Brad’s Story

Site created on April 11, 2022

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Where does one even start...  You never think you are going to be the one on this end of things.  Here's how we got here.  While on our dream vacation with our kids down in Florida during spring break, Brad began not feeling well. Nothing super concerning- a cough mostly. After a couple of weeks with no relief and then having difficulty catching his breath at times, he made a doctor visit and was given antibiotics for possible walking pneumonia or bronchitis. After another week of no improvement, Brad went into urgent care. The doctor there sent him for a chest xray, as they noted not much air getting into his left lung. The xray showed his left lung half blocked with fluid. Brad was then sent to the emergency room and went through a series of tests to try to figure out the cause. When they could not figure this out, they sent him up to Abbott Northwestern in Minneapolis.   Brad spend 9 days at Abbott enduring a number of procedures and tests including having his lung drained, CT's, Xrays, blood work, and chest tube put in to continue to drain recurring fluid. After draining the fluid, CT scans showed a mass on his left lung. A biopsy of this mass has led us to a diagnosis of cancer and our lives being turned upside down. 

Newest Update

Journal entry by Anna Haynes

Well, it certainly has not been an easy and uneventful couple of months. We had a quiet Christmas at home and family were able to come celebrate with us over the kids' school break. Brad was able to restart the Keytruda on January 4th. This was the first of any kind of treatment he received since the beginning of October. The doctor continued to remind us that is very unlikely to have a second reaction to the Keytruda, especially since his first reaction would actually be considered on the "mild" side of a reaction.  This mild reaction landed him in the hospital for 19 days, so I cannot even begin to image what a severe reaction would be.  Brad tolerated the treatment that day and we lived on pins and needles every day after wondering if he'd react again. More on that in a minute... Weekly labs showed that Brad's iron was low so he had to go in for 5 separate IV iron infusions. On his 3rd round, when they took his vitals prior, found his heard rate at 150+ and a fever of 103.  So instead of an iron infusion, he got a trip to the ER. There was so much fear of ending up back in the hospital it took some convincing to get him to go up to the ER. I totally get it. He was finally on the upswing, and the thought of going backward was terrifying. We sat down in the infusion center for about 15 minutes hoping his vitals would return to normal, but also knowing that they wouldn't. So off to the ER we went. His temp registered at 104.2 in the ER. They started him on IV antibiotics and tylenol and after several hours of tests, labs, and scans, he was diagnosed with a lung abscess (infection) in his left lung. After about three hours, his fever finally broke. If you've not experienced a fever that high breaking, it can be a little scary to watch. You could tell he was starting to feel better, but then there was so much excessive sweating and shaking. The ER staff reassured us this was very normal, but that did not make it less scary for me to watch.  They wanted to admit Brad to the hospital to start him on a strong antibiotic for the lung infection and to monitor him for a couple of days.  That was a hard pass for Brad. It is nice that we live just minutes from the hospital, and we basically had to promise the world that if his fever came back or if he otherwise started to feel worse that we would come right back in. As we were getting ready to head home, digestive issues started out of nowhere. The doc has said if we saw another reaction to the Keytruda, it would likely come 2-3 weeks after treatment.  We were at 2 weeks and 4 days at that point. The ER doc said it was not caused by the lung infection and though antibiotics can cause it, he had only had the IV antibiotics for a few hours and she was certain it wouldn't have caused that reaction that quickly. She also "informed" us that this was a common reaction to his immunotherapy and in her opinion was most likely what it was. So here we are- lung infection, possible hospital stay, and now another reaction to the Keytruda. I tried to hold it together, but told Brad, and the ER nurse in the room, that the doctor had no idea that severity of what she just told us.  She said it so nonchalantly. With no thought or idea that what she was saying told us that Brad would need to stop the Keytruda and be without a treatment option. The nurse must have said something to her, as when she came back into the room, she modified her statement to "she couldn't know for sure, and it's something we should follow up with oncology about."  It was too late and didn't make us feel better.  So home we went. Numb and scared. We stayed that way for the next few days until we could meet with oncology again. Trying to act as though things are normal and fine as to not unnecessarily worry the boys is probably the most exhausting thing I've ever had to do. We are honest with our boys about things, and they were told the things that we knew for a fact are true, but we don't share the unknown. When we met with oncology next, he was unconvinced that Brad's digestive issues were being caused by the Keytruda. He was suspicious of the timing. There were no issues at all until that night in the ER. That though the IV antibiotic may not make a "typical" body react that quickly, Brad's body is not functioning typically. However, not knowing for sure what was causing this, Brad was not able to do his next round of Keytruda. It would be too much of a risk in case it was actually the reason for his GI issues. We were given an appointment in the cities with a pulmonologist, primarily to talk about the antibiotic Brad was prescribed as it was well known to cause these issues, and it was a high dose prescribed for four-six weeks.  This would mean possibly no treatment at all until Brad finished with the antibiotics to see if the GI issues resolved after that. The pulmonologist said that almost all antibiotics have this as a common side effect and that changing the antibiotic mid-course, could actually make it worse, so he was not in favor of changing it. Though that was discouraging, somehow, thankfully, the GI issues all resolved on their own within the next few days even while continuing on the antibiotic. So whether it was the IV antibiotics from the ER or something else, it wasn't the Keytruda. Win. 
Brad has his most recent treatment on Feb 22nd and also had his most recent scan on that day. Treatment went well, but after each scan, there's nothing but worry about the results. The downside to doing these scans here is that the images are sent up to the cities to be read, so it can take anywhere from a day to a week to get the results back. We sit glued to our phones waiting and wondering when the results will come, and of course what they will say. Brad typically does scans on a Monday, and they are usually back by the time we meet with the doc for labs on Thursday. This time, his scan was Thursday. The doc told us that we could get the results over the weekend, and if we did, and chose to open them, to not freak out if there were things we didn't understand (since there wouldn't be anyone for us to get in touch with in oncology for questions since its the weekend). Well, results came back Saturday evening at 6:30. Ugh. I simply can't not look at them. I really do wish that some things didn't come to your MyChart. So we opened them. And I almost instantly wished I didn't. New spots were found in his right lung. His left lung remained stable and nothing was found anywhere else. New spots. My stomach dropped. It's hard to read all the other information when you see those words. No one to call to ask about it and more than 36 hours until Monday morning. As we sat in the living room being swallowed by fear, we were again left with the task of creating the facade that everything was fine. Continue making dinner, continue asking about homework, continue preparing for the coming week of school and work, all while being swallowed by fear. All I could think was that the Keytruda was no longer working and now what. I think we probably slept the entire day on Sunday. We were so emotionally exhausted and sleep is sometimes the only reprieve you get from all the feelings of fear and worry. We were able to meet with the doctor on Tuesday. He indicated he was surprised to see the new spots, as the scan done in December and the CT that was done in the ER did not show anything. However, he also said he consulted with the pulmonologist and they both agree that the spots don't present as cancer typically does and they are leaning more toward these spots as being infection or inflammation. Unfortunately, without a biopsy, you don't know for sure. So good news- the oncologist and the pulmonologist don't feel this looks like cancer. The bad news- that doesn't mean it isn't; Being infection or inflammation does not mean there's an easy solution; In order to find out what it is, Brad has to undergo a bronchoscopy in order to get a sample to biopsy. So our next step is the bronchoscopy. We will go up to Abbott next Thursday for this. It's a common procedure and generally low risk. However, a bronchoscopy was attempted two years ago with Brad's initial stay at Abbott as they were trying to figure out why he had the fluid in his lung. That did not go well. As they intubated him, his right lung collapsed and he was not able to maintain his oxygen. They ended up aborting the procedure.  So we definitely have a lot of anxiety going into this one. Brad's health and lungs in general are better than they were two years ago. The doctors and anesthesiologist are aware of all of this and still feel confident in doing the procedure. So for now we continue to sit and wait until Thursday. Nerves are at an all time high. Brad certainly hasn't been eating well and complains a lot about an unsettled stomach and nausea. That also adds to my worry. He had been eating so well since his hospital stay, and it's scary seeing these symptoms again. Things not tasting right, not feeling like eating, and occasionally throwing up. It's hard to know if it's some kind of bug, if it's nerves, if it's the Keytruda, or something entirely different. 

These last few months have definitely been challenging. So many ups and downs and so much worry. I feel like there's been little reprieve between one issue and the next. My body is in a constant state of worry. It's hard to answer questions about how things are and it's hard to share things when they happen, because so often we don't have any answers. I feel like I'm crying wolf when I share things aren't going well only for them to not be the issue we thought (like the IV antibiotics v Keytruda). There are so many variables and unknowns. There are so many things that seem like minor issues (being prescribed an antibiotic) that can turn into big issues (possibility of no treatment for 4-6 weeks). There's days I don't feel like I know which way is up and I don't even want to open my eyes to even try. There's days I sit in the shower and cry and hope the water drowns out the sound so my kids don't hear. There's overwhelming fear and panic. But then there's good days. There are school events, snuggles on the couch, family movie nights, late night chats with our teenagers, moments when things don't feel so dark. There are unexpected visitors (shout out to my Aunt Judy and Uncle Lennis who drove up to visit from South Dakota), phone calls, hugs at the grocery store, goodies being dropped off, constant check ins from friends, and so much support from coworkers that help me get through the days- probably more than they realize. We are so thankful for all of that. Brad somehow keeps such a positive attitude. He has been my rock. I feel guilty for that some days, as it should be my job to be his rock. But he reminds me we are a team. We need each other. And we will continue to do our best to jump each hurdle in front of us, even if one of us has to get into the dirt to be the step that gets the other one over. I continue to pray for our ultimate miracle. The thought that everything could come crashing down has been ever present in my mind these past couple of months. A constant reminder of the reality that we are truly dealing with. 

#prayingforamiracle 
#cancersucks

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