“When I said, “My foot is slipping, your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul.” Psalm 94:18-19
This week has been a crazy whirlwind. Since my last post, we received a different treatment option and instead of starting chemotherapy on Monday, Bryan will be starting it today (Wednesday). Over the last few days I found myself constantly asking, “why is this happening?” “what is the purpose of going through all of this?” “why did the second opinion that was supposed to reassure us that we were making the right move, end up stressing us out and confusing us?” Valid questions, all around, but the problem is that there isn’t really a clear answer to any of those questions. Instead of finding peace, Bryan and I were busy going around in circles trying to make the right decision, having no clue if what we were thinking was correct.
Last week Friday, we met with a different oncologist at a different hospital, for a second opinion. Hodgkin’s Disease, from what we know, follows a little more of a standard form of treatment. The people we know who have gone through treatment for Hodgkin’s have followed the same form of treatment that was suggested to Bryan by his original oncologist. We went to the second hospital assuming that the doctor would confirm that the “standard” of treatment would be what he would recommend for Bryan, and while he did agree, he presented us with a lot more detail about Bryan’s specific situation as well as a completely different option for treatment that we were totally unaware of. This second hospital is much bigger and a research-focused hospital. It is linked to a medical college so it makes complete sense that a lot of their staff is really interested in and knowledgeable about up-and-coming clinical trials and research.
This oncologist proposed a clinical study to Bryan that is in its third phase. Basically, the study proposes to take out one of the four “regular” chemotherapy drugs used for Hodgkin’s and replace it with another non-chemotherapy drug that is specifically used to treat relapsed Hodgkin’s lymphoma. The drug that they want to remove from the standard treatment can be really tough on the lungs and physicians have been looking for ways to take this drug out of the mix for a long time because of its lung toxicity. This new drug, the one being proposed as a substitute for the study, is one that is used often as a third line of defense for someone who would relapse with Hodgkin’s again a second time and it has high success rates used alone. The purpose of the study is to see if this using this new drug right away for treatment would help decrease the chances of Hodgkin’s relapsing in someone who had already beat it. The study actually makes really good logical sense and isn’t some crazy, risky trial.
To be in the study, you need to be a first time stage 3 or 4 Hodgkin’s (which Bryan is). The study is a random draw, so Bryan would be given either the regular four drugs, or the three drugs plus the newer one. He would know which arm of the study he is getting, but the study organizers would be the ones to choose. So, 50/50 chance that he would receive the new drug, and 50/50 chance of getting the standard treatment. There are approximately 1,000 people already in the study and they are looking to add around 100 more people (this is a nation-wide study). There’s a lot more to this clinical trial, but I just wanted to graze the surface so you could get a sense of where we are coming from.
We went home from meeting with this oncologist with a completely new option to think about. We were not prepared to make a decision on Friday and wanted to think about it over the weekend. There were so many questions we talked through and we wanted to ask some of the people closest to us with medical backgrounds, what their opinions were. Do we take a risk that the potential benefits of this study would outweigh the potential risks? Do we stick with the tried and true method? What in the world do we do? We had varying opinions from people we love and trust, and just realized that this was a decision that we needed to be comfortable with, which both oncologists echoed that fact. Neither doctor wanted us to do something that we were uncomfortable with, regardless of how they felt about the study.
Monday came around, and we still didn’t know what to do. We chose to have Bryan’s port installed (which by the way, I am quite sure I will never cease to be amazed by medical technology — really a crazy thing), which was already scheduled to occur anyway and then meet with the original oncologist to get his insight on the study. So, enter yesterday. We were now on day four of thinking about what we should do and being worried about making the right decision. Totally exhausting. And really, just running around in circles in our head, not getting anywhere.
There is so much unknown with this newer drug as it hasn’t been around long enough to know the exact long-term effects. This is scary when you are talking about potentially administering it to someone who you love more than anything. While the immediate results seemed super interesting and really promising, there was just no way for us to wrap our heads around the unknown. We thought about joining the study and just letting God decide what group to put Bryan in…I mean, He already knows which treatment route we will go, right? We wrestled with the idea of leaving the original oncologist that had first walked us through this whole idea of cancer and how we could handle it. We had built a relationship with him over the past couple of weeks and weren’t prepared to let that go. We still liked the idea of the bigger hospital with greater resources and a bigger sense of security. We prayed and prayed. And prayed. And we just did not have a resounding sense of peace about any of the options.
On Tuesday morning, Bryan woke up and still didn’t know what to do. He received a phone call that morning from the research department at the new hospital and found out that the CT scan that he had had done was more than 30 days past from the start of when his treatment would be (32 days to be exact). Therefore, the researchers could not use that scan and he would need a new one done. The cost of a new CT scan would not be covered by the study and would likely not be covered by our insurance.
Okay, God. We hear You. I mean, could it have been made any more clear? I am still in awe of the fact that He quite literally closed that door for us. I was feeling lost, conflicted, and confused and now I have that peace I was praying for. And Bryan does too — we feel that the trial is just not right for us, right now. Maybe someday we will know why, and maybe we never will, but we are set in our decision and have that peace that we were desperately praying for.
Well, now that the trial was off the decision table, we needed to pick which hospital and oncologist to continue to work with. Bryan feels a greater confidence and peace with the bigger hospital because of the greater resources and great depth of staff, and while we really loved the first oncologist we met with, we are going to switch to the new doctor. The hospital he has chosen was decided based on the fact that it was the perfect combination of “head” and “heart” in Bryan’s mind. The moment that Bryan decided what he wanted to do, was such a freeing moment. Yes, we still have chemotherapy to be nervous about today, but we know that God is totally here. He is next to us as we make these super hard decisions. I think this was truly the hardest decision I have ever made in my life…because it involves a whole life. And not just any life, but the life of my best friend and the one person I love more than anyone else in the world.
So, Bryan starts his treatments today and there is a lot of unknown. Will you please continue to pray with us for Bryan’s overall emotional and physical health? The port procedure wasn’t as easy as explained or expected, and so this week continues to weigh heavy on both him and me. Our kids have been combating some sort of virus, too, so sleep hasn’t been great and attitudes have been a little down. We are praying that Bryan does not catch any of those germs. Prayers that Bryan tolerates the chemotherapy well and that he would have limited to no side effects would also be so appreciated. This is all so unknown to us and we would appreciate any prayers for comfort and peace as we begin!
On a positive note, again, we are beyond overwhelmed with all of the love, support, prayers, and positivity from our friends and family. Neither of us are very good at asking for help, and haven’t really wanted to, but that hasn’t stopped people from offering help and really coming alongside of us. Our neighbors have brought us food and mowed our yard for us. Our family has put together a care package for Bryan as he begins treatment, filled with encouragement and necessities. Friends and family have written encouraging notes to Bryan that will uplift him as he is bound to need throughout this journey. We have received some really uplifting cards in the mail. Our kids have been watched and cared for so I have been able to be with Bryan every step of the way so far. People we barely know, have been in touch with Bryan to share their experiences with beating Hodgkin’s and answering his questions. And we have had so many people just listening and talking us through things. It is truly amazing to me that there are so many people who care for Bryan so much. We feel so surrounded and so, so loved and supported, so thank you for every kind word, deed and prayer. I may not call you out on it, but know that it is not unnoticed or unappreciated!
“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; stuck down, but not destroyed.” 2 Corinthians 4:8-9
We know that God is the ultimate Healer and we know that regardless of who here on earth is treating Bryan, He is the One whose hands are in this entire process.
Cancer — we are coming for you — and we have the strongest Fighter on our side! Let’s do this!
“The Lord will fight for you; you need only to be still.” Exodus 14:14