As a Missionary in Spain I suffer from a brain tumour
by Dennis and Nanette
All the passages below are taken from Pablo Martinez’s book “A Thorn in the Flesh,” published in 2007.
I have been a Type 1 diabetic since 1957, when I was almost five years old. They diagnosed my brain tumour in Madrid in May 1999. My wife, Nanette, and I had been serving as missionaries in Spain since 1982. It had been an uphill battle for us, with my diabetes, one daughter with severe asthma, another with Attention Deficit Disorder, and a car accident in 1985 that left Nanette with improperly treated neck injuries, resulting in chronic pain. And that was just the physical portion of the battle!
In the three years prior to my tumour, Nanette's cervical spine had been operated on three times in an attempt to correct the damage and relieve her pain. After each bout of surgery she spent several months in a neck brace, twenty-four hours a day, and had to sleep only face up and not bend over, lean, turn her head, twist, etc., while on her feet. She became very good at picking things up with her toes! When I called her at our apartment in Madrid from what we thought was an appointment to check problems with my vision and said, `Hi, hon, I have a brain tumour,' she thought I was kidding.
`What? That's really not funny.' Not funny at all, but true.
That was Monday; the specialist wanted to operate on my brain on Wednesday. Our experience with medical care in Spain being what it was, we took the MRI films of my brain to our family doctor the following day for his advice. The tumour was plainly visible even to the uneducated eye. He told us to be back in America and in an operating theatre within ten days. Our youngest daughter was in high school in Madrid.
`How about a month? Our daughter needs to finish more of the school year.'
`No, ten days,' said the doctor.
‘Well, could it be two weeks, then?'
`I don't think you understand. You have ten days and no more. Dennis must be in surgery having the tumour removed no later than that.'
We returned to our apartment in a daze, packed our suitcases, called family in America and friends in Madrid, and asked my mom to find us a neurosurgeon who could do the surgery in ten days. Our older daughter was already in college in California and our younger daughter was pulled out of school in Madrid to return to California with us.
Nanette and I had been singing and performing together since 1973, and at the time of the tumour diagnosis we were working on our fourth recording. Our good friend, sound engineer and producer, Adolfo, also worked part-time for Delta Airlines. He put us on the stand-by list immediately. By Thursday we were at the airport boarding a plane, with two friends holding my elbows, carrying me to the plane. The doctor was right: I was deteriorating so quickly that I couldn't even get to the plane by myself. There was much discussion among the crew and with Adolfo but we didn't pay that much attention. We were just relieved that all three of us and our dog were on that plane and bound for a hospital in California. Later on, Adolfo told us that they had not been going to allow us to depart on the flight. We had no letter from the doctor and, indeed, I would have been deemed too ill to fly. Adolfo told them that I was just very nervous about the flight! Not untrue, but not the whole truth, and we were glad we didn't find out about it until afterwards.
On Friday afternoon, we, with our mothers, Nanette's sister and our younger daughter, April, were in the neurosurgeon's office in Newport Beach. My mom had seen his name on his office door at the hospital and called for an appointment, explaining our situation. He spent over six hours explaining everything about the tumour and the surgery. He answered all our questions. He made drawings of everything he was going to do. He was meticulous, compassionate and straightforward---an excellent physician in every sense. He took only patients he wanted to take, and he would take me. He also promised to take in payment whatever our medical insurance gave him, and to make sure that the hospital did the same.
On exactly the tenth day, I was in the operating theatre at St Joseph's Hospital for ten hours while the neurosurgeon carefully removed the tumour from my brain. The lobby was full of friends and family accompanying Nanette, Megan and April and praying with them all day. When the surgery was finished, Dr Malkasian came out to the lobby and spent another hour and a half explaining everything to them, with drawings, and answering everyone's questions. Then he took Nanette's hand and said, `Let's go see your husband.' He did not know at that point whether I would be able to talk or swallow after the surgery. When they leaned over me and I said, `Hi, hon,' he was thrilled. My right side was paralysed but my words were still intelligible.
Sixteen days in intensive care followed, with intravenous feeding to keep my blood sugar stable. Nanette lived between my bedside and the waiting room, where she attended to the visitors who came to check on me. Friends came by and took her for a meal or brought food to her, knowing she wouldn't eat otherwise. A piece was missing from the back of my skull and a drain came out of the top of my head. Tubes stuck out of my neck and arms and my face drooped like that of a person who had had a stroke. My right arm and leg were useless, hanging like dead branches.
When I was released from hospital I left on a Zimmer frame. We rented a house close by from loving friends, and for more than six weeks I had to return on weekdays to the hospital for radiation treatment. This made me sick and my blood sugar levels were wildly unstable. I still had the drain in my head and they were monitoring the amount of swelling inside my brain. The strain on Nanette was incredible. Imagine that your spouse's brain is traumatized, he is diabetic, vomiting and convulsing, and will be in an irreversible coma if you can't get sugar into his bloodstream. And you have to get him to his daily radiation treatment, which is what is causing this and will make it happen all over again tomorrow.
This part of the journey was agonizing. Only the grace of God sustained us through the prayers of family and friends. When it was over, I learned to walk without the Zimmer, although with a limp and a shuffle, and I learned to write with my left hand, and even to draw and paint a little again. I couldn't sing or play musical instruments any more.
When Megan got married a year later, I walked her down the aisle and gave her away. As we stood in the same doorway in which Nanette had stood with her dad twenty-five years earlier, ready to walk down the aisle towards the groom, the wedding guests' eyes filled with tears as they watched this clumsy dad cross the sanctuary threshold with the beautiful bride on his lame arm. They were witnessing in that moment the answer to prayer, theirs and mine, that I would live long enough to walk my daughters down the aisle at their weddings. I performed the ceremony, including giving Eric and Megan communion in their first act as husband and wife. What a profoundly joyful day it was! The bride and groom surprised us at the reception with a twenty-fifth anniversary cake and we were happy and grateful to be able to celebrate on their wedding day. They cut their cake according to the Spanish tradition, with a sword brought from Spain. Nanette had added her own touch by having the blade engraved with their names and wedding date.
A few months later, we were ecstatic when Dr Malkasian told us that we could return to Spain. He had given me a life expectancy of four to six years, since my type of brain tumour (ependymoma) is 100% recurring. April would be able to return to her school in Madrid for her senior year and graduate with her class. Megan and Eric were settling into married life. Nanette and I could go back to our life and ministry in Spain for as long as I could cope. God was merciful and allowed us to discover little by little how idealistic that was.
The part of my ministry that I did on the computer I could still manage with one finger of my left hand. However, the seminary in Madrid where I taught classes decided that they did not want me to continue. Nanette and I disagreed with this decision and took it up with the founder, with whom we were long-time friends and collaborators in ministry. We felt that the students had deeper lessons to learn about Christian living from a professor who had persevered in the face of trials and come back to teach them, giving out of his store of knowledge. We were grieved that the seminary did not agree and considered my changed physical appearance too great a distraction. Nanette was angry, feeling that this communicated to the students a message that was in direct opposition to what true, mature Christian values should be. However, the decision was made.
We returned to the recording studio with the goal of finishing the CD that had been started three years earlier. Nanette shuffled the songs and arrangements around in order to preserve the guitar and vocal tracks that I had recorded. As Adolfo is also a first-class guitarist, he added guitar tracks to fill in where I had left off.
We also returned to our beloved church and to Madrid Gospel Choir. We were welcomed back to both with open, loving arms. I couldn't do much but it seemed that just showing up encouraged people. I was the mainstay of the tenor section of the choir before and I could barely open my mouth now, but they loved to have me there with them. They made sure I got up and down the risers and kept me from falling off when we were all swaying or jumping to the beat. We all had a good laugh in one song where we had to turn right round together. I made it back round to face the front a long time after everyone else, but I made it.
During the ensuing months it became clear to us that when April graduated from high school the best thing for us to do, indeed what God would have us do, would be to return to America and be near our family for whatever earthly time God gave me. Megan and Eric were in Southern California, April would be there, our parents were there; Nanette's sister and our home church were there. We knew it was the right thing to do but it was also the hardest thing to do. The CD continued to evolve and became our farewell to Spain. Nanette cried right through the last six months.
We had to limit our cargo to what would fit in a forty-foot container and our suitcases. Much of our furniture was sold but we could not part from antiques we had bought in Spain, so they went into the container. Amazingly, the shipment of CDs arrived from the factory the day the container arrived at our house to be loaded. We left several boxes out for distribution in Spain before we left and the rest were sent with our belongings. The next Sunday we presented the CD at our church. People took copies and asked Nanette to sign them. She was there for hours, signing CDs with tears streaming down her face. This was her goodbye to our church, to the language, culture and ministry in which we had invested our lives, and to our beloved Spanish friends.
Part of the plan in returning to California was for Nanette to find a job and a home there before I got to a critical stage at which it would have to be done under much more stressful conditions. She had returned to college and finished her bachelor's degree during the years that we were going through our surgeries. God provided her job and the house and I was able to claim disability allowance. Every missionary has to discern for him- or herself what to do in debilitating circumstances, but when it became clear that we could not continue our ministry work full-time, we were convinced that it was not right for us to live off the financial support of our donors. Even so, our team is so amazing that we still have a small group of people who continue to support us faithfully every month.
In 2002 Megan and Eric had our first grandchild, John Mark, and we were crazy about him. I had lived long enough to become a grandfather!
Having struggled through tumultuous high-school years, April made unwise choices. She was angry with God and punished herself and those of us who loved her by her actions. She became pregnant by a young man who was not a Christian and who did not want the responsibility of fatherhood. We were heartbroken. Our second grandson was born in 2003 and our grief at giving him up was outweighed only by our gratitude that April chose to give him in adoption to a wonderful Christian couple who could not have children. This way, Jaden would have a father and a mother to raise him and give him a stable Christian home. His adoptive parents would keep in touch with April and us; we would know how he was and see him from time to time. We watched April place her baby boy in their arms and whisper through her tears, `I'm doing this because I love you.' It was the most generous and unselfish act we had ever witnessed.
Marian Rose was born to Eric and Megan in 2004, our first granddaughter. She was round all over with black hair and eyes. She captivated us from the first moment we saw her and I suppose will always have us wrapped round her little finger.
By the spring of 2005, my six years were up. People asked me how I was, and my happy, surprised answer was always, `I'm still here!' I thought I would go from the operating table to heaven, then from the four-year point to heaven, sometime between four and six years to heaven, but still to be here after the doctor said I'd be gone ...!
Nanette and I had been attending the Hispanic congregation at our home church for a couple of years and participating in the worship team. I had got one finger of my right hand to the point at which I could play one string of the bass. That's all you need for bass strings. My left hand could play on the neck just fine. I couldn't play as well as before but the worship team valued me as a member and an example. Nanette sang, played keyboards and taught vocals.
I volunteered in our church office every Wednesday morning, caring for people who came in to ask for help. The church also had a list of people with cancer who had asked for prayer. I started calling everyone on the list every Wednesday. If they didn't answer the phone I left a message so they knew someone had called and was praying for them. We also had a group that met in one of the cancer patients' homes each week to talk, pray and share information.
People make odd assumptions about cancer patients. Nanette and I learned to smile and nod graciously in response to shallow, ignorant comments. We talked together about how interesting it was that I had terminal and chronic degenerative illnesses with no pain, while she had not known a pain-free day or night since September 2005, and how all that affected us. Praying together became the most treasured part of our marriage.
I was approached by a friend of a friend with an online school and asked to teach apologetics online in Spain. I was happy to agree to do that since it was one of my areas of expertise in ministry. I had done a lot of work on cults while in Spain and produced resources in Spanish, of which there had been a woeful lack for Spanish-speaking Christians all over the world. With an open door to focus on it again, I want to get as much done as possible in the time I have left.
The autumn of 2005 brought the fulfilment of another dream. I walked April to her groom's side at Laguna Beach. Josh was in the Navy and home on leave, deploying for Bahrain in two weeks. We were all in wartime wedding mode. Josh was wearing his dress blues. It was an intimate family group gathered for a very meaningful ceremony. This was the man God had intended for April, ever since they had met in junior high. They had reconnected in the spring of 2005, fallen in love again as adults, and wanted God's blessing as they sealed their marriage covenant before Josh left for the Middle East. It was a happy, happy day, complete with another wedding cake to cut with the Spanish sword.
Josh came home on leave six months later. He was able to stay for a month before returning to duty in Bahrain. He and April conceived our fourth grandchild during that month.
With my annual MRI scan that summer came the news that I had a new tumour in another part of my brain and new lesions in my spine. The brain tumour was so close to the optic nerves that surgery wasn't possible. We opted for stereotactic radiation on that tumour and radiation of the entire spinal cord for the others. Treatment had to be done at the University of California, Los Angeles (UCLA), where they had the machine for the stereotactic radiation and the skill to use it. Depending on traffic, that meant driving for at least an hour and a half each way every day. I couldn't drive myself because the treatment made me sick, dizzy and unable to stand. It knocked me off my feet. Family and friends formed teams to drive me back and forth as Nanette couldn't afford to take that much time off work. Megan was there when I was brought home to make sure I made it to the bed to lie down. She kept an eye on me until Nanette got home from work. My diabetes had to be taken into consideration: if I got sick and my blood sugar plummeted, one person had to be able to take emergency care of that while the other one handled the car. People took time off work to drive me. They helped pay for the fuel for our trips. Our church paid for fuel and for us to stay for several weeks at a residence near UCLA in order to relieve some of the stress of the whole ordeal. Nanette did stay for one week with me there and April, with Josh far away, stayed for a couple of weeks. She was a tremendous help as she cared for me, and sometimes, with her pregnancy, we were just nauseous and exhausted together! We ate an awful lot of soup. My skin was burned, my throat was raw, and I was very wobbly on my feet and thinner than when I had been a skinny teenager. It was a long, long two months. My family suffered watching me suffer and was tense with worry about my diabetes. What a relief when the treatment was over! It was weeks before I could eat normally again.
In the meantime, Josh and April got their orders for his next posting. They would be moving together to the Pacific Missile Range in Kauai. Lydia Faith would probably be born in Hawaii! My next goal was to meet her. We had to pray Josh safely home and help April to get ready to move with him. He got home just six days before they left for Kauai. Three weeks after they arrived, Lydia was born. Nanette flew over the day before and was there to keep her unbroken record of not missing the labour and delivery of any of her grandchildren. April gave birth quickly and the baby was perfect. In a couple of weeks, I will be travelling to Kauai to meet Lydia and visit Josh and April.
My follow-up MRI scan after the radiation treatment shows that all the tumours that were treated have remained the same and new ones have shown up on my lumbar spine. This is not good news. Surgery and radiation are no longer options. Chemotherapy is an option, with about a 5-10% effectiveness rate on this type of cancer cell. We are meeting Dr Malkasian next week to discuss whether, because of my diabetes, going through the treatment is worth it. I trust God. He has granted my desires to see my girls married, hold my grandchildren, and even minister in unexpected ways. I would like to live longer, but, whatever God chooses, may his will be done. [177-184]