My dad shared this on his Twitter feed this morning (as a linked document, obviously, as it is far too long for a Tweet) and I feel like it is worth sharing because it touches so deeply on the subject of his living with cancer. Much of the writing discusses my mother (who died of cancer in 2000) with whom he clearly relates now as he fights the same sort of disease.
Dad’s message is directed mostly at a group of old high school friends with whom he has recently become re-acquainted, so some context may be lost. The link at the end will take you to a set of four pages of images of my mother. Also, after his message, I will include a few more pictures with him, of which I have surprisingly few…
Living, rather than dying, with an illness that can only end in death can in some odd fashion be more blessing than curse.
Kathi taught me to face up to death, too. She was as aware of her own death, of the certain briefness of her life, as I was. But she taught me to live now, not to let anything sully today…until at last I got over the sadness of being condemned to live.
In early July, 1999, Kathi had a lump removed at the local hospital where I worked as the Director of Information Systems. On Friday afternoon before the 4th of July weekend, I grabbed a sneak peak at the Lab results and realized she had breast cancer. As a computer guy, not a clinician, I still knew enough about data to realize that breast cancer is most aggressive in younger patients and a 38 year old with breast cancer was going to be in a never-ending battle for the rest of her life.
I left work early, decided she really didn’t need the news before the holiday weekend, and made plans for a special weekend. We enjoyed the long holiday weekend before I broke the news to her on Sunday night that we had a follow up appointment with the surgeon on Monday. Of course, she knew immediately from that that the diagnosis was cancer.
Months of treatments, additional surgeries, chemo and radiation followed. One particular event stands out in my mind. In late December, 1999, her blood count was at zero leaving her at high risk to be in public places. But there was a movie see wanted to see and she was one stubborn lady. So I surreptitiously made a call to the manager at the theater, explained the situation and asked when crowds might be lightest. The manager gave it about 30 seconds of thought and quickly made a suggestion that I will never forget: He staggered one of the theaters 30 minutes off all of the other movies which allowed us to arrive with lobbies virtually empty. We then watched the movie in a theater completely empty and devoid of other viewers. Kathi thought it odd that a new movie would be so empty on a Friday night but I don’t think she ever realized that it was arranged, the act of random kindness from a stranger who was likely jeopardizing his job.
Y2K nonsense passed and we rolled into 2000 with optimism that she was beating the odds. But that all came crashing down in late June when she began having headaches and collapsed. The cancer had moved into the spinal fluid and the prognosis was suddenly hopeless. Questions focused on how much time and how much quality of life could we manage.
At Ohio State University Medical Center, she was unconscious for several days as I made the necessary medical decisions on her behalf. Those of you who knew me growing up and throughout High School probably realize that “making the call” has always been part of my make-up; I have always made decisions and then lived with the consequences, right or wrong. The medical team giving Kathi her care presented me with several choices and one particular option intrigued me. They wanted to drill a half-dollar sized hole in the top of her skull and pump chemo straight into the spinal fluid, with hopes of adding several months of life and quality of life. This would not be a risk-free nor painless option as there were several risks involved. But with Kathi unable to be involved in the decision process, it was up to me to judge the risk/reward and I made the call.
The first dosage had little impact except that it did bring Kathi to alert consciousness. The debate then focused on whether to risk a second attempt of a risky and painful process. Of course, I was convinced that a second attempt was going to get us positive results and I made the call to proceed.
And then I heard a weak voice saying “Jerome, make them stop. I want to go home.” I stopped in my tracks and realized that for once in my life, this was not my call to make. It was simply not my life; it was hers and hers alone. She had made her decision and it was for me to make certain that her wishes were followed.
So treatment ended and the next couple of days were busy with Hospice preparing our home to become living quarters for a patient totally paralyzed from the neck down. On August 1st, 2000, with hospital bed, oxygen tanks, etc. all occupying the living room, an ambulance brought Kathi the 60 miles from Columbus. August 2nd was her birthday and though she couldn’t move a muscle she was alert and family and friends joined us for a glorious time. That may sound crazy under the circumstances but it is still true: Kathi was at home amongst the people she loved and that is exactly the way she wanted it to be.
We knew that time was going to be extremely short but in such situations you never really ever give up hope. I recall one conversation between Kathi and her brother. Kathi had a Great Dane – a huge dog that terrified our 5 and 8 year old daughters – that I knew I would not be able to adequately care for. Her brother agreed to take the dog and Kathi liked the idea as well and pressed him on the question of when he would take the dog. I knew that his plans were to take Minnie back to Pennsylvania with him after the funeral but she kept pressing him on when he would take her and he simply could not answer. Eventually I whispered in her ear that he couldn’t bring himself to tell her that he’d take the dog home with him when he returned for the funeral.
This was an incredibly intense time period. I had been off work since late June spending long days at the hospital in Columbus throughout July and now at home in August trying to be a fulltime caregiver. Of course, Hospice came in daily but at times it seemed they were caring more for me than for her; there was little they could do for her but exhaustion may have been taking its toll on me as I was sleeping only minutes at a time and was also caring for our two little girls, the youngest preparing to begin kindergarten at the end of the month.
Understanding the intensity of such a situation is not easy unless you’ve been there; it simply is so much more than you may believe possible. And then, on August 31st at 10:35pm the intensity abruptly ended. After 62 days of never stopping, my caregiving roll popped like a balloon and I was suddenly a widower with two small daughters. I managed somehow to make the necessary emotional phone calls and then waited for people to arrive, verify that she was gone, and then remove her.
For the many of you who have been fulltime caregivers, you know the utter emptiness that follows after such intense caregiving. It is an indescribable emptiness that goes beyond the emptiness that one feels after loving a loved one.
But in many ways, everyone who loses a loved one feels this emptiness in the soul. And it is this emptiness and great sense of loss which is the entire point of writing this tonight.
People often debate the Purpose of Life. To me, there is really no debate. We are here to love life, love the world around us, and to love and cherish those who share our lives. All the other stuff is just window dressing.
When we lose someone we Love, there is for a time an intense emptiness that we must go through; we can’t “get over” it we must “go through” it. But the time comes when the Love and Memories once again can fill some of the void caused by the Loss. I fully believe that in this way the lost person continues to live on; to Love on. Life ends for all; no one gets out alive. But Love is never-ending.
Yes, we grieve our losses. But let the darkness be swallowed by the light. REMEMBER. Always remember, not how someone died, but remember how they lived.
As one who is fighting my final battles, I have no wish to be remembered for anything but how I lived and loved my life, family, friends, and faith. As we read from time to time of the passing of someone on our email list, remember them for how they lived and fill the void caused by their loss with those memories.
I pray for the peace and wisdom for everyone who managed to make it through my ramblings, thank you all for allowing me to take your time.
Well, I promised a few pictures, so here they are:
Thank you for reading today. I hope your are well and at peace with life. I will write again soon.