Last week, we concluded with the morning after Brian was first admitted to the hospital. We have been at the hospital for about 12 hours at this point in time. Brian’s family has recently arrived, we have met with the neurologist and Brian’s every 45-minute mini-seizures are under control with an adequate amount of medication. We are awaiting the neurosurgeon.
Aunt JoAnn spots him as he enters the ward and introduces us. Dr. Martin reviews the CT performed the preceding night and convenes with us. His observations: The CT scan was performed in a hurry and without contrast therefore providing very inconclusive results. Yes, there is an abnormality, but until an MRI with and without contrast is administered, even an educated guess is nearly impossible. He asks if we have recently been to another country. Meats in countries without similar U.S standards sometimes cause infections that manifest in the brain. We relay that we have, in fact, been to Jamaica about 3-4 weeks ago. He asks all of Brian’s family including me, to leave the room so he can privately speak to Brian, to which I take offense. Outside his room, Brian’s family and I all begin to hold tight to the possibility of a brain infection. When readmitted to Brian’s room, we all agree the next logical step is an MRI that afternoon and Dr. Martin will be back that evening with results.
I sit on the bed with Brian, holding his hand and simply gazing at him. Brian tells me the questions were sexual history and sexual preference related. I believe AIDS/HIV can manifest in the brain as well. Brian and our families are now educated on what to expect with a brain MRI. Brian will lie on a small table that will enter the MRI machine headfirst. It will be very loud, he must lie very still and it will last about 45-60 minutes.
I call my work and relay the situation. My wonderful co-workers and current department tell me to take as much time as I need. They love me and do not worry about A SINGLE THING while I am away. Luckily, I was to change jobs within the week, so I had recently transitioned most of my duties to others. Brian’s Dad, who also works for Caterpillar, handles all the calls to Brian’s Denver group. They are beyond compassionate about the situation and immediately tell us to not even think about work until we tackle what is in front of us. Throughout the course of the day, Brian and I sleep intermittently since we have been awake for about 26 hours. Every time I leave the room to walk the hallway, I spy another family member of mine in the waiting room. Another aunt, my parents, cousins, uncles, etc. The support is overwhelming. My brother, Kevin, and his then due-any-day-wife Lisa, call and tell us they are getting induced on Tuesday, May 20, 1997 so they can come to St. Louis with the baby that weekend.
Brian goes to his first MRI. He is transported via wheelchair, which is protocol. He is taken into the radiology MRI room. They explain more of the procedure and allow me to witness until time for the actual testing. I wait in the radiology waiting room. An hour later, Brian is wheeled out, smiles, “Hey, babe,” at me and we go back to the neurological ward for results. The waiting room is even more filled with aunts, uncles, cousins, parents, and a growing number of our friends. We are all anxiously awaiting the results, hoping for an easily treatable infection.
Dr. Martin returns with a rather unexpressive look that evening. The room is full of family. Brian and I are sitting in his hospital bed. Dr. Martin looks tentatively around the room as asks if we want the results alone or like…this. This is fine, we reply. He states that the MRI shows a more organized mass in Brian brain, not resembling the characteristics of an infection, but more resembling a tumor. The location of the mass makes it inoperable without considerable risk to Brian’s functions – speech, right side mobility and sensations. It would be impossible to determine for sure exactly what the mass was or what grade or type, if it is a tumor, without a biopsy to determine next steps. We schedule for Thursday, May 22. Pathology will review the results and we will learn those on Friday, May 23. He asks if we have any questions. I don’t remember, but I am sure his parents ask questions. I just remember hating him. Hating him and everything he was telling me. My experiences with cancer to this point have been the premature loss of two aunts who were both survived by cousins my age. I hate this doctor for telling me my husband has just been issued a death sentence. I know no better. I sob. Loudly. Brian quietly weeps and holds me tight. I smother his face with kisses. The room empties. I can hear murmuring and sniffles from the hallway. I begin to wail, “no, no, no” over and over again. Brian’s mom, Jan, returns after a few minutes to my obnoxiously loud sobs, sits quietly beside the bed, holds her son’s hand, rubs my back and says softly, “We have to fight. You can do this, Brian.” I wail for a little longer, utter some obscenities about this doctor who I claim knows nothing, look at Jan whom I can see is deeply pained beyond words and see something behind her eyes that makes me stop crying – something that causes me to stand firm and hope. I realize at that moment my job is to make sure Brian feels the same. We lie in that bed holding each other, unshowered, uncertain, frightened and confused and say nothing for a long time.
The next few days are densely sprinkled with large visits from our family and friends. There is never an evening where a seat remains in the main waiting area of the neurological ward. I never leave Brian’s side. I have my family bring me my toiletries and clothes. I sit on Brian’s lap if a chair is unavailable while we visit with the ever-growing number of well-wishers and welcome distractions. We are often politely told if we can’t keep it down, we should go downstairs to the main lobby of the hospital. During these visits, several people bring us materials about recent brain tumor research, brain tumor treatments, brain tumor pathology types, homeopathic healing, etc. It makes my mind hurt to look at it all. Jan takes over, investigates, deciphers and analyzes. Brian and I are faced with many excruciating decisions. The first and most pressing is this: What do we do about our pending house purchase in Denver with our closing scheduled for next week? We realize we may be unable to close that day and decide that buying a house at this volatile time of our lives is probably ill advised. The next decision we must face is whether to continue with Brian’s job in Denver or try to find an alternate job in Peoria, IL, so we can be close to our families and support structure. While I have lived in Denver for two years and have many decently established friendships, Brian does not. We have no family within 800 miles. We decide not to act on this decision until we know more, but after hours of pain-staking deliberation, Brian and I decide I need to call the seller of our house and tell him to re-list the house due to our current situation. He is a friend and is much more concerned about Brian than the house (at least on the phone). When I hang the phone, a cloud of despair envelopes Brian and me, nothing feels more wrong and we cry together again. Brian apologizes to me for the ten thousandth time that week claming I don’t deserve this. I ask him which part of “in sickness and in health” he didn’t understand.
A close friend from Denver, Beverly, shares our saga with a close friend of hers. Beverly’s friend works with a man, Al, who has a young 20’s son with a brain tumor. Al is willing to talk to us remembering only too well the mass chaos and flood of information accompanying the initial diagnosis. We speak with Al and he gives us a plethora of local Denver doctor information, countrywide specialists and many other valuable resources. He proves to be one of the best contacts thus far giving immeasurable practical, usable knowledge.
Anyone who visits us this week in the hospital witnesses our every day deep anguish, pain, despair and confusion. A few of my relatives begin to minister to us, slowly. Brian and I are both Catholic at this time and searching desperately for deeper meaning into this ordeal. Where is our God? What does it mean when someone says they are going to pray for you? Somehow reciting a few Our Fathers doesn’t seem to be sufficient for us. The most instrumental to us during this time are cousin Rhonda and my ever-teaching Aunt Jane. Rhonda and Jane (separately) begin to share stories of their own internal healings, of their own peace finding, soul-searching, etc. They share of Jesus’ love for all aspects of our lives including our physical well-being. They bring me a Bible and some Bible promise books. Rhonda writes out some versus on index cards directly related to physical healing and encourages me, if I am comfortable, to read them quietly with Brian whenever. She shares with me, gradually, all week of how Jesus truly loves me and while this may all not make sense now, He has a plan and a purpose in our lives and it simply isn’t what we had thought. I am resistant to this pattern of illogic because how could what was starting to be our fairy-tale life not be part of His plan? Searching desperately for any answers, I take in, gradually, all information from Aunt Jane, cousin Rhonda and many other amazing family, friends, and friends of family and friends that week. I pray for Brian a bit differently, reciting these Bible versus and trying with all I have to believe them, too. Believing them proves to be much more daunting than reciting them. I am assured that is acceptable and expected at first. This is the first major step to my relationship with Christ today. I will share more and more with Brian over the next few weeks, but we both know his anger and shock at the current situation does not allow his heart to be open to this fully yet.
The day of the biopsy arrives. Brian will have another MRI so the surgeon can map exactly where his incision, drilling, and extraction will be. The surgeon will give Brian a local anesthesia in his head so he cannot feel it, but Brian will be awake. This is our first experience with realizing the actual brain has no sensory feeling. The surgeon will then drill a hole into Brian skull and extract different points in the suspected tumor. The samples will be sent to pathology and the results will be the next day. While sounding horrific, it is actually a relatively simple procedure, tolerated well and performed quickly. Brian is wheeled away again to get a literal “hole in his head.”
The recovery is simple and uneventful. Brian is in good spirits and animated as he tells us how surreal it was to hear a drill entering his head, but feeling none of it. Everyone that continues to visit us this night is amazed at our “strength,” our love and our attitude. I can’t explain where it was coming from. I didn’t understand it. There is an overwhelming amount of peace surrounding us. One cousin told me as she came to visit, she was shaking nervous as she ascended in the elevator, not knowing what to say or expect. As the elevator doors opened, she said it was as if Jesus himself greeted her. She wasn’t really a strong Christian at this point in her life, but she said she knew the Holy Spirit was in that area of the hospital. She said there was such peace she just knew no matter what the outcome of this biopsy was, Brian was truly in God’s hands. I take comfort in this.
The next day the surgeon returns with the results of the biopsy. Once again the room is full of visitors. Due to the awkward bearing of the bad news earlier in the week with the entire family present, Brian and I choose to have the results given to us alone and the surgeon repeat the news to everyone else in the waiting area. The result of the 3 samples taken and analyzed are an Anaplastic Astrocytoma showing Grade III characteristics on a scale of I-IV, with IV being the worst. Dr. Martin encourages a second surgeon opinion to determine operability options, as he is unwilling to operate as previously discussed. He suggests immediately speaking to oncologists and radiation oncologists to discuss radiation and chemotherapy. He explains that while anything was possible, someone with a grade III Anaplastic Astrocytoma typically lives 3-5 years. We have been married a month and Brian is 24 years old.
We are discharged; despondent and devastated. However, upon our departure from the hospital, I feel an indescribable peace and an illogical amount of comfort. I don’t understand it again.
So, what miracles? What good comes from this? I find myself asking this lots, even more so today with Brian’s recurrence last year. However, the way in which God starts to shape our lives is amazing. As I stated last week, humbled to our knees desperately searching for answers and feeling so vulnerable, I opened my heart to God in a new way. I prayed differently. Brian began to do so as well. There were many other grace notes this week. For example, the mere fact that this tumor was revealed to us at this time is truly miraculous. Mere days before, my sister was graduating from college and only one month prior was our wedding. This could have overshadowed either of those events. Even more, this could have surfaced weeks before we were married and I don’t know how our lives would have progressed from there. In God’s timing, we were married and I had all the rights to be by Brian’s side helping him through this as his number one companion. I would not have wanted it any other way. Also, if this had surfaced 10 hours later, Brian would have been on a plane to Montana on a business trip alone. As it occurred, we were in St. Louis – a major metropolis. We had countless friends and family nearby. Brian’s family was only a few hours away and was able to be present for the entire ordeal. The timing was truly miraculous. Another miracle is that God has blessed my mom, Karen, with the amazing gift of hospitality. She opened her home to Brian’s family, feeding whoever would stop by. It occupied her and made everyone feel comfortable and unimposing. Another grace note was Brian and I were both recently transitioning job responsibilities and were not leaving our organizations with large voids during our sudden absence. A final miracle was the birth of Alexis Nicole, our little (now nearly 11-year-old) Lexie. This beautiful perfect creation of God reminding us He does not make mistakes. Kevin, and his then-wife Lisa asked Brian and I to be Lexie’s godparents to always have a wonderful event to remember during this very trying time. We felt so honored and blessed.