Kenneth B. Kay

A Navy veteran of the tumultuous Vietnam and Nixon years, he served his country from inside that chaotic White House. I cannot sing his praises enough! As a writer and a brother, a mentor and a friend, this man has had a life-long effect on me and so many others. Enjoy the spell he weaves with his mastery of prose and attention to detail that only his style surpasses.

Cancer Patience

Kenneth Kay

1/14/03

First I think a short preface is in order. If you are currently battling this insidious disease, or are a survivor of it, or you have lost a loved one to it, and something I say or the way I say it causes you any pain or offense I truly and earnestly apologize for causing you that pain or offense. However, in respect for our common experience, I ask you to take a moment to thoroughly examine that feeling and objectively determine if the pain and offense had its root cause elsewhere.

What follows may be called a testimony but I prefer to think of it as a loose collection of thoughts and impressions triggered by the events and experiences in my struggle both with this disease and with myself. A testimony usually has a specific goal or theme but my only goal here is to share my experience so that someone might draw some insight or value uniquely his or her own from it. Experience is of no value unless it is shared. If you receive any benefit from my efforts then we both are truly blessed.

Renal Cell Carcinoma. The words fell from the doctor’s lips like a curse in some unknown tongue. You learn a lot of new words when cancer enters your life and also find that a lot of words are used in different contexts. My disease “presented” itself early in December of last year. Symptoms for this stuff are not consistent or predictable because the symptoms are common to a lot of more common medical problems. Therefore cancer as a specific disorder is thought of as “presenting” itself in sets of symptom disguises to the medical professional.

To make matters more confusing, the symptoms can vary widely from person to person. To further confound the doctor, each person perceives his or her symptoms differently or on occasion not at all so that the physician must base any diagnoses almost exclusively on technically based tests.

In my case the initial diagnosis by my family physician was thought to be kidney stones. Back pain on the left side and blood in the urine are typical indicators of this common condition for men my age when the plumbing starts to go south. An initial x-ray test was set for just before the holidays and showed an enlarged left kidney with a possible growth. That was somewhat ominous and called for a sonogram to verify and a referral to an urologist. A sonogram was scheduled for just after the holidays.

The sonogram indicated that indeed a growth was present but an MRI would be needed to fully verify a specific diagnosis. Having just been laid off from my job in September, my savings were just about gone and unemployment payments just could not cover the added expense. I turned to the VA Medical Center in Tucson to reduce my out of pocket costs as much as possible. By the time I was determined as qualified and an appointment could be set, it was mid-March. The MRI required a seemingly lengthy period for reading and interpretation although it was only three days. Time has a way of really dragging in these situations. It is easy to get impatient.

You can never be fully prepared for a cancer diagnosis of any kind. A quick Internet search of mine revealed that the statistical survival rate was about 35% 18 months after diagnosis if left untreated. Statistics have little real meaning until you personalize them. This bit of unwelcome information meant that I had approximately a 1 in 3 chance of seeing only one more Christmas with my grandchildren. Totally unacceptable!!

The first instinct is to lash out at anyone, and everyone in a reaction to the unfairness of it all. True acceptance never really comes but you just kind of get to the point where you try to come to an understanding of your circumstances. Besides whoever said life has to be fair? Fair has nothing at all to do with it. Stuff just happens. It is life so get used to it! None of us are getting out of it alive anyway. Brave words and true but oh so hard to accept!

Early on is when you need patience most of all to avoid destroying your support system before it can even form. People alone don’t get cancer. Their whole families do. It affects the lives of direct family members most of all but extended family members - friends, co-workers, and acquaintances - all have to formulate their reactions and express them as best they can. As the directly affected party, you have to let them do so. This requires that you exercise patience for their sake mostly but also in order that they can become an effective part of your support system. You may think you can take this beast on alone but you simply can't. To even try is foolish. Besides you will need their patience to replenish your own.

When I started writing this I knew it would not be easy. Just this far has taken more than three months - in fact almost four. How any one ever gets through writing an autobiography is beyond me. The emotional flood at times can be so overwhelming that you grab and sometimes manufacture any distraction you can as an excuse to end it. It is harder to handle than the discomfort of the disease itself.

On April Fool’s day I started having severe pain and I could not urinate. Blood clots had formed in the left kidney and were blocking my urinary tract. We had just moved to Glendale to be closer to family so my wife could have help and support if needed. I guess I over did it lifting and driving up from our old place in Sierra Vista. An operation called a radical nefrectomy was hastily scheduled in the Tucson VA medical center.

As I am writing this today I am glancing over to a bookshelf in my room at a small heart shaped pillow with a white terrycloth covering with red diagonal stripes of various widths. It is absolutely garish and matches nothing in the room. Any interior decorator worthy of the title would toss it in the nearest trashcan in an instant. It was the first inanimate object I saw after I came out of the anesthesia after having my left kidney removed. I noticed that some but not all of the patients in the ICU had similar pillows. I later learned that the nurses gave out these pillows to patients that they thought were special and needed extra care. I am as proud of that ugly little pillow as I am of any medal or commendation I earned in the service.

I know a lot of people will not agree with me for various reasons when I say that the VA hospital system is absolutely top notch in terms of quality of care, professionalism of the staff and for my money, any other category you care to use to compare it with other health care systems. All I can reference this opinion to is my personal experience and I have yet to have been mistreated or made to feel inferior in any way by any VA hospital staff member including even the administrative and support staff. If you mean mouth the VA hospital system and especially the two major Arizona facilities to me we are going to go to general quarters in a heartbeat.

One thing I noticed while in the ICU and on the “floor” while I was in the hospital was that the patients who had problems seemed to create them themselves. They saw their problem to stem from the quality of care they received but in fact they caused the problem primarily through lack of patience either with the staff, themselves, or their circumstances.

I concluded that the real cause of most of their problems was their fear of the situation they found themselves in. For me it was easy to understand. Fear; founded or not, causes tensions internally and with others. These tensions need release before they fester and turn into emotional responses that end in problems.

One of the most effective ways of releasing these tensions I have found is humor. If you can find something to cause even a smile or chuckle at the times you must interact with others in accomplishing your care, you make both you and your caregiver relax so you can both function the best they and you can. It doesn’t take much to cause just a lightening of the moment and it is easy if you try. The reward is worth the effort.

When my surgeon came to see me after the operation he pulled the old good news bad news routine on me. The good news was he thought that he had gotten all of the renal cell mass. The bad news was that he had noted a swollen lymph node and took a biopsy while he had me open. Diagnosis was Large-Cell B-cell lymphoma. Damn! I’d hit the daily double!

It took almost a week in the hospital and about three more weeks to recover from the operation. I then pressed further on into the mystic realm of oncology. Since I was living in the Phoenix area now, the Tucson center passed my case off to the Phoenix facility. Treatment options were discussed and after a set of tests to “stage” my condition I began chemotherapy.

The way I understand it chemo is actually a controlled poisoning of your body with the aim of attacking the body’s fastest growing cells most of which are cancer cells. Unfortunately hair, nerve, and white blood cells have growth rates that are in the same range as most targeted cancer cells. This leads to some pretty unpleasant side effects - loss of hair, tingling in the fingers and feet, chronic fatigue, nausea, loss of appetite, just to name a few.

Since my oncologist was concerned that my lymphoma was aggressive, the treatment regimen he put me on was something called CHOP, which represents the first letter in the titles of each of the four major drugs used. They were to be administered intravenously every 21 days for eight treatments or cycles. The usual length of the treatment was only six cycles but the doctor wanted to be sure I had the best possible chance at remission.

The treatments began in late May and continued until mid-October. Needless to say this seemed to be the longest period of my life. I was sure that eternity would be over first. Finding that you got winded just going to the bathroom or having to take breaks in the middle of simple everyday tasks such as taking a shower didn’t help either. Getting through it took more patience and of a subtlety different kind. I simply could not afford the energy to lash out or get mad at anyone or anything if I was to feel like I had any type of control at all in any aspect of my life.

After treatment ended the side effects persisted. The doctor says it will take anywhere from 3 to 6 months for me to be back to my normal activity level. Meanwhile he ordered a CAT scan and it was discovered that the renal cell carcinoma had moved to my lungs. Yippee!!

So here I sit this morning not so patiently getting prepared to start a new treatment program involving something called interferon and interluken 2. I am told that this treatment has about a 15% response rate for my cancer type. The doctor tried to cheer me up by saying that renal cell is relatively slow growing and that the “clear cell” type, which is the type that I have, is one of the slowest.

Another Internet search revealed the happy news that the survival rate is 60% beyond five years. More statistics that I don’t even care to personalize. That is better than before but at what point is the cost in suffering from treatment side effects worth the possible return of extra time? There are no guarantees.

Time for more patience I guess. Giving up is no more of a viable option now than it was in the beginning.

There is no doubt that cancer forces the reordering of the priorities in one’s life. You find out who really loves and cares about you. You lose and you gain. Your perspective changes most of all and that effects everything in your life from your relationships with others to how you see yourself.

The strangest thing of all is that you come to realize that the cancer experience is not all bad. You form new higher quality relationships and come to cherish other established ones even more. Exposure to others in similar or worse circumstances helps you deal with your own. Knowing that whatever time you have left is threatened has a way of making you appreciate the moment more.

All in all having cancer is one of those life experiences you never want to repeat but you come to realize offers benefits that are unique and unexpected. In that respect I suppose it is kind of like being in the service. You know your life is at risk but somehow that fact is secondary to the struggle of just getting through to the next day, week, month, or year.

Along the way with God’s Grace and Help you grow.

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Little Sisters - “I was her foil and scapegoat . . .”