***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.
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.
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.
Update 4.23.12 Paul is in Ann Arbor
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.
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.