Making a Decision

Way back in 2013, I never could have dreamed that becoming a birth doula would prepare me for this critical moment in our lives.

Shhh....I took a photo of Shane praying. I catch him in this position often these days.

Spending innumerable hours over the past years caring for women (and their husbands) through challenging moments has prepared me for loving Shane through his difficult moments. I tell Shane he's like a woman in labor; to the women who have given birth and the doulas out there this will all sound familiar....

  • Don't speak a whole lot unless he wants you to. And if you do speak, don't expect an answer.

  • No loud noises/voices when he's not feeling well, they're distracting and obnoxious when he's trying to focus in the painful moments.

  • Keep him eating and drinking to maintain his strength.

  • Keep a close eye on him and listen and watch for any cues that indicate he needs a position change or something else to make him more comfortable.

  • Stay close, hold his hand, and show him that you're here for him.

  • Tell him he can do this.

  • Believe in him when he doesn't believe in himself.

But one thing that has shaped me most is watching husbands and wives make the decision of where to birth. For some it's simple, for others it is heavy and hard. Countless times I've seen mothers who wholeheartedly want an out-of-hospital birth, but they bump up against an insurmountable obstacle---their husband's discomfort. And in the end, that discomfort becomes paramount and she sacrifices her intuition, needs, desires and dreams in order to ensure her spouse's comfort. Inevitably, I feel extra feisty when I see this dynamic play out, and I want to grab these dads by the shoulders and shout, "Her body, her choice! You find a way to get comfortable with her decision, bucko!" Of course, I restrain myself and say something polite instead.

Let's bring that back to Shane's situation. Immediately after his diagnosis, we had two days alone together. I was walking home (after buying myself a buttery ham and cheese croissant from The Midwife and the Baker), and I was hit with a strong impression----Shane's situation was just like birth. He had a decision to make that would affect his long term physical and emotional health, and only he ought to make that judgement call. I arrived home, croissant in hand and a new found understanding in place. Later that evening as we talked I asked him to promise me one thing, and I promised him one thing in return. I asked him to stay open to any and every kind of treatment---he readily agreed--and I promised to support him no matter what type of treatment he chose. After all, his body, his choice.

Once I spent a week plus squaring away my business and handed it over for safekeeping to a wonderful team of women, I began studying The Moss Report in earnest. Ralph Moss, a cancer researcher of 40+ years, has put together an excellent guide for every type of cancer. He walks you through everything you need to know about your specific type of cancer, as well as every conventional and complementary treatment. It's a giant tome of a book (544 pages to be exact) but somehow it was an incredibly enjoyable and enlightening read. He's written his textbook in such an approachable way, and it's chock-full of fascinating information.

We did our due diligence. I studied and distilled information to Shane, we visited three oncologists (Stanford, UCSF and El Camino Mountain View), consulted one-on-one with Ralph Moss, spoke with international clinics, and pondered and prayed (Shane did most of the heavy lifting in the prayer department!). I also dug into the research on PubMed and other excellent databases. When all was said and done, we narrowed it down to two options:

Conventional Treatment--All three oncologists recommended the same course of action.

  • First Line- Immunotherapy

  • Second Line- BRAF Inhibitors (drugs that target a specific mutation that's present in Shane's melanoma cells)

  • Third Line-Chemotherapy

Treatment at the Integrative Immune Oncology Clinic in Budapest, Hungary

The more I learned about immunotherapy the more convinced I was that this treatment has an incredible amount of value (particularly for melanoma) and the more concerned I became about long-term adverse effects (known as AE's, or adverse events). Some people pointed out that perhaps it was better to have Shane alive with some health problems caused by the treatment. I asked the question, was it possible to treat Shane with immunotherapy without the risk of intense side effects, also known as a low dose protocol? As it turns out, there are two people in the world who are using immunotherapy drugs utilizing this method, doctor in Florida, and Dr. Ralf Kleef in Hungary. The doctor in Florida recommends some fascinating treatments (including off label use of drugs like antibiotics and statins to treat cancer) and we may pay a visit to him at some point, but we really were impressed by Dr. Kleef. We found him to be direct, kind, and funny. He emphasized the gravity of Shane's situation and explained what he would recommend, answered our questions, and made no promises for a cure, though he did promise he would do everything he could to help Shane.

There are a handful of studies that open the door to the possibility that immunotherapy does not have a dose response curve. Simply put, there are two ways to turn on a light switch. You can gently flick it on, or your can WHAM it on with your fist. Both give you the same result, but one requires less energy and less potential pain. Ralf Kleef has shown that you can use a low dose protocol to the same effect as a high dose while significantly lowering the risk of severe adverse events. Not only that, he adds in some unique therapies unavailable anywhere else including: whole body hyperthermia (putting the body in a fever state of 104-107 to activate the immune system), low dose Interleukin-2 (another drug that targets melanoma) and more. He's been using these methods in his clinic for the past six years. The truth is, doctors in Europe have far more freedom to try new techniques, to push the envelope, and create pioneering strategies to help heal the body. As Dr. Kleef's home page state, "The doctor treats, the patient heals."

If you know us well you know we tend to think outside the box and we never mind doing things a bit differently. Case in point, we are members of The Church of Jesus Christ of Latter-Day Saints, we birthed all of our kiddos at home, we try to eat the way people ate 200 years ago (including raw milk, lard, tallow and pastured meat), we rarely visit the doctor. I could go on, but you get the picture, yes? We tried to exclude all fear of judgement as we made our decision because after all, only we can take responsibility for our actions and the outcomes of those decisions. We also removed cost and convenience from the table. Yes, it would be simplest to go to the hospital 15-minutes down the road for conventional treatment. It would be far more comfortable to stay in CA with friends and family all around. But removing fear from the decision (fear of spending inordinate amounts of money, fear of going to a new place, fear of what other might think) and instead focusing on what we truly think/feel/believe/know was a freeing way to come to a conclusion. Ultimately, the choice of which treatment and where was in Shane's hands.

Shane prayed and listened and wrestled with some big thoughts and emotions. Finally, in a beautiful, peaceful, enlightening moment he received an answer for himself. That's his story to tell and I'm sure he'll share more when he feels ready. What I can tell you is the answer he felt, "Go to Hungary." This happened last Wednesday and since that moment we have been in a whirlwind readying ourselves to go (apologies if we haven't answered your calls, texts, emails or MarcoPolos---we plan to once we are safely in Hungary). Tickets were purchased last Friday and we fly tomorrow, accompanied by my intrepid dad, a seasoned world traveler. He will also be helping me care for Shane in Hungary. His presence and assistance will be vital, and I am incredibly grateful that he is willing to put his life on pause for several weeks and go half way around the world to ensure that Shane and I are cared for.

We feel a great deal of peace and hope regarding this choice and are moving forward in faith. We would love to have your prayers for a smooth journey for Shane.

We cry often as we think of all the beautiful prayers you are praying and for the wonderful gifts you have shared. We love you more than we can say!

Note: If you'd like to learn more about Immunotherapy and Dr Kleef, you can watch this excellent, 55-minute documentary.