2Fer: Part 2Fer
Hospice isn’t a four-letter word; so, when did it fall into this category? Why is it so bad? It’s probably because you have known too many elderly people who have entered a hospice facility to die. Or you have had a family member require hospice care as they were dying, or a friend’s grandparent had a hospice care nurse at their house 24/7 as she fought cancer. All these are scary situations that contain the word “death” in them; so, I could see how your brain would put “hospice” into the “four-letter word” category. But the reality is that hospice exists to help ease pain and suffering, offer greater quality of life than that of during treatment, and give the patient someone to turn to in a time of need. So, why is it so bad?
Monday, January 24th, Ann and I made the trek up to UNC for MRIs, CTS, and appointments with Dr. Weiss, Dr. Shen, and the palliative care team. Monday was a long day. Dr. Weiss had the pleasure of breaking down the scans for us. The MRIs and CTs did nothing but bring bad news. Cancer is taking over my lungs and there is nothing we can do about it. Chemo no longer has any effect on the disease and radiation would only do more harm than it would good. Immunotherapy is an option but we need a trial.
A trial!? Did someone say a trial!? “I just happen to have a Phase I FDA approved trial involving immunotherapy that is pill based and being run out of right here at UNC!” exclaimed Dr. Weiss from the corner of the room.
Ok, so that didn’t really happen. But he did offer me a spot in the trial, and he had the trial coordinator waiting right outside the door to speak with me. So, we brought her in and began reviewing documents. Excitement filled the air, as we truly weren’t “out of options”, we found something that just might work. We were going through all of the trial requirements and exclusions and I was checking off every box. It appeared I was the perfect candidate. It was getting late and I was already 30 minutes late for my appointment with Dr. Shen. So, we packed up and left the trial coordinator and told her we would contact her with our decision later that night. Off to meet Dr. Shen.
Once again, Dr. Shen reinforced it was nothing but bad news, even on the radiology front. Cancer was growing, and there was nothing we could do about it. We talked to her about the trial and she thought it would be a good idea to entertain entering it. We kept the meeting short since we were all tired and just wanted a warm meal and a bed. We left UNC and headed to The Loop (come on UNC grads...who remembers heading down to The Loop for dinner like it was some sort of fine dining establishment!?!) for dinner and back to the hotel to finish reading through the trial documentation.
I finished reviewing all the docs and sent the text to the trial coordinator: “Emmy, I’m in.” Decision was made, I was going to put the fate of my life into the hands of data derived treating mice. At this point, why not? I’ve truly got nothing to lose. She instructed me to be back to UNC Tuesday morning at 9:30 to finalize signatures and go over some last instructions. Finally, my brain and body could rest. Off to bed to get some shut eye – wait, I’m in a hotel room I can’t really go “off to bed.” Let’s rephrase that, “Stay in the bed, but rearrange the pillows, to get some shut eye,” tomorrow was going to be another long day.
What was supposed to be a good night’s sleep turned into a “why is the hotel furnace making that noise over and over again night’s sleep.” Which allowed me to get up early and go grab some bagels and caffeine, which would be crucial in getting through the day. We began our discussion with Emmy about finalizing the paperwork for the trial and then BOOM. We missed one of the criteria for the trial and just now saw it. Participant can’t be on corticosteroids…I pop corticosteroids like breath mints. Seriously, I take 4.5mg of dexamethasone daily. That’s a pretty large dose for those that don’t know. Pow-wow with Dr. Weiss time…do I come off of the steroids to get in the trial or do I continue on the steroids for a higher quality of life (they help me breath)? Since this trial was going to be the last chance and there was a line of people waiting to get in the trial, I made the decision to taper the steroids (I had 28 days) and enter the trial. Phew. We did it. I was in the trial. I could head home and get some rest in my own bed knowing that I was going to give this fight one last gut punch.
Once home, relaxation occurred. Ann and I could destress and hang with the kids and dogs. Lucas had soccer practice and I was put in charge of dinner; Ann and our young Mbappé would be home around 6:30. I’m normally a “phone on silent guy”, but for some reason I had the ringer on that night. Good thing I did. 6:01PM caller ID is showing Dr. Jared Weiss. Better pick that one up.
“Hey Ben, I really hate to be calling you to tell you this, but you are already kicked out of the trial. The radiation you did on your entire spine for the leptomengenial disease excludes you from the trial. You are officially out of the trial, and out of all treatment options. I can give you more chemo if you really want it, but it isn’t going to work. I can call hospice in the morning if that is the route you want to go. I’m really sorry I have to tell you this over the phone. I’m really distraught over this. I’m so sorry.” – Jared Weiss, **Word-for-word this quote is not accurate, it is as close as I can remember to what he said.**
I hang up the phone. The house is silent. Just me, Jasper, Mello, and Piper in the room; Micah down the hall in the play room. It’s all sinking in. We have officially hit the end of the road. What do I do? What do I say to you? How do I tell Ann I have already been kicked out after all of the hard work the past 48 hours? The logical response is to curl into a ball and cry with my doggos; but that isn’t going to get me anywhere. I pick up the phone and call Ann to break the bad news to her. And to my surprise she was not as broken as I thought she would be. Because at some point we knew the trial would come to an end, just not end before we even got started.
So, here we are. Hundreds of us bound together as the #thundersquad standing at the end of a dirt road. Nowhere to turn. A giant orange and white barrier at the end of the road proclaiming “no outlet.” Well shit, I missed the turn for the Tanger Outlet stores in Myrtle Beach 100 miles back. Guess we’ll have to turn around and go back. Unfortunately, it doesn’t work like that in the cancer world; it is a one-way journey and we have officially made it to no outlet.
This past Friday Ann and I met with the onboarding nurse for Lower Cape Fear Hospice. All of my care will be given from the house. I have no desire to be at the hospital unless it is a true medical emergency that can only be taken care of at the hospital. Fortunately for me, I’m still relatively healthy outside of the cancer having a dance party in my lungs. This will allow me to live a fairly normal life until the disease takes full control of my lungs. I have asked for three things from the LCFH team to help me with until we get to that point: 1.) Improve breathing: I’m currently on 24/7 supplemental oxygen because breathing has become labored and stairs are a challenge; 2.) Pain management planning: the decision to come to Hospice came with the hope that I can pass onto the next phase of life pain free while maintaining a fairly normal life; 3.) find the balance of quality v. quantity of life: there has to be a point in healthcare where we find a spot where we can extend life at a rate where we are not jeopardizing the quality (pain-free enjoyment) of life.
On this snowy Saturday (haha, snow at the beach!?) we start a new adventure. We open our arms to the LCFH team and welcome them to the #feelthethunder family. Together we are going to get me to a spot in my life where we will feel comfortable letting go and giving my soul to someone else to look over. It will be hard. It will be hardest thing any of us have done, but we are the #thundersquad. We got this.
So, back to the opening paragraph. Why does hospice have to be a “four letter word?”
Yes, I am dying. And now we know at a much more rapid rate than we thought. That doesn’t make H-O-S-P-I-C-E a four-letter word. It makes it a wonderful tool for helping people like me deal with making the transition to a different state of life. I truly look forward to working with the LCFH team to get me there.
I will continue to update the blog with thoughts and any medical updates. Please use the blog to reach out and leave messages of encouragement. I’ve got a lot of fight left in me, so hold onto those tears a little while longer.
Thanks for all of the love and thunder. Much love back to all of you.
Ben
