Update from NC-Its been a rough week

Greetings from NC,

I normally start the weekly update on a Monday on his first day of clinic visits but I'm going to start on a Sunday this week.

On Sunday, Tom felt pretty good, in fact it was day 3 of a 4 stretch. He felt so good that went to Outback steakhouse for a late lunch. He ordered the grilled chicken along with the fresh veggies of the day - broccoli. His favorite - not. He also drank 2 big glasses of water with lots of lemon in it. He packed away a good lunch. I was very happy with him. He had spinach with mozzarella cheese on it for supper. We were trying to build up his iron level for the blood work the next day.

Monday morning came & he was once again happy & cracking his usual jokes. He was making everyone laugh at the clinic. He got thru all of his therapies & IV's with no issues. He was making wise cracks while on the lymphstar vibrating table. He ate a good lunch there. Towards the end of the day he started to slow down & not be so talkative. I figured it was from the long day at the clinic. I was hoping & praying that the good streak would continue. I drained his right lung & got 750 ml out of it. This is a LOT less than we normally got out of it. I then drained 1,000 ml out of his left lung. We waited to drain his lungs in hopes that his bloodwork would come back good. When we drained the right lung, something happened at the top of his shoulder & he had a nerve that got pinched one way or another.

Tuesday morning came & it was bad. He had zero energy & wasn't feeling good at all. I helped him get dressed. He struggled to get out the door. I dropped him off the clinic doors & he struggled just to make it thru the doors to wait for me at the elevator. My heart was sinking. We got into the clinic & he couldn't even stand for weigh in. We wheeled him on his rollator to Dr. Sara's office. There we got the news that his hemoglobin had dropped to 8.2. We could no longer avoid it, he had to get blood in order to fight for his life. He broke down into tears at the news, he said "I've fought so hard." We got into quite a disagreement about him getting blood but he did what he felt was right for him. The right chest drain was also causing him a lot of pain so Dr. Sara ordered a chest xray to check the placement. The xray showed the placement was correct but for some reason it was causing him a lot of pain. He didn't sleep very well this night, he woke me up every 15 minutes from about 3:15 on. He was afraid to go to sleep since he was having such a hard time breathing.

Wednesday morning started with a 8:30 am appointment at the hospital to get 2 pints of blood. They said he would start feeling better after the first pint, he felt a bit better but not really better like they said. We pleaded for me to give him blood but the Red Cross has dropped it's policy for family members to give directed donations to family members that it's resources are best served using community blood. We don't know if the blood he received was from a vaccinated person or not. I'm going to see if I can find out by using the serial number from the blood bag. Shortly after one, we met with the surgeon that put in his right chest drain. He showed us the xray & the placement was correct. And explained why it might have caused him shoulder pain. We went over the clinic for him to get is Aarsota shot. We left & came back to the hotel. Shortly after we got home, Tom started to have intense pain in the area of the drain. We called the hospital back & requested to talk to the nurse that has helped with his drains. We told her he needed to get it out stat. The surgeon said he needed a doctor's order to take it out since it took an order to put it in. We quickly called Dr. Sara & got the order in. However, they weren't able to schedule the removal until the next morning. Another night of very little sleep ensued from the pain of the right chest drain. He didn't have much of a reaction to the shot so we are a bit disappointed

Thursday morning came with another early morning at the hospital. The outpatient staff know us by name. They come over & get the paperwork from us instead of us going to them. His cancer story is all over the hospital. Even more reason we are going to beat this! We made our way back to radiology & from there we went back to the cath lab. The staff were nice enough to let me go back to that area with him. The surgeon did an ultrasound of his chest to see how much fluid was in the right chest area. There was 10 ml at most. The presumption at this point is that the right lung has stopped producing fluid. It didn't have to be drained until almost a month after his initial diagnosis on Jan. 23rd so it would make sense that it would stop first. However, his left lung had a lot of fluid on it. The one nurse got the equipment to drain his left lung. We drained off 1.5 liters. They prepped him to take him across the hall to the cath lab to remove the drain but a possible heart attack patient came into the ER. We waited about 30 minutes & they decided to take him to another radiology room to remove the tube. They took an xray & more ultrasound & it showed the right lung was empty of fluid. Tom told them to go ahead & remove the drain. If it accumulates fluid, we will either set up a thoracentesis or have another drain put in sometime in the future. When he came out of that room, he looked & felt MUCH better. His whole demeanor changed. He didn't get much sleep again tonight. His mind was playing tricks on him that he couldn't breathe & he couldn't sleep well as a result of the mind tricks. We met with Dr. Jane today to go over his test results & his cancer panel. Some numbers are looking good & some not so good. There is more treatments to come. We found out today that he comes back 2 weeks after the end of round one for round two. I asked to come home for a short time. We've been out here since Feb. 6th. He said he would think about it.

Friday morning came with renewed energy. He got up early.....too early. We got to the clinic early since it closes at noon on Friday. He got thru weigh in & they took some blood to check his CBC. We won't know the results until Monday. He got done around 11 am. They tried to get him to do a hyperbaric chamber treatment & he quickly declined. They told him it would be good for him but he still said no. When we got back to our room, he said we can throw some of our stuff into storage so we don't have to haul it back & forth between NC & Iowa. I asked.....Does this mean we are going home? He tearfully told me we are going home. We reserved a small storage unit just a few miles from our new hotel that is only 5 minutes from the clinic. This will keep our little car from feeling over crowded. On our way back from checking out our new hotel & checking out storage units, the weather started to change. Tom's hip that hasn't bothered him for weeks started hurting. He limped from the car to the room when we got back to the hotel. A pain pill & a hot bath helped with the hip pain. He even ate his steak dinner in the tub. I told him that if this was me fighting for my life, I wouldn't let my claustrophobia prohibit me from getting in that chamber. That I would do anything it took to fight for my life. He looked at me & said I just developed this, I'm going to enjoy it for awhile. I had to conquer my fear of elevators when he was first diagnosed to get from the parking ramp to his room on the 5th floor in the oncology ward. I'm hoping in round 2 we can get him back in the chamber.

They drew my labs last week & they came back as good enough do the toxin challenge. All of my numbers were in their ranges except for two. Those two areas that are too high are my Vit. D3 level & my Ferritin level. My Vit. D level was 149, the normal level is 30-100. Dr. Mayer Eisenstein said that anyone who lives north of the 37th parallel doesn't get enough sun for optimal Vit. D levels. I've been taking 50,000 IU daily since early December when I broke the fifth metatarsul in my right foot to help with bone growth. Dr. Eisenstein borrowed a chart from a Vit D council for his webinars. It looks like I'm pretty protected from most cancers.

My Ferritin level is high as well. It should be between 15-150, mine is at 261. Ferritin is the protein that carries iron in your body. Dr. Sara hasn't said anything to me about the test result being high so I'm not going to be too worried about it.

I did chelation again this week. I had an annoying headache that started late Thursday night & didn't go away until late Friday morning. I also got some Vit. C. Warning, if you get this, you are going to be cold for awhile. I was chilled for most of the day.

We are hoping to head to SC tomorrow for bible study with a group down there but it will depend on how he feels tomorrow.

Until next time,

Lori