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