Go Fund Me page

Greetings from Iowa, I don't normally ask for money but it's been a rough year as you know. The company that I've been working for said on Monday that the company is 45 days away from bankruptcy. I'm hoping they can head it off & keep us workers on. It's remote work so it's very nice I can work at home when the snow & ice are blowing outside in the winter. Wellmark Blue Cross Blue Shield is denying about $50,000 in claims saying the procedures weren't medically necessary. (like the catheters to drain fluid off his lungs) I'm having to appeal these claims to the state level, I'm hoping with statements from his medical providers & my records of draining his lungs in the hotel room every night convinces they otherwise along with other procedures. They are even denying the claim for the oxygen tanks & equipment to get him home from NC so he could die with his family around him. I also have almost $6,600 in doctor bills from the clinic the doctors work for before the insurance kicked in. Here is the link to the gofundmepage - Helping Lori, incurred bills, loss of her husband. The money that doesn't go towards medical bills will go towards much needed repairs on our home. The roof is 25 years old, it needs siding & windows. Some of the windows are as old as the home. (1870) Our privacy fence needs some TLC as well. It was damaged last fall in a bad storm & he never felt good enough to repair it. I thank you in advance, Lori

Pfizer Documents

Greetings from a very chilly Iowa, You've heard about Pfizer having to release all their documents within a year instead of the 75 years like they wanted. Do you know where you can access them? I have that link for you. Check them out here at Del Bigtree's website. Anyone who still gets the shot after reading thru those documents is really in denial. Until next time, Lori

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

Update from NC - His fight is over

Hello,

Last week went even worse which is why I have it as his fight is over.

Saturday afternoon it was so nice out I thought we should take a short walk at a nearby park. Tom wasn't feeling very good so I thought some fresh air would be good for him. I got him out to the sidewalk & brought the car over. He said......"Lori, take me to Atrium, I'm not going to make it." My heart immediately sunk & I ran back to the room to get the bag that has all of legal documents I have to carry with me at all times & then ran back out to the car. We drove the 5 minutes to the hospital & got him in fairly quickly.

The doctor ordered a chest CT to check for blood clots. One showed up & an unpleasant surprise. Tom asked the ER doctor, tell it to me straight....what did you see in the CT scan? The Dr said that his lungs are destroyed. Even if we were able to heal everything else in his body, the lungs can't produce the oxygen needed for the body to live.

We looked at each other with tear filled eyes & said please give us a minute. We both cried long & hard. He called his parents & his brother. I called our son while he was getting an ultrasound done of his legs to check for other blood clots. And we called our daughter together.

They transferred via ambulance from that small hospital to a bigger one 30 minutes south in Charlotte. We've been in a holding pattern while they try to figure out a way to get us home. Since he needs 4 liters of oxygen just to keep his stats up, he needs continuous oxygen. They estimated it would take 17 tanks of oxygen for the road trip home. That canceled out that. We are hoping to be on a commercial flight back to Iowa either Wednesday or Thursday. Some of our brethren from our fellowship group are going to drive our vehicle back along with our stuff in 2 different vehicles.

An air concentrator has been delivered to the house & hospice is getting set up for in home hospice.

This is not the outcome we wanted. We are still hoping for a miracle as they can & do happen.

I'll post more on Friday after we get home & get settled back in our home of almost 25 years.

Until next time,

Lori

Update from NC- this week was rough

Greetings from NC,

Sunday we had a date again. We went to a place in Charlotte called Bang Bang Burgers. They serve their burges on a wooden plank & the fries are placed in a paper envelope in a wire basket. The food was ok, nothing spectacular. We went there because they had grass fed burgers but not worth the $32 plus tip we paid. After we got done eating we went to a Walmart. Tom was able to walk from the parking lot into the store, all the way to the back of the store, to the front & out to the parking lot without his rollator. This is a HUGE improvement. He had to stop a few times to rest but was able to walk.

Saying Monday morning was rough would be a bit of a understatement. Tom was running to the bathroom every few minutes to urinate. A couple of nurses said he might need to go over to the hospital to get a catheter to drain his bladder. I wasn't totally thrilled with this idea & neither was Tom. He urinated about 3-50 ml at a time every few minutes. This isn't a whole lot if you really think about it. About 10:30 Monday night I took him to the ER to get some relief. They did a quick ultrasound & it showed about a liter of fluid. A male nurse put a indwelling catheter in. (this is one that stays in & drains into a bag) The male nurse didn't use any lube when he put it in. Tom was holding my hands as he did it, my hands were slightly crushed & his cries of pain really tugged at my heart. The valve was opened & the bladder started draining. Once the bladder was drained it showed 1.5 liters. They took a small amount to look for an infection which fortunately came back negative. It was a very painful night for him once we got back to our hotel room. He tried sleeping in the bed but ended up trying to sleep in the recliner. The positive side of Monday was that he weighed 188 lbs.

He saw the office chiropractor today too. He took X-rays & they showed us a few things. One thing it showed was that Tom has a mild curvature of his spine, meaning Scoliosis. It's not beyond help but we have to be careful with adjustments because of his physical condition. The x-rays also showed no cancer in the spine except for one small questionable area, the same for the pelvis. This is giving us hope.

Tuesday morning came with still some pain but he is slowly figuring out what it feels like to have a empty bladder again. He said he hasn't felt that in years. He's also figuring out how to walk with the bag attached to his leg. He filled the bag 3 times today, that's 1500 ml. He was shocked. The blood work came back from Monday's draw. His liver function is normal. This is fantabulous news considering his liver was affected by the cancer. His blood work also showed his PSA has come down. This is HUGE, it shows that treatments are working.

Wednesday was another rough day. The catheter that was placed Monday is causing him a lot of pain. He's figured out how to walk with the bag attached to his leg but he is still using his rollator to help him get around longer distances. He got thru most of his therapies today but skipped out on the vibrating table because of the pain of the catheter. We normally leave the office early on Wedesday's due to the Aarsota shot but today was a longer day for a Wednesday. He started to have a reaction to the shot within 30 of it. He started to have extreme fatigue & being really sleepy. His fever started about an hour later. Currently, it's sitting around 100.0. The pain from the catheter really took it out of him, he was a shell once again. Tonight he decided to take it out himself. We were able to undo the screw with a sewing needle & deflate the balloon that was holding it in place. He is almost back to his normal self again. We did call the hospital to ask if urine that was a dark, bloody red was normal & they said no. They recommended he come back in. But one of their favorite things to do is admit him & get help for him tomorrow. Which would have meant missing a day of treatment in the last week of the 1st round of treatment. We didn't want that to happen so the decision was made to do it ourselves. He had some pain but not as bad as when it went in.

The pain was so bad from the catheter tonight that the enemy got into his head. He asked me tonight......"Lori, if I don't make it, will you be ok?" My heart sunk, I tearfully shook my head no. I tried to get the word out but it just wasn't there. This is the first time during this whole ordeal that he even thought this way. He said after I said no, "then we have to win this battle, there is no other choice."

Thursday started out good & ended ok. We went into the clinic like we normally do. He got thru the usual initial stuff then went right to Rasha. Shortly after Rasha he had a meeting with Dr. Sara. He has some anxiety stuff about breathing since having two bad experiences in the hyperbaric chamber. Dr. Sara told him he'll get thru it & gave some pointers on how to lower that anxiety about being able to breathe. In the afternoon, we met with Dr. Jane. We went over his labs & a lot of his numbers are looking good. His PSA is continuing to come down as is his Ferritin level. Both Dr Sara & Dr Jane were concerned about him removing his catheter Wednesday night. They wanted him to see his primary today. We tried to schedule it but they said they couldn't help him with what needed to be done & told us to back to Lake Norman which was a quick no. They recommended 2 other hospitals in Huntersville, one was only a 5 minute drive from our hotel. The ER doctor tried several times to get him to take a Foley catheter which was retorted with a "Not an option." We finally were able to get a catheter that could be inserted & removed. The ER doctor came in & talked to us about the diagnosis in which she was shocked that we found out about it so late & really shocked in the treatment we received at Lake Norman hospital on Monday. She highly recommended that she admit my husband. She said he could have heart issues, kidney issues or liver issues going on. We declined & decided to continue with our idea of self catherization & be super careful to avoid an infection. He was given a dose of Lasix to help drain the fluid off his legs & feet. He was also given a prescription for 3 Lasix pills to take over a period of 3 days to help drain the fluid off his body. He is going to be pee'ing like a race horse so we have to make sure he keeps up with the self catherization or his bladder will become overly full. She also recommended he wear compression hose that goes all the way up his legs. It was a struggle but we got them on him. He looks kinda funny walking around with them on. At one point when he went to the bathroom tonight some dead tissue came out. In the ER I was squeezing his legs to move the fluid out of them & towards his bladder. It was so weird to see his legs & feet get smaller between my hands.

Friday started out good, went bad & ended good. He woke up early this morning by sleep walking. I'll never understand this disorder. I talked to Dr. Sara today & she said it's completely normal with his body doing so much regenerating & his mind working thru past things with family members for a total healing. She said not to try to wake him but keep him safe, try to guide him to a chair or the bed so he'll go back to sleep. He started with enough energy this morning, he got thru his therapies & we got instructions on when to come back next week to get his lab work done before heading back to Iowa for 2-3 weeks. We left Dr Buttars office feeling very positive & with energy around noon & then headed to the office of his primary physician. She wanted to see him before we headed back to Iowa. His primary doctor & her nurse were both shocked at how he was treated at Lake Norman hospital. No numbing gel & no lube to put in the catheter, the nurse said that was barbaric. He said his pain level was a 9 the whole time it was in. It changed his demeanor & his attitude. They tried to work with a urology office but the urology office were more worried about getting paid than they were about patient care. They said they couldn't take our insurance. His primary's nurse was able to get some sample disposable catheters ordered for us & will be here on Saturday. They are also trying very hard to get him into a urologist before we head back to Iowa. He was supposed to get in a day or two after the ER visit. Tom was losing energy quickly this afternoon at the doctors office. He laid down to snooze while his primary doctor, her nurse & I worked together at the nurses station to try to get things worked out. I told his primary that it was too bad she was in NC as I liked her & I would love her as my primary. Her response was......anytime. She told me that she was surprised they didn't admit him. I said they tried but it involved another Foley catheter & he wasn't going to go thru that again. She didn't agree with our decision but respected it. After the samples were ordered & got the info we headed back to the room. I was able to get him to rest for a short time while I ran & got a few groceries. He finally napped for about 20 minutes after 5 pm. He still wasn't feeling good when we ate but after going to the bathroom & resting a bit more he was finally feeling better. And spark has returned to his eyes. I got him some extra strength Melatonin to give him tonight to help him sleep. (And hopefully NO sleep walking)

I got some ozone therapy this week along with Chelation. I also got the results of my Chelation challenge that involved giving me IV fluids to move out the mercury & other heavy metals. My lead level was off the chart as was expected since I was around leaded gas as a child. I also have many radioactive materials in me like Cesium, Thorium & Uranium. My zinc, copper, iron, manganese & cobalt levels were also very high. They thought the copper level was too high but copper levels helped keep gray hair at bay later in life. I found my first gray hair this week. (sigh) Many woman my age have a lot more gray hair. I got the chelation on Wednesday. Around 8 pm Wednesday night I started to feel sick. My first thought was, I don't have time to be sick. My fever topped out at 101 & I hurt all over. If you've ever been in a car accident & the next day it's hurt to even move, that is what is felt like. Tom wasn't feeling good after his Aarsota shot, so we talked away most of the night. I talked to the nursing staff the next day & they said it was totally normal to feel like that especially if I have a lot of heavy metals. I guess I'm in for a fun time when we come back for Round 2 in April.

But the best news of the week is that we get to go home next week! The plan is to start heading home Wednesday after he gets some blood work done. He is going to be keeping his PICC line so they are going to need to send bandages home with us along with flushing kits so I can flush his PICC line daily. I'm also going to need to drain his left lung as needed. He'll also need to drain his bladder as needed until his prostate either encapsulates the cancer or the cancer gets bigger & then dissipates. The next round will tell the tale. We'll be home for 2-3 weeks before coming back to NC for another 4 weeks of treatment.

Until next time,

Lori