I would like to thank EVERYONE who has taken the time lately to visit me. I would also like to thank EVERYONE who took the time out of their day to write me a card and physically send it in the mail. I have probably received 100 over the last week. I can’t tell you all how much it helps me get through this. What I’m going through at the moment is the most difficult challenge I have ever faced in my life. I wish I had some positive speech I could give, but I don’t. I’m exhausted and not looking forward to this surgery again. Just know that when I start getting down, I go back and read your cards.

My faith and all of you are what is getting me from day to day at this point. I don’t want to let any of you down. I will continue to fight no matter how bad I am feeling. Just know you all are making a difference in my life. I love all of you.

Not much has changed over the past few days since the last update. Brandon continues to take in his intravenous nutrition and hasn’t been able to eat a “real” meal. He had a small amount of soup and bread yesterday. It’s increasingly difficult for him to keep his spirits up and hold on to a positive attitude, but he does his best. It’s a viscous circle of not having the energy to get up and move around, and not getting up and moving around weakens him more. The social isolation – not feeling well enough to go to church, take a walk around the neighborhood, visit with friends – is taking its toll as well.

We will find out on Wednesday what lies ahead. Your prayers and supportive thoughts and messages are much appreciated. He might not always have the energy to respond, but he does draw strength from each of you taking the time to let him know you care.

Brandon got to come home from the hospital last night. He looked like he felt a little better earlier in the afternoon yesterday, but he seemed pretty miserable when he got home last night. He will do intravenous nutrition at home, and it takes 12 hours (+/-) each day. He will see his oncology surgeon next Wednesday for reassessment to see if he’s strong enough for surgery. He is discouraged because he didn’t come home from the hospital feeling any better than he did when he checked in. This makes sense though because his current symptoms seem to be from the intestinal blockage – the pain, nausea and uncomfortable full feeling. Resolving the blockage is the only thing that will help with those. The nutrition he’s receiving should give him more strength, although he might not feel it while dealing with the other symptoms. However, his stay in the hospital did give his medical team the opportunity to go ahead with the PET scan, the GI scan and several other tests/procedures that gave them a clearer picture of what he’s dealing with. That was beneficial, even though it’s of little comfort to someone who just wants to feel better.

Your prayers and healing energy will help carry him through this next week (and beyond)! Brandon sends a heartfelt thank you to everyone who has taken the time to send cards and well wishes. He was touched last week by the huge stack of cards he received within a couple of days!

Brandon has been receiving IV nutrition and fluids for the last several days in the hospital. While he needs the nutrition, it’s making him extremely uncomfortable. He says he feels full all the time, to the point where he doesn’t even want to drink water or juice, and he has abdominal pain. They took him for another GI scan yesterday to make sure he was clearing what he is taking in and that there wasn’t a total blockage. The good news is that he is clearing. We were concerned about that because if they had to surgically correct the intestinal blockage now, he’s not strong enough to do the CRS/HIPEC at the same time. His surgeon’s hopes are that he can go for 2-3 weeks taking in TPN (intravenous nutrition) in order to build strength for CRS/HIPEC, and they can correct the intestinal blockage at the same time.

The plan is for him to go home tonight or tomorrow, and a home health care agency will bring the equipment for him to continue to the TPN at home. Kristen will manage it for him on a daily basis, and the home health care people will come every couple of days. Just pray that he can tolerate this nutrition for the time it takes to get stronger and that he doesn’t continue to have the discomfort and “full” feeling he’s been having over the past few days.

A little positive news, a little disappointing news and some news that we weren’t wanting to hear at all – that’s what happened today. First thing this morning, Brandon got the disappointing news that they were taking him down to install the PICC line in his chest, rather than in his arm. That’s the line they will use for his nutrition. This is the same type of line he had when he had dialysis, and you probably remember the challenges he had with that last summer.

He had the GI scope around noon, and that’s where the positive news came in. They didn’t find anything concerning or unexpected with that. He’s had some ongoing GI issues unrelated to the mesothelioma, but those looked to be in remission.

Then came the PET scan and the news we were not wanting to hear. The PET scan did show some progression of disease since the last scan in February. His oncology surgeon is out of town until Monday, but the thinking is that he will probably want to schedule another CRS/HIPEC surgery soon. He will have to make the call as to whether or not Brandon is a candidate for this surgery again, so we are still a little up in the air on exactly what happens next. Brandon was trying to hold positive thoughts that his symptoms were just related to the intestinal blockage and the flu he had earlier in the year, so it was definitely a letdown to hear the scan results. Just when he was at his lowest point of the day, one of the pastors from his church showed up for a visit and really helped lift his spirits. It was exactly what he needed at exactly the right time. He’s still struggling with what lies ahead, but knowing he has  family (including his church family and work family) and friends praying for and supporting him is extremely important right now.

When Brandon called his oncology surgeon to ask if the PET scan date could be moved up, they said they wanted to see him in the office so they could do his vitals and have a look at him since he’s lost so much weight in a short period of time. Some of his numbers weren’t as bad as they’d expected, but his hemoglobin was very low, at the transfusion threshold. His kidney numbers had also bumped back up in the wrong direction. The kidney numbers could be due to dehydration, but they were concerned enough about the hemoglobin, along with his not feeling well overall, that they admitted him directly to the hospital. They started him on a unit of blood last night, and they plan to insert a PICC line and start him on a nutrition that way. They are also going to do some GI scoping and go ahead with the PET scan as an inpatient. We’re pretty certain he will be in the hospital until at least Monday, probably longer. They sometimes continue nutrition through the PICC line as an outpatient, but they said that he’d most likely need a couple of weeks of that before he’d be strong enough for any type of surgery. What type of surgery will depend on the results of the PET scan. They are going to take care of the intestinal obstruction at the very least. So things are a little up in the air, but at least he isn’t just sitting around waiting while feeling miserable.

He’s in the new cancer building at KU Med. It’s called Cambridge Tower, and it’s just north of 39th Street from the main hospital. It’s the brand new building he has been in for his last two hospital stays, and there’s a new parking garage right across the street. He’s in room 7121 (7th floor), and would be happy to see friends if any of you want to stop in.

Please continue keeping him in your thoughts and prayers!

We are concerned that Brandon might not be able to wait until after his April 25 scheduled scan to deal with the health issues he’s currently facing. The discomfort and nausea he feels after eating is unpleasant and painful, so he isn’t eating enough and losing a significant amount of weight. This definitely contributes to the exhaustion he’s battling. The intestinal blockage set this all in motion, and it could very well be the cause of his current symptoms. He’s called to see if they can move up the date of the scan so they can get moving on a treatment plan. Right now, all we can do is wait and watch and pray. He’s continuing to fight, and with God and his friends and family on his side, he can do this! He’s always needed and appreciated your thoughts and prayers, but they are especially important right now.

Just wanted to let everyone know that Brandon still isn’t feeling too well. He’s once again having more bad days than good. He’s very fatigued and has bouts with the chills on a daily basis. It’s very difficult for him to make it through an 8-hour workday. The doctor last week thought that perhaps he had come down with some type of virus on top of his other challenges because she didn’t have another explanation for the episodes of the chills. Please keep him in your prayers as we go through these next few weeks waiting for his next scan. Not only is this a tough time for him physically, it’s emotionally exhausting as well.

Brandon met with the doctor this morning, and she said that the fatigue he’s feeling is understandable because his body is working overtime to fight this disease. She wasn’t surprised that he’s exhausted at the end of the workday and told him he should try to rest as much as he can. She also said the area where he’s currently experiencing the most discomfort is where the intestinal blockage is/was. He needs to definitely watch his diet and eat smaller, more frequent meals instead of the three squares a day. The hope is that he goes through the next month with as little discomfort as possible while waiting for the upcoming PET scan. At that point, they will reassess their next steps. If he does need surgery for the mesothelioma again, they can also address the scar tissue that’s giving him problems at the same time. If he doesn’t need surgery, they may come up with another plan for the scar tissue. She said there is also a chance the intestines will work themselves out before that time, which would be a blessing!

They talked about options to protect his kidney if he does have the HIPEC surgery again. It still doesn’t make sense that the insurance company will cover a chemo agent known to cause kidney failure in a particular patient just because it’s “the type of chemo used for that type of cancer.” And then they will cover the resulting dialysis. They will not cover the biologic testing to see if there is another chemo agent that would specifically target the genetic makeup of that patient’s tumor and potentially avoid the resulting complications.

The last week or so has been a struggle for Brandon. He hasn’t been able to bounce back after the intestinal issues that hospitalized him. The pain and fatigue have returned, and he has had more bad days than good ones. He’s fighting through it, but it’s been mentally and physically exhausting. He has an appointment with the oncology surgeon’s PA on Thursday just to let them know how he’s feeling and see if there is anything they want to do now, rather than waiting for his April 25 PET scan. Please continue to keep him in your thoughts and prayers.

Cancer research has come a long way. You see the commercials about precision oncology and targeted therapies every day. Unfortunately, the insurance companies get to decide who will benefit from these. Brandon’s surgeon sent his tumor tissue in for biomarker testing, but his insurance company has denied coverage. His surgeon has taken it to the medical director of the insurance company, but they’ve continued to deny coverage. We used to believe if you got sick and had insurance, you could get whatever treatment your doctor deemed necessary to help you recover. That’s not the case. This testing is not something a patient can afford to pay out of pocket. The cost compares to the cost of having surgery. So while the treatment options for cancer continue to improve, it’s a sad reality that many patients fighting this disease are excluded from these treatments.