The world breaks everyone and afterwards many are strong at the broken places. Ernest Hemingway
See my blog post: “I didn’t see it coming.”
Melanie and I were walking around the neighborhood on a Saturday afternoon in mid-January 2018. The four fingers on my left hand went numb. Then my left side, left cheek and left forearm. This wasn’t the first time I had these symptoms since leaving North Memorial Hospital on January 2, 2018.
The first time the symptoms returned happened on January 4, 2018, the second day after my release from the hospital. The fingers on my left hand went numb and our lives changed again.
While in the hospital, the nurses and doctors were adamant: “If you have symptoms, call 911. Time is brain cells.” Should we call 911? I felt resistant. Our insurance company had paid $1,700 to transport me a few miles from Maple Grove hospital to North Memorial hospital on December 29, 2017. I didn’t want to risk my life to save the insurance company money but calling for an ambulance because my fingers went numb for a short time seemed excessive to me.
Melanie called my internist. He counseled us not to go to the ER: “You’ve already been treated for the strokes. The ER can’t do anything. Double your dosage of Lipitor until I see you.” Then my lips went numb. Melanie called the doctor again. He repeated his instructions.
At first, we felt afraid for my life. Some nights I dreamed of numbness on my right side, which would be a new stroke. The dreams were so real; I needed a day to determine the numbness was not real.
One night, I dreamed I was walking down a dark street. Three younger men walked toward me. I knew they would hurt me. I was powerless to stop it. When they got right in front of me, I began to swing at them. I heard a crash and Melanie yelled at me. I woke up and saw I had thrown a punch at the lamp on the bedside table and cleared it of everything.
The transient ischemic attacks (TIAs) continued. I lost trust in my body. I didn’t know how it would react at any time. I was hyper-sensitive to every feeling. I feared TIAs or a stroke when I was away from home. I put my social life on hold, except for family.
After two weeks, my internist said, “What you feel are TIAs. They will not hurt you. You are not having another stroke. I think they will pass in six weeks. Don’t go to the ER unless the symptoms last more than two hours or are on your right side.” We wondered why someone in the Stroke Unit hadn’t warned us before we left the hospital that the symptoms could return. We would have eliminated much fear and anxiety. Then again, maybe they did or my doctor did and I didn’t remember.
We were veteran TIA managers by that Saturday when we were walking. We stopped in a park and sat until the symptoms passed about 45 minutes later and then we walked home.
On the day when I had my last TIA, February 12, 2018, I had my first appointment with the neurologist assigned to me in the hospital. She noticed my moderate voice tremor that had started at age 69–a gift from my father’s genetics. She asked, “Are you nervous?” I replied: “You don’t know the half of it” and I told her of the weeks of unpredictable TIAs, including the one I had that morning.
The neurologist had blood drawn for many blood tests she wanted. She also wanted another MRI. I had the MRI two days later. The next evening, three days after my last TIA, the neurologist called me at 8:30 pm.
Life was about to change again.
She said, “Don’t get nervous.” That really means, “Get real nervous.”
Melanie’s notes from the conversation:
“The MRI from today shows the old infarcts (strokes) and a few new equivocal infarcts. They are not bright like the other strokes, so it’s hard to put them on a timeline. It could be his heart (atrial fibrillation, or Afib) so she wants him to see a cardiologist pronto for longer-term monitoring. She wants to closely monitor him.
She also wants him to go for labs tomorrow and she is going to check for vasculitis [I didn’t have it] and throw in a few more tests. She is putting that order in tonight so we can go at any time. She reiterated to watch for new symptoms and go to the ER if right side, or can’t walk, etc.”
I wrote in my journal that night, “Feeling afraid of having another stroke.”
We were at the lab an hour before the lab technician reported to work so I went to a nearby clinic and had the blood drawn there. After several weeks of appointments, I had the heart monitor implanted into my chest. The monitor can track my heart for AFib for up to three years to pick up what would be a rare and almost invisible AFib in my heart rhythms. Should the monitor detect AFib, my blood thinning medication would be changed from a high dose aspirin and Plavix to a drug better for AFib situations. I predict they will not find AFib.
A week later we saw the neurologist again. She said that one of the blood tests had “spiked” and she would refer me to a hematologist for a consultation. The spike could indicate Multiple Myeloma— cancer I had never heard of. She said the odds were 50%-50% that I had it.
“Multiple myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. In general, when plasma cells become cancerous and grow out of control, this is called multiple myeloma.” —American Cancer Society.
When the Cancer Center at North Memorial didn’t have the referral after several days, Melanie called the neurologist’s office to ask why the referral hadn’t been made. The referral was made within minutes for two weeks later. The two weeks went by slowly.
On March 16, 2018, we walked into the North Memorial Cancer Center (not a pleasant feeling) for my appointment. The hematologist walked into the examination room.
Were our lives about to change dramatically again?
He said, “You don’t have cancer.” I don’t think he had even looked at the lab results. He explained the spike I had can indicate Multiple Myeloma but a large group of people who have the spike don’t have or ever get cancer. However, about 1% cross over to the cancer group each year so I would have to get blood tests every six months.
We walked out of the hematologist’s office relieved. I don’t mind saying that the previous almost three months had scared me! I had been in “fight/flight” mode 24/7. I felt anxiety like I never had before. Over those months, life had humbled me, humiliated me and shown me once again just how little control I had. I was grateful for the outcomes of those events. I didn’t think of myself as “broken,” but I had some cracks in my body and psyche.
When the stroke process began, I decided to be open and honest about what I felt with my doctors and other caregivers. That decision left me vulnerable as many of my feelings were difficult to share: fear, anger, and anxiety. But I was open and honest, as I felt appropriate, as we went along.
I now had an internist (He was always there for me when I needed him), a neurologist, a cardiologist and a hematologist. I got good medical care from them. As for their bedside manners, not so good with one of them. It is important that we feel comfortable with our doctors. We need to trust them and be open with them about ourselves. If we don’t feel comfortable with a doctor, we should make a change.
I had put my life in Melanie’s hands. I shared every dark emotion with her and scared her at times. She made my appointments and took notes, which was invaluable. She fought for me and she loved me.
As the weeks rolled by, I realized Melanie carried a big burden: me. I hated the patient role. I began to keep some things to myself—but not important things. I tried to help around the house more and let her know I appreciated her. A time or two, I shared that I feared she might not want to be married to me: after all, I was wounded. Melanie destroyed those fears.
My children (Becky, Cari, and Mike) and a daughter-in-law (Aubrey) and I drew closer during these months. They were there for me. Natalie, my step-daughter, was a physician’s assistant in a hospital ER and was always there to answer medical questions and offer support.
Dr. Walter Waldinger, Director of the Harvard Study: A 75-year longitudinal study of adult development, said the research showed him that relationships are critical to a happy, healthy and long life. We need at least one good friend. How do we know a good friend? Waldinger said a good friend is a person who is there for you when the going gets tough.
I heard from the extended families of my life, neighbors, and acquaintances and colleagues. I appreciated their notes and calls. A couple of people stand out for me. Each highly empathetic and compassionate and able to share themselves with me. They were there for me throughout my ordeals.
Heide was a good and trusted friend before my strokes and our relationship grew and deepened during the difficult months. She wrote smart and insightful emails. She brought food and visited me at home. She practiced a compassionate “tough love” when I needed it. I found I could share any emotions with her and be met with empathy, understanding, and compassion.
A newer friend, Bill, lived halfway across the country and we communicated periodically. Our exchanges were real. Bill shared himself and his life with me, and he helped me.
And, as all who have had tough times of any kind know, some folks disappoint us. As I thought about that, I turned my eyes inward and I remembered all the people in my life over the years who could have used my support. I took my own inventory and what I saw didn’t always make me proud.
Between January 4, 2018, and March 16, 2018, I had survived 19 TIAs, a possible second stroke and a cancer threat. For the first time in almost three months, I had no outstanding issues or appointments. Maybe now I could focus on my recovery from the strokes.
More to come in future blogs.