Chapter 18

***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.

August 2011

The emails and updates ended here… it was a beautiful summer. We babysat Bogey, while Hailey and Cody were on their honeymoon. Life just seemed to go on. It was good. Paul got stronger and we even took a couple of trips.

We went to NY and had a great time! I had never been before, and because two of his sisters live there- it was foolish to not go!

We saw every part of the city, his sisters were great hosts and superb tour guides. We took some amazing pictures to document every step and when Hurricane Irene made her way up the East Coast- our flight home was cancelled. We spent another two days in NY and another full day in the city.  We even spent our second anniversary in Manhattan at a wonderful little restaurant with Rebecca, Paul’s sister. He still had his feeding tube, and meals weren’t always easy… but we made the best of it and talked about when we could return.

Then in March- we took a small vacation and went to Las Vegas. We stayed right on the strip and rented a car to go see the Hoover Dam. Paul was in his glory. He had always watched documentaries on the construction of the dam, he was fascinated with the entire process. It was a nice trip- a great way to break up the long winter… we flew out the day after our biggest winter storm. It was nice to leave a few feet of snow and spend some time in the desert. There were a couple of great points to the trip… and it makes me smile thinking back.

Here’s Paul- who by the way- dressed himself and packed his own clothes! People were laughing at us all day… You know they were thinking that I must have dressed him.

hoover dam

 

We had tickets to “The Blue Man Group”, and picked up our tickets at the will call booth. (This became an important piece… keep reading.) We found our seats and settled in… for those we have not ever been to the show- they have a scrolling marquee with announcements. It was repeating things like- No videotaping of the show. No flash… Do not get out of your seats during the performance. Just before the show was about to begin, the scrolling changed to wish a member of the audience a Happy Birthday. “Please join us in wishing _____ a Happy Birthday. _______ Please stand. Read this out loud. Happy Birthday to you… Happy Birthday to you… But- please do not sing.” (The person stood and we all clapped) Then it changed. “Please help us welcome _____ who was a member of the USA Olympics team. (The person again, stood up- we all applauded.) Read this out loud… Welcome ______.” Then it said something else about a famous author or something like that… and then… “Please join us in welcoming Paul Henry.” “Paul, Please stand… Say- Welcome Paul… Paul is just an ordinary guy- nothing special… Just an ordinary guy… okay Paul- you can sit down now.” Can you believe it?  It was the absolute best… It was his two minutes of fame…. We laughed for days. (We think they picked his name from will call.)

What a great summer… we camped with the kids one weekend… spent a lot of time with each other.

Then in October, we learned that Jennifer, Paul’s oldest daughter was expecting another baby. He was elated… Alexa was the apple of his eye and he couldn’t wait to have another grandbaby.

His appetite came back, but he still couldn’t eat everything that he wanted. His saliva glands weren’t working and he didn’t have his back teeth which made things real difficult. He ate what he could… and in his eyes- it was anything covered in gravy. Anything smothered or dripping in gravy was his friend.

Winter came and things just settled into a routine. Christmas flew by and everyone came home for the Holidays…

Mellissa moved back to Michigan… and was looking for a job. We even got to watch one of Cody’s Hockey games… not much else- just enjoying life. We had everything we needed. We were so content with each other… working hard- staying busy and enjoying being cancer free.

It was an emotional journey… I am glad we had a few months to re-coupe and gather our strength.

 

Part Two:

 

Update 4.23.12 Paul is in Ann Arbor

 

Hello All,

 

I am writing this email to ask for love and support. Paul is in Ann Arbor in MICU. (Medical ICU) He was brought here yesterday by ambulance from Cadillac Mercy ER.

At this point, we are on auto pilot. God give us strength…

I took him to the ER, because I thought he was having a stroke. They immediately did a cat scan and then an MRI. When they looked at the images and told us the results, I asked that he be transferred to Ann Arbor.

They have done many tests, another MRI and are giving him steroids and anti-seizure meds.

We are waiting for another pet scan and then they will fit him for full head mask.

I am not going to give this energy. I am not going to be in denial- but am not willing to allow cancer to win. They feel it may have metastasized to his brain. He has many lesions and once they do the petscan- they will know more. Not sure of the source. Not sure of kind. It will matter how they treat this… but at this point… it’s going to be radiation…. possibly chemotherapy. We will cross that bridge when we get there.

I am asking everyone- to pray. Keep us covered in prayer. He needs strength. His girls need strength. I need strength. Please don’t respond back with questions. I am doing my best to keep up with all the texts- phone calls and such… this is my way of updating everyone. Just send support… love… and prayers.

***

Side note…

This was the scariest day of my life… it all seems like a dream now. I got up on the 22nd of April and made us breakfast. We were both fighting a cold, and he was really sluggish. He had also gotten up in the middle of the night a few nights before and fell to his knees. I honestly thought he was overmedicated or taking the night time meds during the day… Or that he had an inner ear infection. I even did an MD search for the symptoms to see if it was serious.

I asked him to tell me what was wrong. I kept asking him to explain what he was feeling. For anyone who knew my husband- you all know how stubborn he is- if he doesn’t want to talk- he just won’t talk. No explanation needed. But this was different. He would look straight through me. His eyes were so distant. He got up to use the bathroom and didn’t quite make it. It didn’t seem to bother him either… he just sat back down on the couch with his wet underwear and t shirt. (This was a bigger clue than any other.) I got him some clean clothes and had to help him to get dressed. He wasn’t moving his left arm really good either… that was another thing that scared me.

I added his new symptoms to the MD app search and told him if he didn’t eat something- that I was going to take him to the emergency room. He said okay. I started texting my friend Darlene. (She is the RN) She said it would be best to bring him to the ER to get checked out.

I put down my breakfast and got dressed. I got him dressed and started my car. On the way into town- I asked… do you want to go to Saginaw, Ann Arbor or Mercy? He shook his head, nodded and said Cadillac.

My heart was beating double time… I couldn’t begin to imagine what was wrong. I needed to call the girls. I told them that I was on my way to the ER and I would update them when I knew more.

I pulled up to the emergency entrance and blew my horn hit the button and asked for help. The nurses came out and helped Paul into a wheel chair. They asked about symptoms and medications and went into action. I moved the car and went in through the regular ER entrance. I had to give his medical coverage information, birthdate etc…

This part is a blur… I must’ve called his sisters and mine too… because his sister Laura and her husband Jerry were there… and my sisters Cindy and Kim were in the waiting room… Hailey drove up from Big Rapids and Darlene was there too. The Dr. took me aside and told me they were doing a cat scan and an MRI. He said the results would be back as soon as someone could interpret them. I don’t know how much time had passed.

They put Paul on steroids and started and IV. I asked them to start the IV because of dehydration and the damage to his kidneys from the chemo and radiation. I reminded them he was no longer taking diabetes medication… Paul had visited the ER the year before because of fall on the ice. They had his records and wanted to make sure he was still taking the same meds…

The results came back and showed at least seven lesions in his brain. This is where I checked out. I went into auto pilot. I made the calls, arranged for his transport to Ann Arbor and started to try to reach his Dr. in Ann Arbor who handled his radiation. I called and emailed several times. The transfer was not automatic. They had to make sure that the VA would accept him in Ann Arbor. They needed to make sure they had a bed for him. They also needed to approve the ambulance transfer.

Jennifer was updating Mellissa and I was giving her information. Should she drive up? Should she be concerned? Should she make arrangements to go to Ann Arbor? (Jennifer was very pregnant at the time and was concerned about the stress and traveling.)

Now when I look back- I know that everyone else understood how sick he was. I didn’t. I thought the lesions meant something else… didn’t begin to put it together as his brain was filled with cancerous tumors. At one point the ER Dr. mentioned that the lesions may be a result of the recent chemo and radiation treatments. Okay? I didn’t know any different… I just knew that things were serious.

Here’s another side note… to this side note. The few months leading up to this day were very unusual for Paul and I. Not the norm. We went from a great summer into a slow winter… that’s when things changed.

Paul had started drinking more. He was drinking to excess and almost daily. He was eating really high sugar content foods and was super ornery. We had several serious arguments in the weeks before this. I couldn’t understand what was happening. He was not himself. I know now that this was because of the changes in his brain… One of the main tumors was on the left side of the temple area. This is the area that covers reasoning, personality and cognitive thinking.

I had a talk with Kitty during this time and mentioned that I felt like he was inviting the cancer back… he kept talking about how it was. I reminded him that he beat it- and he was not there now…BUT… for some reason- he wanted to re-live it. He kept talking about how I didn’t understand what it was like. He was sick again. His body knew it. And deep down… I knew it too.

***

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