with at least two cans of the liquid “two cal hn” each day.

The next day we met with the Renal Specialist and he went over his blood work. His creatinine levels were 1.7. Which is still a tad bit high… and may take up to a year to level out- but they are optimistic. He said there is slight kidney damage- but they won’t know to what extent until they see him long term… things are moving in the right direction!

He is gaining strength back- daily. He is now working regularly, and most days he is done by mid afternoon to come home to take a two hour nap. He is listening to his body and doing what he can. I love that he can do things. I get excited when he starts a new project or when he adds some new plants or herbs around the yard. He is in his glory- planting and moving dirt.
We bought a pop up camper last week too- life is too short to not enjoy it! His sister had a beautiful barely used pop up… and because he is her favorite… haha… she made us a nice deal. We will be happy campers soon!

Now… if that was the end of the update- it would be pretty darn good news… but it isn’t!!

He had an appointment in Saginaw today with his normal Dr. to go over regular blood work, and an overall check up. Drum roll…… He is no longer a diabetic, no longer has high blood pressure or high cholesterol!

Because of the weight loss, he is now off all of the regular meds! He did put him on a small dose of a high blood pressure pill, just to help further protect his kidneys. (Not because he has high blood pressure anymore!!)

I am amazed at how much Paul’s journey has become a story for other people to rejoice in. I had a talk with a woman at the gym this morning- she was diagnosed with breast cancer a few months back and is going to beginning her journey with radiation soon. Just sharing his news gave her hope. She smiled and said Praise Jesus… we have an awesome God.

Gives me chills each time I can share a piece of our story and it gives someone else hope. Another member who is on this email update list… told me in the beginning that God would use us to teach others- and that he would never forsake us. She was right. Thank you- you know who you are!

So- Happy Independence Day everyone- be safe. I’ll talk to you all soon. Oh… and did I mention that Hailey’s wedding is just 8 days away? Oh ya… it’s a good life… I am so thankful to be in such a good place today!

Peace and Love,
Denise and Paul

Chapter 14

 

Paul Update 5.25.11

Wednesday, May 25, 2011 2:12 PM

Hello Everyone,

Well- It’s been one week since my husband has been home! 🙂 He is coming along nicely… it’s odd to speak of such a strong man in such meek terms… truthfully- it’s really nice to see his progress.

He is still troubled with that thick rope phlegm… but has talked to other patients with the same types of treatment- and they said it’s all part of the deal. He has also asked about starting to re-train his throat, for swallowing?

For those who are joining us late in the game… he is tube fed only right now. He is also taking all liquids in his tube too. Nothing by mouth. So- it’s a process of retraining his body to actually swallow. He tried a few sips of water the other day… and according to other patients, that’s really a good thing. Most of them didn’t try for several weeks or even months after their last radiation treatment.

As I mentioned before- the radiation will continue to work and do it’s thing for some time… so it’s all a process.

He still has the rinses and oral swishes they gave him- plus a new one especially for thrush. Thrush is what babies sometimes get … it’s common with the treatments- and they want to keep an eye on any fungus or oral issues. He will follow up in Ann Arbor on June 1st- then his big appointment, to see if the treatments were successful, is on June 22 or 23rd.

Since he has been home… he has mowed the lawn, cleaned the vehicles, planted strawberries, cleaned up leaves and twigs and burned stuff daily… I think a fire in the pit is therapeutic for him. He does what he can… then he rests. When he rests- he grabs his blanket and climbs on the couch and turns on an Encore Western- he is in his glory.

He does just a little at a time- and when he feels he has had enough, he just rests. I asked him the other day if it was driving him nuts to be at home right now? He said no… I just smiled. I honestly think he has made peace with the temporary limitations and knows when he can and can not push himself.

Because of the radiation, he no longer has to shave… He hasn’t shaved in about 5 weeks. The blisters and peeling on his neck have healed… he is diligent about putting on the aloe and other ointment they gave him.

His voice is still pretty hoarse… so he doesn’t talk much. It comes in spurts… sometimes it’s a whisper and other times it’s gravely sounding. He told Hailey the other day that he can’t wait because when he can talk again… he is going to talk my ear off! (Reminds me of what my Grandma Clara used to say to me… “Denise Ann… Your mouth runs like a whippoorwill’s ass in a windstorm”) I am thinking he will talk like that!

I am grateful that he is home. I get sad at times… It’s hard to see him struggle… It’s hard to watch and to not want to help… I know he is in good hands… God hasn’t left his side… but everyone who knows me knows- I am a good helper! 🙂 It’s not my job… I know… that’s what is hard.

He does some work from home… and has made a few small trips to check on homes… but other than that, he is pretty content to just be at home right now. He text me the other day and said he wasn’t sure how he could explain it to anyone… but he is just really glad that he is home. He never knew it would be this hard to be away. Little by little, he is getting stronger. I can see him doing a bit more daily- then I remind him- it’s just been a week.

Not much else to report- I just know everyone is wanting to know how he is doing. I thank you all for your love and support. He is doing good… and it makes me smile.

 

Peace and Love,

Denise and Paul

Chapter 13

Email from Paul

Wednesday, May 4, 2011 10:51 AM

I would call but my voice is so weak I thought I would write instead. I had a meeting and appointment this morning with the chemo oncologist this morning. They discussed with me about future treatments (chemo) and they decided that I would need no further chemo treatments, just the radiation.
They said that my throat looked good, or as good as it can right now, and that the chemo they have given me was enough. I have radiation left and I will be heading home to my family after this long journey in my life. It seems like it has been forever, and I am looking forward to being home with my wife, and to start gaining my strength back. I will still have follow ups down the road, but I can see the light at the end of the tunnel. I love you all, and can’t wait to see everyone. When my voice feels better I will call and touch base with you. I have radiation today, and then T.V. time later!!

 

 

Paul Update 5.11.12

Friday, May 6, 2011 10:15 AM

 

Hello Everyone,

After today… there are only 7 more treatments to go!! Yeah…

And… The best news ever? No more chemo! He spoke to the Dr.’s when he got back to Ann Arbor- they ran tests, hydrated him more each day, did ultrasound… then told him that they think he has had enough chemo… So he will skip his last dose. His creatinine level as of this morning was 1.9!
Last treatment is May 17th… (Happy Birthday Doni)

We certainly don’t know what to expect as we near the end of his treatments- as far as recovery time… when he will gain his strength back… when he will be able to eat again… those things we can handle as they come… but we are very grateful for the encouraging news from the Dr.’s. They told him everything looks good- is right on track… and his levels are back down… Here’s hoping and praying for a relaxing weekend at home… 🙂
Thank you everyone for continued prayers, love and support! Can you tell I am excited it’s Friday??
Happy Mother’s Day to all the moms- have a blessed weekend!

Denise and Paul

 

Paul Update 5.16.11
Monday, May 16, 2011 1:48 PM

Hello everyone,
I am really glad this part of the journey is almost over! After today- he has ONE MORE treatment! Yeah!!!
Paul had a very trying weekend… he came home on Friday and slept on the couch until I took him back to Ann Arbor on Sunday morning. He had either a slight cold- or seasonal allergies that created lots of phlegm and made it difficult for him to breath, swallow and just plain be comfortable. He dozed- sitting straight up- for two days. His throat hurt something fierce… so he was medicated to try and relieve that part- then he couldn’t get comfy with the congestion… so it was miserable.
Finally on Sunday morning- he wrote me a note… mind you- he’d said about ten words the whole weekend. (Not real communicative when he doesn’t feel good…) And said- he wanted to go back to Ann Arbor to get some relief. He was hoping they would give him a breathing treatment or something to break up the mucus. I told him I’d take him- and called Hailey to drive the car and meet us down there later in the day.
He packed up his meds- and away we went. (He hadn’t even unpacked his car from the previous week’s trip.) When we got there- they looked things over- took his temp and blood pressure and said it was drainage. Because his throat is so raw and swollen- he is unable to process the excess phlegm… so he either chokes on it… or he hacks it up. After several days of doing this… it’s tainted with blood… and he feels even more raw.

They gave him some nasal spray- and I took him to the hotel. He took another nap- and I waited for Hailey to come with the car…. We got home around 10:30 last night.

Thank You Hailey!! She is such a trooper… she even drove part of the way… Although I have to say- I wasn’t a very good co-pilot for her… We missed our exit… twice! 🙂 Good thing we weren’t in a race… because she sailed right past US 10… and I realized it about five minutes later… then when we got down to two lanes on Us 10… I realized we had missed M-115! I take total responsibility for it… she was gracious enough to drive… so I should’ve been paying attention!

Okay… so that all being said- here’s where my head is today. I am over it. I have had enough. I honestly don’t know how people can do this for months and years… oh my goodness… I can’t even imagine what he is feeling.

I can’t imagine how flippin upset he must be about not feeling well… it has went from no symptoms or pain… to injecting poison into his body and watching the effects… then cooking him until his neck is so red it’s peeling and blistering… he is hacking up blood and can’t rest laying down. Enough!
I am sooo glad it’s almost done. I need him home- so I can help him heal. He has had enough. I have had enough. It seems like each and every time he has a little relief- he suffers a relapse of sorts.

It’s been a long ordeal- and I am soooooooo ready for it to be done. I just want my husband back. Not the ornery man sitting on the couch and not talking to me… I want my husband back.

Even as I write this… I tear up… it’s okay… a good cry is good for one’s soul. I am tired of being tough… I don’t want to mess with smelly things under the kitchen sink… I want my husband back! I want to look out into the back yard and see him with a rake in his hand… I want to see him planting his garden… it’s time. Let the healing begin. He has had enough God… it’s time to let him heal now. I know it’s pretty sad that I think I can talk to God like that- right? But until you walk in it… you just never know what emotions will come up.

It sure has been a learning experience. Boy oh boy… I am more in love with this man today- than I ever thought was possible. He is such a strong man. He is my Marine…and it’s time for him to come home and get better. No more poking and prodding… no more IV’s… No more poison. It’s all about the love now people… let’s show him love.
I thank you all for taking this journey with me… with us… and I thank you all from the bottom of my heart for your love, support, prayers and good thoughts! We couldn’t have done it without all of you.
Bless you all… Peace and Love…

Denise and Paul

Chapter 12

Email to Paul’s Dr

Subject: Paul Henry

Sunday, May 1, 2011 10:40 AM

Hello Dr. Jolly,

Paul is in the Saginaw VA hospital. He is being treated for dehydration and his creatinine levels have been too high. They were 3.5 then 3.4 and are now 2.8. The Dr. wants to keep him here and for him to see a kidney specialist later in the week. They said they will transport him by ambulance to Ann Arbor and then back here to see the other Dr. tomorrow. I honestly would feel better if he was there. Do not know how to reach you or anyone else on his team there. Here are our phone numbers XXX-XXX-XXXX is my cell and XXX-XXX-XXXX is Paul’s number.

He has been here since Friday afternoon.
Thanks so much,
Denise Henry

 

 

Update 5.2.11

Monday, May 2, 2011 3:17 PM

Hello Everyone,

What a crazy weekend… oh boy…

Our weekend started on Thursday because the radiation machine was being moved on Friday- so no treatment on Friday. They ordered blood work- because of chemo treatments on Monday and Tuesday… for Friday. He decided to drive home Thursday- and just go to Saginaw on Friday for blood work. (Otherwise- he would’ve had to stay another night in Ann Arbor.)

On Friday morning- he hit the road early- went to Saginaw and had his blood work done. He then came home- drove to Lake City- looked at a house… took some pictures and the hospital called. They wanted him to come back to Saginaw- ASAP- because something wasn’t right with his blood work. They said he was dehydrated and they were concerned about his kidneys. He called me at work- so I left early and off we went to Saginaw. (He packed a bag- not knowing if they would keep him or not… I just grabbed my makeup bag.)

We got to the Saginaw VA hospital around 5:30. They immediately did a blood draw- hoping… that it was lab error… and started an IV. The test results came back- and they were the same. His creatinine levels were at 3.5- and normal is .8 – 1.8 range.

They decided to admit him- and the Dr. explained that he just needed to get hydrated- and that he was going to do a full admit- so they wouldn’t have to admit him again the next day… if the levels weren’t right then.
This was now around 8:30 or so… the nurse in the ER gave me information on the hospitality house- and I also contacted a cousin on Facebook. She in turn- called her sister and dad – who both live in Saginaw. The hospitality house was full…

I ran outside to lock Paul’s meds in the car- and left my purse and phone in the car. They finally got him moved and into a room upstairs around 10:00. One of the nurses made a phone call to a hotel around the corner… and they had one room left. I had to run back to the car- grab my phone and purse… and by the time I called- there was no answer.

At this point… I am getting nervous… it’s 10:15pm. As I was trying to reach the hotel… there were two messages on my phone. One from my Uncle Lawrence and one from his daughter, my cousin, Ellen. She said- call no matter what time- if you need anything or a place to stay… she even offered to come get me.

I called Ellen. She drove to the hospital- picked me up and brought me back in the morning. (Thank God for people who are willing to step in and help when you just don’t know what to do?) The nurses were scaring me… don’t drive here- don’t go this direction… stay out of this part of town… I guess- two blocks in the opposite direction from the hospital- it’s not a safe neighborhood. It’s not somewhere to drive during the day… let alone at night especially when you don’t know where you’re going!

Ellen and Pete have a place about ten minutes from the hospital- after breakfast on Saturday- they took me back.
By the time I had got there- they had already done his blood work and the results were back… his creatinine level was 3.4.
The Dr. said he would check it again later that night- and maybe he could go home then. I just hung out with Paul… pretended to have a slug day in the hospital… I gave him a back massage… rubbed his feet… and when he started getting tired- I told him I wanted to go buy a clean t-shirt and some clean undies… I had showered at Ellen’s… but still wanted to grab a bite to eat… and some clean clothes.
When I got back… no blood work… and the computers were down from 3:00pm-12am. I played on my iPad… read on my kindle… and just hung out while he watched TV.

My Uncle Lawrence came to visit- and kept us both company for a few hours… it was nice to see him and very nice of him to take the time to visit.

I finally talked to the nurses around 7ish… they said- no- he’s not going anywhere…

Remember back now to the discussion with the ER Dr… He did a full admit… now everyone thinks he is supposed to be there- under their care… for the weekend! ugh…. I asked about the blood work that was supposed to be done that evening… nope… No order with the computer system down. Ugh…

So- back I go to Ellen and Pete’s couch…
Sunday morning- they did more blood work. His creatinine levels are now at 2.8- but the Dr. spoke to Paul and told him he wouldn’t release him. He said he was going to keep him another night… He told him that he might even ship him by ambulance to Ann Arbor. WHAT?

Okay- so now it’s after noon… the Dr. called while I was sitting there and I picked up the phone. He started to tell me that he was concerned about Paul’s kidneys and that he needed to see a specialist on Monday. He said he’d rather ship him by ambulance to Ann Arbor while he was still admitted… If he released him, they would have to do another admit once he got to Ann Arbor… and it’s just easier if he stays in the system. (hugh??)

I told the Dr. that I did not want him to be shipped back and forth- his primary care is now in Ann Arbor and that is where he would go to see a specialist. I reminded him that Ann Arbor is the one who ordered the blood work originally- they know what’s going on… this is a result of his chemo… and that he has a team of Doctors there.

I asked if anyone had communicated anything to the Dr.’s in Ann Arbor? And I told him I would feel much better if he was there! He said he’d have to make a few calls… to see if that would be possible.

At this point- I started emailing and calling Dr. Jolly. I didn’t think she knew what was going on… I felt like he had been lost in the shuffle.

I went down the hall- and to the nurses’ station. I spoke to the head nurse… he said that the Dr. was just covering his butt. Bottom line… there is one Dr. on weekends for the entire hospital and he floats between the floors. (It’s a small operation…) Anyway… because he doesn’t want to be responsible- he would just keep him there… so nothing could happen to him. I told the nurses- all of them- he didn’t want to stay there.

I felt like he had slipped between the cracks… and nobody knew what to do. They would knew what to do in Ann Arbor… and that’s where we wanted him to go!

That nurse said to me… if it was me… and the Dr. didn’t release him… sign him out and just take him. (He also said he would deny it if anyone asked him later…) He said he was talking to the Dr. and told him we were on top of things… and would follow up in Ann Arbor tomorrow. He told me that he would have an answer- one way or the other… in just a few minutes.

Fifteen minutes later- the nurse came in and said you’re free to go. What? Yup- you can go… so we did.

As we were walking out of the hospital… I told Paul- this is the only time in my life- that I had seen someone walk out of a hospital. His room was on the third floor- he just got dressed and we carried his bags out- and left!

As we were pulling out- I told Paul that that whole thing felt weird. He said- I think I’d still be there if you didn’t break me out of there… we laughed. Seriously… that’s exactly what it felt like… it felt like he was escaping!
Got him home- he kept hydrating himself… slept a lot and then got up this morning and headed to Ann Arbor for his radiation treatment. He left early enough to check in with his Dr.- so she could know what was going on… and see if he needed more blood work and to talk about a kidney specialist.

Dr. Jolly called me- and I explained what had happened… and that Paul was on his way there. She said unfortunately- this sort of thing happens… and that now that he was on his way back there- she would see to it that he was back on track. She said they could possibly admit him- if his blood work still showed his creatinine levels were too high… she would talk to him once he got there.

Since then- Paul has had his treatment- and scheduled an appointment with the kidney specialists for next Monday and blood work for today. I feel so much better now that he is back in Ann Arbor… Ohmygoodness!

I have spoken several times about how things come in waves. How the serenity is usually there… haha… when things are going good… and even sometimes during the midst of the not so good… but when it’s all over… I take a big breath and want to cry… and I usually do.

I am crying “uncle”… enough is enough. I would like for the rest of his treatments to be uneventful… and for him to just get through this and just be home again. It just plain sucks to see him in a hospital bed… when it’s so nice outside. He wanted to plant his strawberry plants… He wanted to get some grass seed going… If you all knew how much of an outdoors man he was… it’s not fair. (As I am sliding back so quickly… I breathe and am okay again.) I have no blame. I have no ill feelings… it’s just overwhelming and I want it to be done.

I don’t even pretend to know the answers. I can’t possibly know the why and it would drive me crazy to even go there… People say things like- God only gives you as much as you can handle… I am honored he thinks we are this strong… really… but enough already.

I think it’s time for some quiet time for me… maybe a little yoga in the morning… get things back on track… get re-centered and balanced. That is some draining stuff!

Thanks sooooo very much to Uncle Lawrence, cousins Laura and Ellie and Pete for your hospitality and for your ear. I am grateful for such a loving and supportive family and all my friends, who have helped with the prayers all weekend. As we are walking through it- it doesn’t seem like it’s much… seriously… you do what you gotta do- and you get it done. Then when it’s done… you realize how much of a toll it’s taken on you…

Bless you all- and thanks again from the bottom of our hearts…
Peace and Love,
Denise and Paul

 

 

Email from Paul
Subject: Us
Tuesday, May 3, 2011 2:51 PM

Wow! What a week it has been! I would just like to thank my wife for her courage and for being there for me at all times. She is truly a saint to me and I don’t know what I would have done without her through all of this.

She has been through as much hell as I have and for those who have never been through anything like this, believe me it is hard on your spouse.

She has remained strong for me, and I’m sure at times she has cried as I have. She is the strongest person I have ever met, and I will forever be grateful for all of her courage and caring that she has given me. I know God has a plan for Denise and I, and we will fulfill that throughout our lives together.

I just wanted everyone to know that it is just as hard on her as it has been for me. I have ten more treatments left which ends on May 17th, and we can start to rebuild our lives once again. I have so many people to thank for their prayers, the thoughts, and just being here for us.

We love you all and God Bless everyone. To my wife; I LOVE YOU HONEY, AND THANK YOU!! Going to get a nap in. Finally!!
Paul

Chapter 11

Email from Paul
Tuesday, April 19, 2011 8:01 PM

Hi honey.

Just wanted you to know that I miss you and love you very much. Being here is really tough without you. I look forward to the day I can come home and start a normal life again. May 17th is now my last day, as they canceled my appointment today and will add it on to the end. (bummer)

It’s not as tough as it was when I first came here, but still would rather be home with you. Life takes you in strange paths, and I don’t have an answer why, and really don’t look for one.

I remember when I first left for the Marine Corps, I spent 3 years of my life away from family and friends. It was tough, but then you get used to it because you have no other choice. You do what you have to do in life. I was younger then and I also wasn’t married at the time, so it’s different this time.

Time is going by quick for me so far, and thank god that I come home on weekends, or it would be even tougher. I don’t know how this is going to change my life exactly, but I do know that it will give me more respect for people that have to go through this. I’m sure there are people that go through it alone, and I sure wouldn’t want to be in there shoes. I know I am going to make something out of this experience in the future, whether it is talking to people about cancer, or just supporting people that are getting ready to go through it.

Lots of thoughts! I do know that I am glad that I have you to fall back on, and to know that you are there for me. The kids also have given me so much support on a daily basis, and I will always be so thankful for that. Alexa has no idea what it feels like to just see her, and watch the little smile on her face. What a blessing God planned to have her around for all of this. Someday I will tell her what it meant for her to visit me. Well I am going to sign off for now, and again thank you honey.
I LOVE YOU
Paul

Email from Paul
Monday, April 25, 2011 4:03 PM

Filed a complaint on that Doctor that treated me like shit last week. A patient advocate got ahold of me and asked me about it today and I told her the story.

She said that it should have never taken place and that they will look into this with his supervisor. She also said a board will be asking him questions about it. I also told them that I have a follow up appointment with him next week, and that refuse to see someone that treats people like he treated me. She that I have that right and they are going to have me see someone else. This guy has deeper problems and is bringing it to work in my opinion, and I hope they do something about him. Maybe he will think next time before he opens his mouth to the next patient.
Love you,

Paul

 

 

Update 4.25.11

Monday, April 25, 2011 11:18 PM

Hello Everyone!
Hope everyone had a wonderful Easter!
Lots happened last week- here is a shortened version…
On Tuesday- the radiation machine was down…so no radiation on Tuesday… Not sure what to think about the radiation machine on the blink… hello? Seriously? Paul said he told them he didn’t want to be the first one back in once it got fixed!

Then on Weds, Paul met with a Chemo Oncologist and talked about many things. (Tongue in cheek… seriously- this is the first time he had anyone be anything other than super duper nice!) Long story short… the Dr. was inappropriate and Paul didn’t appreciate it. The best part of that day? He now has some amazing drinks that have all the calories and nutrients his body needs. So- no more struggling with meals- no more muscle milk… and he is now using his feeding tube for the drinks.

We talked at length about it- and what a relief it must be to not have to manage food. No worry about spices, no worry about hot or cold or enough calories or protein or anything! He can get everything he needs now… and they supply them all. I wonder why the dietitian from last week never mentioned these? Oh well… things are under control now. They are called 2 Cal drinks. Paul said there are about 32 vitamins and minerals in each can- and they are about 500 calories each. (He is drinking 6-7 a day!)

After the “not so nice” Dr… he met with Dr. Jolly. She confirmed several things for him. First of all- the cancer is viral related. The second is that the VA will fix his teeth when he is all done and in remission! 🙂

She asked him if he was comfortable with the molars gone… he said- no- he was planning to do something about that when he was done. She said- we took them out- and we’ll fix them too!
She also said they were treating the cancer with a very strong dose of chemo- and possibly it was too much. She said they were thinking of either switching it- or giving less of a dose. At one point when they were discussing his weight loss- and the new drinks… she said maybe they needed to increase his calories too. She said maybe he had a real fast metabolism- and that he needed more than the 1500 calories a day… so he was immediately bumped up to 3000 a day!
Because of the missed the radiation appointment on Tuesday- he either needed to make it up at the end… or he needed to make it up on Saturday. He chose Saturday.

Also- his white blood count was too low- so no chemo on Thursday or Friday. They took more blood on Friday – and scheduled a chemo session for today. He needed to be back down there early for more blood work and a possible chemo session. (Depending on how his blood count was) His blood work was good- and he has already gained back two of the lost 12 pounds! So- they did do chemo today… and another dose is scheduled for tomorrow morning too. (They chose a milder dose of the same kind.)

With radiation on Saturday morning- and a 7:30am appointment today… he decided to not drive all the way home for the weekend- instead- he decided to drive to Jennifer and Andrew’s house in Kalamazoo. (Mattawan) It’s just 1.5 hours from Ann Arbor- vs.three hours home.

During the week- I started to sniffle… I had some dry coughing and drainage…. wasn’t sure if it was allergies- or if I really was getting a cold. I didn’t want to be around him if it was a cold… so I made arrangements to stay in Portgage with my friend Stephanie. I got a few masks from a friend and decided to just go and visit and we’d both mask up.

As it was- it wasn’t a cold… or if it was- it surely responded well to allergy meds and dried right up! I spent a few hours with him on Saturday- and then drove back and spent the night with Steph. (She by the way is the hostest with the mostest! Love Love you Steph!) Then I got up on Sunday morning and drove back to spend the day with him.

We had a nice Easter. What a gorgeous day! Spent time just hanging out. It was weird- but our circumstances certainly aren’t normal right now… Normally Easter revolves around a family meal… a big dinner at my moms house… church… food, family… with lots of kids around… this one was just us hanging out… Until Alexa got home! 🙂 Then it was all her! I can’t even begin to tell you how much she makes him smile. She is such a happy baby! She is her Bampa’s love… that is the healing love he needs!

I am extremely grateful for such awesome family and friends. Thanks to Jennifer and Andrew for allowing us to barge right into your Easter weekend… and make us feel like it was nothing… Thanks Stephanie for taking me to the best Indian restaurant- Ever! And thank you to Andrew’s mom and step father (Nancy and Greg) who gave him a funny card and a visa gift card- Thanks to everyone else for the cards, well wishes, prayers and good thoughts! Keep those prayers and thoughts coming… with Chemo this week- I am sure he may need some extra support this weekend!

I am also thankful that we have the VA for Paul’s treatments. I can’t even imagine how things would be for us if they weren’t in the picture.
If I am forgot anything… I will continue tomorrow… It’s late and my pillow is calling me…

Night all- Love to you and yours!

Peace and Love,
Denise and 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