As we left the hospital that beautiful spring day, Brian was down-cast, disappointed and pensive. I had an overwhelming sense of peace and hope and quietly, but assuredly comforted him and supported him with gestures, kisses, smiles, and nods. We left the hospital and headed to my parent’s house. My brother and his family had baby Lexie on May 20, and came to St. Louis just a few days later so we could meet the baby and they could see us. Something about being diagnosed with something so serious gives those that love you an overwhelming desire to be NEAR you. SEVERAL members of my family, Brian’s family, and our friends were at my mom’s that day and over the course of the next day spending time with us, encouraging us and trying to learn more about our situation.
Jan, Brian’s mom, and I started to discuss next steps. We had an appointment with another more skilled brain surgeon the following week to discuss surgery options since the first surgeon had determined he was not willing to risk Brian’s basic functions for surgery. We had learned through a friend of a friend, Al, of the MD Anderson Cancer Center in Houston, Texas as being a world leader in brain tumor treatment. We got copies of all Brian’s reports and scans and decided to meet with MD Anderson after this surgeon in St. Louis. We made an appointment for as soon as reasonably possible.
There was a large looming problem over Brian and me. We had to decide what to do about our newlywed future. We had jobs in Denver. We were in St. Louis this week because of the time at which the brain tumor decided to show up. We had a contract on a house in Denver from which we had just two days prior decided to withdraw. We were starting on a medical journey about which we knew little or nothing. We didn’t know what to do next. We were of the notion that logically, we should see if Brian could get a transfer to a different job in Peoria and I would look for employment in Peoria. This way, we could be close to our families for support and Brian could keep his job for now. However, this did not feel right to Brian and me. Just one week earlier, we were in Denver giddy with excitement over our first house, our jobs and our life together ahead. We had lived together not even two weeks when this all began.
Our parents could see our anguish over our decisions. As much as they wanted us close to them to be available for our upcoming battles, they also knew we needed to make this decision on our own. They encouraged to travel back to Denver for the weekend (it was Memorial Day) to visit with our friends, go to the mountains and get away for a few days until Brian’s first surgeon appointment the next week. We did. We flew back to Denver for a few days to think, possibly say goodbye to our friends to an extent, etc. While there, Brian and I went to church, went to the mountains, prayed, thought, talked, ate, cried, and naturally, visited the house we were not-meant-to-buy-afterall. Nothing felt right. Everything in both us said to STAY HERE. This is OUR LIFE together now. We left our parents when we graduated college, but even more-so when we married just one month prior. When we called our parents to tell them our decision to continue with our move to Denver and our jobs in Denver, we could hear their concern in their voices (as a parent now, believe me, I can understand), but we KNEW this was the right thing for us. We knew we had a future together if we just trusted that our lives would go on and not make drastic changes for what MIGHT BE. Making those drastic changes for what MIGHT BE felt like we were willing those things to BECOME realities in our lives. Brian and I felt bonded and hopeful and powerful together in this decision. We called the seller of our house, who was also a friend, and we continued with our contract. We would close on the house when we returned from our trip BACK to St. Louis to meet with the surgeon.
The visit with the surgeon was disheartening again. The surgeon agreed the risks to Brian’s functions – right side mobility, right side sensations and speech – were too great without first trying other treatments (radiation, chemotherapy, etc.) This was the second time we heard “inoperable brain tumor.” Our next step now, was going back to Denver to close on our house, move into our house, visit with brain tumor team in Denver, work a few days, then head to MD Anderson Cancer Center in Houston, Texas for another surgical opinion and a treatment plan. Our plan was to get the regimen from MD Anderson and have the Denver team administer the treatment. I love looking back on “our plans” knowing God had other plans.
Moving into our house was wonderful. It was so exciting and rewarding to know we owned (5%) the house and that the payments were towards something in which we could take pride. Owning a home is a great sense of accomplishment in one’s life.
In early June, Brian’s mom, Jan, flew to Denver to meet the neuro-oncologist with us in Denver. Jan was always fantastic for asking questions I hadn’t and didn’t even know to consider. Jan was currently the primary caregiver for Brian’s dad, Ed, who was battling malignant melanoma at the same time. He was in the ending stages of his treatment and his prognosis was looking very promising. Having recently been involved in all that accompanies cancer, she was a great mentor and teacher. While we were waiting in the oncologist office for our first consultation, she casually asked me if we were considering a family some day. A bit taken aback because of what was immediately in front of us, I said, probably, but not for years. She said while all chemos were different, she did know that some could make you sterile and thought maybe we would want to ask this doctor about the risk of this and determine if we should possibly freeze/bank some sperm for a future family. We asked that day. We were told banking for a future family was a good recommendation if that was something we thought we wanted, but also warned that with the pathology of Brian’s tumor, living more than 10 years was not likely. We said, we would no longer like to hear statistics. (Here’s some statistics today: That was 10 years and 10 months and 2 children ago. I was 25. Brian was 24.)
Next, we headed to MD Anderson Cancer Center with Jan. The clinic was top notch. The accommodations were incredible and the service at the hospital was unrivaled. We were escorted wherever we went. We were explained in terms relevant to us and made to feel comfortable and relaxed. We met with the team and learned, once again, they deemed the tumor to be “inoperable.” They recommended starting with radiation treatments in Denver and coming back after those for a chemotherapy plan.
We left Houston for Denver and Jan left for Illinois. Brian and I met the Denver radiation oncologist, Dr. Weil. He was fantastic in his explanation of the radiation treatment. However, he threw us for a loop when he stated he would like to send the scans, pathology slides, and all our records to ANOTHER surgeon in Sacramento. No, thanks, we said, we have already met with 3 surgeons who deemed it inoperable and suggested radiation first. He said he would like to just see what this surgeon has to say because if they could debulk the tumor at all, radiation would be much more concentrated and effective. Dr. Weil had worked with this surgeon, Dr. Michael Edwards, years back at the University of California, San Francisco Medical Center and had seen Dr. Edwards do amazing things when other surgeons were not willing. Amazing things with amazing results without harming his patients. His patients were primarily children as Dr. Edwards was a pediatric brain surgeon. We agreed to send our information there expecting the same result again. On July 4, 1997, Dr. Edwards called to state he wanted to try the surgery. He would not debulk, but rather, he would place some electrodes on Brian’s brain through a surgery, wait a day or two, and have a neurologist with whom he partnered test the functions of the different areas of Brian’s brain to determine IF Brian’s functions would, in fact, be affected by an incision, and THEN debulk it if was safe. The weird thing about the brain is that they don’t know EXACTLY what area does what. They know that if you are right handed, your speech center is usually on the left side of your brain, but where exactly. It is not like “this muscle does this, this nerve does this and this ligament controls this” as with the rest of your anatomy. He wanted us there for surgery in a week or so. Dr. Edwards was an amazing man who called us himself on a holiday. He explained in detail what to expect and answered any and all questions for us right there. He was gentle, kind, compassionate and attentive. After consulting with our insurance and our parents, we agreed to try this surgery.
Through all of this month of June, Brian worked and traveled a bit. He researched whatever he could about brain tumors, only to determine that statistically “it was as unlikely for him to have this stupid thing as it was for him to survive it”. He stopped researching about brain tumors in general and researched things like meditation, acupuncture, diet, herbs, etc. Brian began to pray more and more and we prayed together a lot. Brian started to see an acupuncturist and change his diet some while exercising a lot. However, as I learned more about some of the things Brian was doing, I was a bit scared of the ‘earthly’ aspect of them versus the ‘God’ aspect of them. A few close friends and relatives mentored me on this and said to just be careful of what we invite into our lives. If what we are inviting does not come from God, where is it coming from? I spoke to Brian about this and he questioned me thoroughly. He asked me if I truly thought there was only one God and Jesus was his son and our savior. YES, I said. Brian says I was so convicted in this discussion, it was the first time he really thought hard about accepting this as a part of his life and asked God that night to open his mind about this if this was in fact truth. He says within days he was also convicted that God is the one true God, Jesus is his son who died for us and Jesus is our savior. Brian then spoke to his acupuncturist. Brian explained that he only wanted to invite God into his life and his acupuncturist agreed. Brian continued to have his treatments inviting God to heal him.
In summary this week, I would like to recap our miracles. First of all, our parents were the most amazing, supportive ROCK SOLID people we could have asked for. They were just THERE and that is what we needed. They were supportive and excited for our decision to move to Denver after all. While leery in their own minds, they kept it there. Having recently been through initial diagnosis, surgeries, chemotherapies, etc, Jan and Ed, Brian’s parents, were very well versed in asking questions, getting second opinions, getting copies of reports, etc, without freaking out at every glitch that occurs. And there are A LOT of glitches that occur. Jan was simply amazing through that first month. It allowed Brian and I to bond, to research, to work, to live, to move into our house while she was taking care of details I didn’t know existed. Details I was not yet ready to handle. Moving to Denver was one of the first decisions for which Brian and I truly sought God’s council and felt VERY guided to our conclusion. This decision led us to some of the best medical contacts we could have encountered. We would not have crossed paths with Dr. Edwards if not for the Denver connections. The mountains and weather provided Brian and me with continual inspiration and outlets. Our jobs were beyond understanding about our situation, giving us the necessary time off to handle the appointments and consultations. If we had moved to Peoria, I would have had no vacation and a new employer to try to reason with regarding time off. It would not have fared well. Also, by living in Denver and working for Caterpillar, Brian was considered out of network for Cat insurance. This was the biggest blessing of all. Being in this situation, it did not matter where we went for treatment since all of the care was out of Central Illinois anyway. If we had lived in Peoria, we would have been in the Caterpillar network and to be considered for any treatment or appointments out of Central Illinois would have taken a lot of exceptions, time and paperwork and may not have been accepted. We were seeing specialists all over the country. Our first decision for which we heart-fully sought God’s direction, our move to Denver, was the most blessed decision we ever made thus far.
The second decision for which we diligently sought God’s council was whether or not to have this surgery performed in Sacramento by Dr. Edwards. We felt very guided to this surgery again by God. God did not speak to us directly with a booming voice from above or through a vision or a dream. Rather, as we prayed for guidance, we would get a phone call from someone stating they wanted to give us their frequent flyer miles for the trip, or a random email from someone stating they had the most amazing experience with Dr. Edwards. This was before blogs and before the Internet was quite as accessible and informative as it is today. We would get a phone call from a family member stating they were praying for us and felt very confident that this decision was good for us. I believe that was God’s voice confirming to us this was the path he wanted us to take. Through that experience, we learned to look for God’s hand in our decisions in unexpected ways.
Meeting Dr. Edwards and the first surgery.