Update - He lost the battle, he is no longer in pain

Greetings,

At 11:55 pm Tuesday night, my best frined, lover & confidant of almost 36 years lost his short battle to cancer.

We had this connection from the beginning, that connection is gone & I'm lost.

Please keep our family in your prayers as we go thru this difficult time.

Thank you,

Lori

Update - from Home

Greetings,

It's been a busy week. But we are finishing on a positive note.

We started hospice last week. A bed, commode, bed table & lift chair were all delivered. Also any meds he might need to manage his symptoms were prescribed along with a DNR order signed by his primary.

Monday was a busy day with a nurse, the bereavement coordinator & a chaplain coming to the house. The nurse got his basic vitals & expectations for them & us. Mike the bereavement coordinator came & talked to us about the process & how we could reach out to him at any time. Kathryn the chaplain was a challenge & made us think about our beliefs. We were both emotionally drained after this day.

Tuesday morning the social workers came & talked to us. They talked about expectations & answered any questions we had. We had to resign the paperwork for the DNR because the doctor we had chosen hadn't seen him in years & didn't feel comfortable signing the DNR. So we had to go back to the doctor that missed his cancer a few times in order to get a DNR. We finished the day on a positive note. I tried to drain his left lung & only about 20-25 ml of fluid came out & it was clear! This is the color it's supposed to be not the amber color that had been drained from his lung since January 24th. Not the 1,000 plus ml we had been draining but a minimal amount. We started to think a bit optimisticallly.

Wednesday was emotional. I had to go to the funeral home & plan his funeral. We picked everything out that we could except the catering & what the service was going to include. I was able to get thru this without breaking down emotionally. I had to choke back my tears when we walked into the casket room. I chose a single casket spray with all the ribbons a family member should have - father, son, grandfather, uncle, brother, & husband. I was so glad when we were done so we could leave. I shed my tears when I got home as that was something that I didn't want to do but needed to do so that I wasn't doing it when I in emotional turmoil. I started him a Selenium protocol today. Dr. Chris Barr said in his book about Selenium from choosetobehealthy.com He takes 1200 mcg daily. We are not giving up, we're going to continue to fight this, just a different way.

Thursday the hospice nurse was here again. She changed out the dressing of his PICC line & answered any questions we had. She called in a refill of a prescription patch he has to help with nausea & vomiting. The clinic was supposed to have it called in by 5, they didn't. I tried to drain his left lung again tonight. I only got about 10 ml & once again it was clear. He was off his oxygen for a short time tonight. His oxygen saturation vascillated between 90 & 95, occasionally dipping below 90 but coming right back up again. And he felt good, he wasn't short of breath. He was even walking around the house without it & maintaining 90% plus saturation. Out in NC, off oxygen it was almost a consistent high 80s saturation. Out there he was consistenly short of breath in the hotel room & couldn't sleep at night because of this.

The early morning hours of Friday were rough. He woke me up early.....5:44 am asking me what time it was. I said.....early....he asked how early.....I said 5:44 am, go back to sleep. Less than an hour later he was asking for pain pills. I told him if the sun isn't shining yet....its early, don't ask for the time. He got a sponge bath this morning. He was able to lift his legs up on a chair to wash & dry them off. He did it automatically without thinking. I said wow.....look at you. He looked at me & then realized what he had done & got a big smile on his face. He said he didn't even think about what he was doing.....just doing what he had always done. He was able to walk out to his shop with his brother today. He hasn't been out there since before Thanksgiving. He had trouble getting up the back steps (but I do too since there isn't a handrail) but he made it up.

I told him tonight he has to continue fighting & not give up. We believe prayers are being answered & maybe even a miracle in the process.

Continue to pray for him & our family. We're not giving up.

Until next time,

Lori

Update from NC & Iowa - We are home

Greetings,

This is NOT how we wanted this to go. We wanted to beat the odds again by beating Stage 4 cancer that had spread throughout his entire body. But God has other plans for him.

If God grants a prayer, it's God's direction. If he denies a prayer, then it's God's protection.

Tom went into the ER last Saturday afternoon, he coulnd't breathe & he didn't feel good at all. That is when we were told the news that his lungs were shot. Even if everything was healed up, his lungs couldn't sustain his life anymore without coninous oxygen.

We spent all day Sunday trying to figure out how to get back to Iowa. Two of our Iowa peeps from our bible study group drove out to NC to bring us home. They were hoping they could scoop us up & bring us back immediately. Unfortunately, it wasn't that easy.

The staff at Atrium hospital in Charlotte were absolutely wonderful. They made sure that we were comfortable & all of our needs were met within their abilities.

Monday came with staff working to get us oxygen tanks to get home. One nurse by the name of Carmen told me to look into maybe getting an flight home. I did look into getting a medical flight home. For a helicopter to go from Palm Beach, FL to NC to Ames, IA was $25k. This was way out of range for us. We did find a few flights from Charlotte, NC to Des Moines, IA. We got the info needed for the special oxygen, his wheelchair needs at each airport & other things. I wrote it down & kept it for the next day. It was hard to sleep that night as we were excited to get home.

Tuesday morning came with much excitement. We were told that tanks were coming that day. Enough for us to make the road trip home. I also got a call from hospice services back in Iowa. With much fear & tripidation, I talked with them. An appointment was made for Friday for them to come to the house, talk with us, get signed up & get the things he needed to make him comfortable.

Finally, around 4:45 Tuesday afternoon the oxygen tanks arrive. 12 tanks & an air condensor. The Apria rep said each tank should last about 2 hours, our nurse said each tank would last an hour. She told us that there was some Apria office in Indiana & Illinois along our route. Fortunately, each tank average about 2.25 hours. Enough to get us home & then some. Tom slept pretty much non-stop all the way home.

We got home around 12:20 Wednesday afternoon. Yes, we drove it straight thru. We stopped twice for meals & every 2 to 2.5 hours to change out the tanks. Tom would also use this time to self-cath if necessary to keep him comfortable. He took one pain pill the entire ride home. We got him on the air condensor shortly after we got home so he wouldn't have to worry about running out of air. He slept a lot of the day. He tried to sleep in our upstairs bedroom & it was too much for him. He went downstairs during the night & crashed out on the couch.

Thursday morning started around 7 am when my alarm went off. I rolled over & saw that he moved during the night. I came downstairs & checked on him. Still sound asleep. Hospice called this morning to check to see if we made it home ok. I told them we had & that we just getting moving for the day. She asked if she could come over today instead of tomorrow. After some resistance, my husband wanted them to come in & get things rolling. We signed up & equipment was brought in. He has a hospital bed in the living room, we have a commode, he has a table that reaches over the bed & he also got a lift chair to help him get up & down in a chair. He also agreed to a DNR order. This hurts me terribly. But he told me the last 2 months have been torture for him & that hw was just hanging on for me. He told me he's had enough & that he is ready. I love him very much. So much, that I don't want him to suffer. I've prayed to God & said......"If you are going to heal him, please do so. If not, please take him so his pain will end." His energy level is about 25% of what it was a week ago when his first round of treatment was done & we were planning to head home. The hospice worker said to watch his energy level & his eating. A decline in either will tell us a lot. Tonight he slept in his hospital bed in the living room & I slept on the couch. I wanted to be nearby if he needed me.

Friday morning was a flurry of activity. His brother showed up today, the hospice worker showed up with more meds for him should he need them over the weekend. One he needed Friday afternoon to help with his nausea. A couple from our bible study group showed up today to help move some things out of the house & into the shop out back. I also visited a couple of funeral homes here in town to get the info & to start thinking about making arrangements before I had to make them under duress. We also visited a couple of cemetaries to decide which one to buy a plot in. We chose one near a state park south of town. He isn't going to be embalmed which means burial will have to be within 72 hours of his passing.

I'll continue to update until his passing. After that I'm going to take a break while I grieve & learn my new life.

Until next time,

Lori