August 16, 1992
Our Marriage— the Early Years
Our wedding was planned for October of 1992, but we decided to "elope'. After some persuasion, we convinced Fr. Pat Lee to perform the ceremony at Immaculate Conception parish one Sunday afternoon in August. Since we had already attended five Masses that weekend (and Father Pat had celebrated all of them), we decided on just a simple wedding ceremony. Jennie was Maid of Honor and Mary Jameyfield (the Music Minister from I.C.) was best "man" We think we're really married, but knowing Father Pat, our marriage certificate may still be sitting in an unidentified pile on his desk.
I called my mother after the wedding to let her know what we had done. She was surprised, but pleased that I had married "James Kirk" (Captain of the Star ship Enterprise). I think my mother was just holding on, waiting to see that I was taken care of.
Jim's family found out when we went to Millie and Bob's that afternoon for an engagement party— we got to tell them that we were past the engagement stage. They were surprised, too.
And so we got on with the business of living—we rented an apartment on Wieland Street, one block away from I.C.—Jim and I were co sacristans. Jim continued to work in photography at GAP, and I was with the Archdiocese. Jennie was attending Triton Junior College. But my mother's health continued to worsen. At Thanksgiving, she had a pacemaker implanted, and seemed to be doing a little better. What we didn't know is that she was having a series of little strokes, from which she seemed to recover. Then, in March, she was hospitalized because she wasn't feeling well. When I visited her that evening, all she did was complain that the hospital food was too bland. My uncle called me the next morning to let me know that she had suffered a massive stroke during the night.
The doctor told us there was no hope that she would recover from her vegetative state. After ten days, the hospital told us they had done all they could. I was searching for a long term care facility. That evening, when Jim, Jennie and I went to the hospital, my mother had worsened. I had to alert the nurses who seemed to know nothing about her condition. I signed papers—"no heroic measures", `'do not resuscitate." We stayed there at her bedside until 10 pm. I have no idea if she knew we were there. We were told to go home—they would call us if there was any change. By the time we got back to the north side, there was a message on our machine, telling us to come back. When we called the hospital she was gone. We went back and my mother was at peace. No coma, no long term care facility, just peace.
My mother's funeral was difficult. I thought I was holding it together until the Sign of Peace, when the pastor patted my mother's casket and said, "And peace to you, too, Arlene."
We had just signed a lease for an apartment on the Northwest side, and suddenly we had a house! But we weren't sure we wanted to make the big move to the South side, and so the house stood vacant. I had a friend at work who was just moving out of the convent into an apartment of her own, who had no furniture, just a nun's trunk of simple belongings. And so my mother's furniture went to good use. It was meant to be.
And so almost a year went by— "A year of favor from the Lord..." We lived in a beautiful apartment owned by crazed Polish landladies. "Don't use the front door", "take your shoes off in the house", "watch the type of guests you have in your home", "sweep your back porch", etc. The South side got better looking.
On February 2nd of 1994, Jim woke up feeling sick. He was dizzy and had a burning sensation in his chest, but still wanted to go to work. I made him go to the doctor instead. I'll let him tell his story now —
Jim's Story
It was a Wednesday, so my regular doctor was off, and the one I saw thought it best, after checking me over, that I have an xray and an electrocardiogram. The xray showed an enlarged heart but the electrocardiogram was inconclusive. On the 5th, I underwent an echo cardiogram, on the 9th, a Thallium stress test, on the 12th a thyroid test, and on the 17th, another xray.
For all this time, I was told to stay at home, rest as much as possible, and stay off the stairs. It almost broke my heart to see my wife leave for work every day, knowing she had to take two busses and the "L". I know she also had a hard time leaving me home alone.
My breathing was a bit labored, and they put me on a Nitro patch along with the drugs Capoten, Dyazide and Doral. (Blood pressure, excess water and a sedative )
The 23rd found me taking another trip to the hospital, this time for an angiogram. This test is where they wire you up with electrodes and put you under a huge machine in a sterile room. The doctor places a catheter about 15" long in the artery in the right groin area. The catheter is about the size of a thick piece of spaghetti, and through this they insert a thin glass tube that has a lens and light at the end. At various points they inject dye and take pictures. Unfortunately, I was allergic to the dye and went into shock. They stopped the procedure and took measures to bring me back to normal. The last dye injection inside the heart sends a wave of heat throughout your entire body and then it's over. I was awake for the entire procedure. The findings were a 90 to 95% blockage of the left anterior descending branch of the coronary arteries. Now we finally knew for sure that I had Coronary Artery Disease.
It was decided that I needed to wait for awhile for the medication to stabilize my system before attempting the angioplasty, so on April 4th I went once again for preop tests—xray, electrocardiogram, blood and urine tests. On the 6th we awoke to a blizzard, almost 10" of snow, and Joan and Jennie had to get me to the hospital by 6:30 a.m. What a trip that was, but Jennie did the driving while Joan was busy raising prayers skyward from the back seat. We were met at the hospital by Millie and Bob who came to keep Joan company until I was in a room.
The angioplasty procedure is almost identical to the gram, except there is no dye and a second catheter is inserted with a pacemaker. The first catheter has a thin tube inserted which they thread through the artery until they reach the blockage. They then maneuver a small balloon into place, and as they inflate it, you have the pain of a starting heart attack. As the balloon inflates, it presses the plaque against the artery wall, thus opening it. This was done 3 times in order to effectively open the artery. They then remove all the tubes and hold pressure on the artery until it stops bleeding, which takes about 20 minutes. Then they put a pressure bandage and sandbag on top, and I had to lay in bed motionless for 48 hours.
Now while all this was happening, my lovely wife was going through her own ordeal, and I will let her tell you about it as only she can.
Joan's Story
My days until the time of our illnesses were filled with work and trying to be a good wife. But then I got sick. I think I knew from the beginning what was wrong win me. I really didn't have to wait for the biopsy. It was cancer. In my hospice volunteer days, I had been looking at the disease from the outside, with a certain detachment. I was the strong one, the one who gave help. But now I needed the support of others—I was no longer in control. That might be the worst part of any serious disease—your body betrays you and you lose control of your life.
I still tried to go to work every day, in spite of my endless rounds of doctors' appointments. Since I had an aggressive type of cancer, my oncologist was going to treat it aggressively. I wasn't really prepared for it—it was still as though I was on the outside looking in, as though it were happening to someone else.
The first step was chemotherapy. At the time, I had shoulder length blonde hair, but after the third treatment, I asked Jim to cut off the matted tangle of knots it had become. I started to shop the wig catalogs—the mail person inadvertently delivered a catalog to our house that really should have gone to the last house on the block. Happy coincidence? I don't think so. I finally ended up with 4 wigs—to suit the mood of the day. I wondered if people were staring at me, staring at my wig, but then I decided I didn't care. I was still me, no matter what I looked like. Didn't they know I hadn't changed inside? It wasn't easy.
The tumor shrank, and then it was time for my operation. I had never been operated on before and I was frightened. Would I wake up? It was scheduled for June 29th, my mother's birthday. I didn't know if that was good or bad. Would my mom be praying for me up in heaven, or would I be talking to her face to face? I tried to trust in the Lord, but again, it wasn't easy.
I made it through the operation (I think it was called a semi radical mastectomy), with removal of 12 nymph nodes. Six of the nodes were cancerous. I was operated on at 7:00 in the morning and kicked out of the hospital at 11:00 am the next day. I guess I shouldn't have been sitting in the solarium having Starbucks coffee with Jim when my surgeon walked by.
When I gained back my strength, it was time for more chemo. The oncology nurses jokingly called the treatment room the "chemo cafe." As three or four patients would sit there with our I.V.'s dripping down, we began to know each other and care about each other. We cheered each other on, we commiserated with one another on bad days. We missed each other when treatment was complete. Going off chemo was frightening to me—it was a crutch, a safety net—you just knew as long as the drugs were flowing in your bloodstream that no new cancer would grow. But I, too, graduated to radiation therapy.
The doctors and nurses tell you how easy radiation is after chemo—not so! Perhaps it's the relentlessness of the treatment—every morning for six weeks, with no break, no rest; or perhaps the intimidating size of the machine, or the muscle pulling position—that was difficult to endure. I tried to imagine how Jesus felt on the cross, enduring throbbing muscles, not able to move, pain shooting through the body—but I wasn't Jesus
Because I had chemotherapy first, my skin was extremely sensitive and became severely burned. Luckily, Jim was a medic in the Air Force, and had no problems changing my dressings. I felt unclean, and unlovely, and tired beyond hope. I felt I had totally lost control of my life.
But again, I made friends in the waiting room. We were all in the same situation. We really cheered each other on when someone would say "only one more week" — "only two more days." I wasn't alone—it was "we are going to make it!" The other patients became my family, because we shared a common bond, a disease that linked us together. A common hope for recovery, a need to believe that we would once again be well, be `'normal." And again, we prayed—a simple prayer in the waiting room —"Please God, let everything be all right—give me the strength I need." A prayer from the heart, for and from all of us.
The long six weeks finally ended, and my skin healed, except for a permanent suntan marking the area of treatment. The doctor put me on Tamoxafin, two little white pills a day. I wondered as I was taking them—after what I had gone through, Is this enough? How can something so tiny keep the cancer away?
Our Story
It didn't. But at least Jim and I were given another "year of favor from the Lord ... " I still went to the oncologist every 3 months for blood tests, but everything seemed to be all right. After the angioplasty, Jim had to give up his job, and, in effect, lost everything he had worked so hard for over 15 years. But our old pastor from the North Side, Pat Lee was an angel, and gave Jim a job at Immaculate Conception parish. Gardener, sacristan, renovator of crosses and statues—Jim did it, and loved it. My office moved to the West Side, and so Jim wasn't far away in Old Town. We were able to drive to and from work together every day. We were happy.
And then I had a bad blood test. My doctor called me on a Monday morning the first week of the new year (`97) because she didn't want to ruin my holidays. I had to go in for another CAT scan of my abdomen and pelvic area. When we arrived home from work that same day, Jim's doctor had left a message on our answering machine—he had failed his stress test. Happy New Year! My CAT scan showed that my cancer had spread to my liver. Jim's follow up tests showed that the same angioplasty'd artery was once again clogged—it was taking togetherness too far!
I went back on chemo—a truly violent series of 6 sessions—I felt miserable! There, once again, went all the nice hair that had grown back—I was glad I hadn't thrown away my wig catalogs. Jim had another angioplasty—this one seemed to go more smoothly than the first one. Afterwards he went through a cardiorehab exercise program. Perhaps if it had been available the first time, he wouldn't have had to have a repeat.
At the end of my chemo, I had another Cat scan—the therapy hadn't worked. Nothing had spread, but the tumors were still there. More chemo with a different drug.
In the break between chemo sessions (a beautiful five+ weeks when my hair actually started to grow back!) two important occasions happened. My daughter, Jennie, graduated from Loyola University on Saturday (and was gainfully employed on Monday!) and I received the St. Peregrine Healing Award at Our Lady of Sorrows Basilica. Two happy days I wasn't sure I'd see.
Then it was back to chemo. This series (my fourth!) is probably the mildest of all, since I'm not violently ill, just generally miserable for a week—and that's a real improvement! Also, treatments are given every 3 weeks, not every other week as the last one was. You have a chance to feel marginally better before the next session. This new drug, Taxotere, only takes about two and a half hours. The last treatment took all day from 9:30 am to about 6:00 pm I can even go to work after this chemo! My last treatment will be on September 16th. I hope I make it.
My prayer for the last three years has been "please God, let us have some time together, in relatively good health", but I guess God has been busy somewhere else.
It's not always easy living on "death row" —not knowing what each day will bring. I'm reminded of the line from Morning Prayer — "... those who dwell in darkness and the shadow of death..." I don't waste my money on two year subscriptions to any magazines. When you're sick, you can't really make any plans—you never know how you'll feel on any given day. The safest thing is to just go to work as often as you can and then come hope and collapse. Jim rests on the chair and I recline on the couch. But we're together (along with Sparky, the semi wonder dog). And so, we're happy. Neither one of us could have gone through our situations alone—we would have just given up. God brought us together to give us strength, and love, and a reason to not want to rush to our heavenly home. Because our home here on earth is heavenly, too.
As Linda Ellerbee used to sign off from her television program—
"And so it goes..."