by Debbie Lemovitz
In her own words…
There are days in our lives that are momentous to each of us; the day I graduated from nursing school, the day I married, the day my two children were born, the day my mother died, and the day I was diagnosed with brain aneurysms. I was living in Florida for just six months, having moved from Worcester, Massachusetts where I had lived my entire life.
I was diagnosed with brain aneurysms, an incidental finding, on January 6, 2000, at the age of 42. I had not a headache, visual disturbance, or any other symptom, but I did have four brain aneurysms. Being a fighter, a very practical person, and I think, a very intelligent person most of the time, I got on my computer and began researching my condition. Immediately, Massachusetts General Hospital Aneurysm Clinic appeared on my screen, and within seconds, I was on the phone with the Department of Neurosurgery. This was on a Friday, and I was given an appointment with Dr. Bob Carter for the following Thursday, which was the next time he was seeing patients in his office. My husband Scott and I made arrangements to go to Boston (where, coincidentally, our daughter Jessie is a student at Boston University). We left our fourteen-year-old son, Mike, with my dad in Florida and headed for Boston, CT scan films in hand.
Scott, Jessie, and I met with Dr. Carter on January 12, 2000 in his office at Massachusetts General Hospital. He reviewed my films, actually showed us the aneurysms, and discussed the treatment. He spoke to us, not just me, as a family faced with a life threatening illness. He explained the surgery, the risks and benefits, and other treatment options. He asked me to stay in Boston until the following week for an angiogram, which he then explained what that procedure would entail.
It’s difficult for me to describe the kindness and concern that Dr. Carter showed my family and me at the most stressful time. I can only say that he sat and talked with us as if he had known us for years, listening to all of our concerns, answering even the most mundane questions as if I was his only patient and he had nobody else to see. His time was ours for as long as we needed him on that day. As shocking as this entire experience was, my family and I knew we had come to the right place.
We stayed in Massachusetts for the weekend and had dinner with a close friend, Jean, and her husband. They told us that if I wanted to have my surgery in Boston, she would help take care of me. We could stay with them as long as necessary. Scott was free to return home to Florida and Jean would care for me. I was very grateful and moved at the support of our friends and family, so that became our plan for my future surgery. Over the next few days, the angiogram was done, although quite it was quite an imposing procedure. Once again, Dr. Carter reviewed my “list” of questions. Surgery was scheduled for February 11, 2000. I visited my previous primary care physician in Worcester to review the plan, and she prescribed me a tranquilizer, Xanax, for the anxiety I was feeling.
When I returned to Florida, my anxiety increased rapidly. I was back in Florida with no physician for support and trepidation was getting the best of me. I wasn’t able to concentrate, so from the advice of my doctor in Worcester, I increased the dose of Xanax to the point that I slept a lot and had to leave my job. I was afraid to cough, sneeze, move my bowels, or do anything for fear of putting a strain on the blood vessels in my brain. This anxiety became so intense that Scott called Dr. Carter’s office and my surgery was moved up one week to February 4, 2000.
During these few weeks, dealing with my own emotions as well as those of my family, became increasingly difficult. Jessie had little to say. However, she later told me that she did a lot of venting and crying with her friends at school so as not to upset me further. Mike was very quiet at first and then at one point broke down and accused me of not being honest with him. I had told him I wasn’t going to die and in a very emotional outburst, he cried and told me I couldn’t know for sure, so I shouldn’t lie to him. Though we all hoped for the best, I knew he was correct and I had to be prepared for the worst. Mike decided he did not want to see me in the intensive care unit and I reassured him that was okay. He could get reports from Scott and Jessie and see me whenever he felt comfortable. We decided to remove him from school and Scott, Mike, and I traveled to Boston on February 2, 2000 for surgery.
Scott and I discussed complications of surgery on numerous occasions, but the feelings I had at the time on signing my Living Will during my pre-testing appointment were indescribable. At 42 years old, the fact that I needed a Living Will was mind-boggling. I think I went through the weeks before the surgery in a sort of robotic fashion, thinking almost that this was happening to someone else, not to me–like I was the nurse and this person with the aneurysms was my patient.
The day of the surgery arrived. The kids had stayed in Jessie’s apartment, and Scott and I in a hotel the night before surgery. At 6:30 A.M., I arrived at the hospital and was immediately taken to the pre-operation area. I went through the motions of preparing for surgery as I was instructed, finally breaking down and beginning to cry. We are fortunate enough to have a friend, Sarita, who is an anesthesiologist at another hospital in Boston, and she arrived just at this moment. I kissed Scott goodbye and Sarita, dressed in scrubs, held my hand and proceeded with me to the operating room. There was apparently quite an entourage waiting with Scott that day. My dad and his wife had flown up from Florida, as did a cousin of ours, who is a very close friend. My brother, Scott’s brother and his wife, and another close friend from Massachusetts were all there to sit with him for the eight hour wait. Jessie spent the day keeping Mike occupied, taking him all around her campus.
While some of my hospital stay is a blur to me, I remember waking up in the ICU and realizing I was alive. My husband and daughter were with me and I was talking to them. I remember being very thirsty and drinking what seemed like gallons of ginger ale! I was kept very comfortable by the nurses in the ICU, which itself was not what I had imagined. It was a neurological ICU and it was dark and fairly quiet, unlike the noisy ICU’s I had trained in. Jessie thought I looked so well that she got Mike, who you recall did not want to see me in the ICU. Hours after my surgery, my son was also there.
The next couple of days in the hospital were fairly uneventful. I looked like quite a sight, with a black eye and quite a bit of swelling on the right side of my head. The right front side of my head was shaved and I got the nurses to get me some fabric to make a headband. Jessie made ice bags with gloves and the nurses continued to keep me comfortable. I was eating soft foods within a day or so, walking up and down the corridors within two days, and on day four, I was discharged. I was weak, sore, and my appetite was poor. My caregiver, Jean, helped me bathe, encouraged me to eat and move around, made me laugh, and my recovery went very nicely.
Dr. Carter removed my sutures after ten days. Scott and Mike returned to Florida and the next surgery was planned for February 29, 2000. I didn’t realize at first there were different risks for surgery on the left side of my brain, such as loss of speech. Having been through one surgery already, the second would be a little tougher for my body to handle. Scott returned to Boston on February 27, 2000 and surgery number two was completed. Mike remained at home in Florida with my father this time, because he has missed so much school. A fifth aneurysm was found during this surgery, and again, the procedure lasted about eight hours.
Two days after the surgery, at my request, I was discharged again to my friend Jean’s home. My recovery from the second surgery was far more difficult than the first, as the swelling and pain were more intense. I had lost some of the hearing in my right ear. Three weeks after the second surgery, I returned home to Florida accompanied by my in-law, Donna. I was petrified to leave Massachusetts and my doctor, but I knew it was time to go home. I had not seen my son for six weeks and I had been away from home for a long time. The analogy my friend Sarita gave me was that I had survived basically the worst kind of cancer twice but I had lived through it and done well.
Upon returning home, the motto of the Brain Aneurysm Foundation became mine, “slow and steady.” I was able to take short walks, first for about ten minutes around the block and slowly increasing to thirty minutes. If I went out one day, the next day I would rest. I was still feeling anxious but slowly reduced my dose of Xanax. Some days were good, some okay, and some days were horrid. I managed to take it a day at a time, but I was somewhat depressed. I was apprehensive about whether or not all was well and called Dr. Carter to schedule the follow-up angiogram. He had actually wanted to do the angiogram before I went back to Florida, but at the time, I felt too beat up to go through it.
Scott and I returned to Boston on Memorial Day. My angiogram went well, everything was intact, and there were no further aneurysms. Dr. Carter explained to me that is might take a while for the “euphoria” to set in, but I was well and had made it through two life-threatening surgeries with essentially little difficulty. He assured me that my fatigue was normal. Other things like my hearing had almost returned to normal. We discussed depression at length, and he recommended I see a psychiatrist if I needed to, because many aneurysm patients do after their surgery. I had begun to feel somewhat depressed, as sitting around and sleeping during the day was not the norm for me before the aneurysms. It was beginning to get to me. My general feeling was that I had been given a gift from God, my life, and I wasn’t certain what to do with it.
I had yet another list of questions a mile long for Dr. Carter regarding my activities, the lumps on my head, my future follow-ups, etc. He sat patiently and allowed me to ask all my questions; answering each with the same caring and kindness he had showed me throughout the entire process. On occasion, I have emailed him with a question and he had been very prompt to reply.
Being a fighter, on June 28, 2000, just four months after my second surgery, I started a new job. My former position as a registered nurse in a surgical office had been filled out of necessity. This was okay with me, because I was not interested in the forty-five minute commute that job required. My new position was in an office five minutes from home. I was quite nervous when I interviewed for the job, and I didn’t tell anyone about my brain surgery, because I believed there was a stigma attached to brain surgery. The position was for approximately twenty hours per week. Slowly, my hours increased to twenty-four to thirty on alternating weekly schedules. I feel this was one of the most crucial parts in the later stages of my recovery. I have always been a hard worker, and have always enjoyed working, so being at home was bringing me down. I believe that getting out there, as frightening as it was at first (I wasn’t sure I could put in a nine hour day), was one of the best things I could have done for myself and my own well-being. My employer now knows about the surgeries I had.
On November 4, 2000, it was with great pride and a sense of appreciation and humility that I attended the Brain Aneurysm Foundation’s Casino Night 2000. I flew to Boston at Jessie’s request. She had volunteered for the foundation and had been involved in the planning of this wonderful event. I was able to enjoy sipping a glass of wine while speaking with Dr. Carter and my nurses at an event that raised money to educate patients, families, and the public on aneurysm awareness. A number of my friends and family from Massachusetts came to support the Foundation in my honor. We had a memorable evening. We will forever support the Brain Aneurysm Foundation and I feel this is what I was supposed to do with the gift I was given.
©2002 Permission Granted to the Brain Aneurysm Foundation For Use On Website and Other Print Materials