An Interview With...
When Julio Ericastilla finished his first interview, he promised to send pictures from Guatemala (and his ranch Vera Pax) when he returned home from his vacation in California. Shortly afterward he wrote to say he did not know if he would be able to fulfill that promise. He told me that he was battling a very aggressive form of cancer and that his visit to California was for testing and treatment. He had been told that he possibly only had six months to live and he wasn’t sure that he would ever return to Guatemala. In the months since then, Julio has been an inspiration … fighting his illness with strength and optimism. Here, he candidly answers questions about his very personal experience with cancer.
When you first found out you had cancer, what was your initial reaction to the news?
Surprisingly perhaps I was not all that startled by the news. Retrospectively, I question whether I may have denied the possibility or simply appealed to my natural tendency toward being objective. By that I mean that my instinctive reaction was simply that I accepted it as fact and immediately deduced that there were things, a process, I must follow to overcome it. There also is a possibility that I engaged my posture as one who must be objective and therefore strong and dauntless. I do remember that I did not consider, at that moment, my mortality. Maybe I should conclude my answer by alluding to my gratitude to my wife who died of ovarian cancer. Having been her support I learned much about the disease and its effects but more, from her I learned about courage and strength.
A common question among people who have cancer is how they came to get cancer; did you ask that question yourself?
I had a subtle warning which I perhaps stored in my subconscious. I served in the Republic of Viet Nam my last of eight years in the United States Air Force. I was exposed to the now infamous herbicide, commonly known as Agent Orange, known to be a carcinogenic chemical. While I cannot be absolutely certain, it is reasonable to assume that to be the cause. May I anticipate the "Why me?" question?
"Why Me?" I never gave that a thought. But I have heard it posed so many times it merits thought. Although, as I said earlier, my cancer is traceable, I believe that our bodies may already have some malignant cells within, genetically inherited or acquired. Probably it is more a question of why will mine propagate or colonize when others' will not? Objectively, I think it is a question of statistics. When we hear negative statistics we are always glad we are in the unaffected minority, or majority, whatever the case.
It is human nature to fill unanswerable questions with suppositions or learned myths but again, I think that is a waste of energy. The fact is I have cancer. I accept it and I will defeat it. It is sheer nonsense to think of my illness as punishment or somehow deserved in any way. Of those who have kindly expressed their regret for my illness, many have asked: "Why you?" It is not answerable.
How did you find out that you had cancer? What kind of cancer do you have?
In March of 2004, I went to have a routine and overdue physical examination. Among other things, the doctor prescribed an X-Ray of my chest to evaluate my lungs. That revealed a suspicious area calling for closer examination by way of a CT scan (Computerized Tomography). A CT scan is a series of pictures of a specific area which is enhanced by the injection of a contrasting agent into the bloodstream through a vein. That test confirmed that there was abnormality in some tissue within my lungs. Logically it was presumed to be lung cancer. Judging by the size of the mass it was deemed to be advanced and apparently aggressive since a previous physical examination eighteen months earlier did not reveal it.
When I consulted the pneumologists (doctors who specialize in lung diseases), they felt that my appearance and lack of symptoms were not consistent with their immediate evaluation of the advanced stage of the disease. They thought that I felt and looked too healthy. To resolve their doubts, they performed various tests; first they did a biopsy. A piece of tissue was extracted through a procedure called bronchoscopy. A tool is inserted through the nose, through the bronchial tubes and into the lung to look through a flexible cable and pinch a piece of tissue. The results showed, though not conclusively, that it was in fact cancer but not the type they thought. A different type of cancer was suspected so other tests were done. The next test was a Fine Needle Aspiration in which a needle is inserted into a suspected area and samples are drawn for analysis. It also proved inconclusive so a surgery was performed to remove a lymph node from my groin. It was analyzed and finally revealed the cancer type as Mantle Cell Lymphoma. This cancer is aggressive and very difficult to treat.
When the doctors told you that your cancer was advanced, aggressive and virtually untreatable, what posture did you take?
I would almost have to repeat my previous answer but let me add: I did become more aware of my mortality and began a thought process to accept it. At one time my doctor thought that I had from six months to one year of life left. My prognosis is not that clear as I sit here today. I have gone through six courses of chemotherapy (administration of curative drugs to kill the bad cells in my body). Initially, when I was told that my cancer was serious and that there was not much that the doctors could do for me, it was as though I was strolling without a definite destination and suddenly someone came to me to tell me I had to be somewhere specific and at a given time. It felt like I was suddenly running. The curious thing about it is that my rush was to get things in order so all ends would be neatly tied before I died. That thought is still with me of course, but I am now jogging toward the finish line because the finish line is not so definite now. Still, a feeling of uncertainty prevails.
What concerns did you have?
My daughters, who are my biggest supporters, sat me down, so to speak, to discuss my disease. They were of course affected because they had already lost their mother to cancer. I will not pretend to know what their thoughts were, although certainly they expressed some, but I know that their susceptibility to cancer had to enter their minds. Our session was about two things. One, they detected my characteristic objectivity and wanted to assure themselves, and me, that there was no denial as is often the case. I assured them of my awareness of my mortality and, at that time, its likelihood and imminence. The second concern was that I was not externalizing my feelings and worse, that I was keeping them away from the process. That is, that I was not letting them be a part of what I had to go through.
Is this part of what you call your objectivity?
Earlier I spoke of being strong and dauntless and I admit that it is part of my objectivity. I pose the question to myself and for that matter, others as well: what purpose does it serve to have others suffer with you? What purpose does it serve to tell someone how bad you feel or how much you hurt?
The obvious, sensitive answer is that they who love you want to share and it is noble and gratifying but not, in my mind, true. The priest who married us almost forty years ago defined love for me in the most comprehensive words: "To love is to want the good of the beloved". I have shared and praised those words infinitely. With that premise in mind I repeat my earlier questions. If I share the fact that I have pain it will not reduce my pain but it will cause pain upon someone who loves me. So why do it? I need to be strong and dauntless but I am not beyond sharing my emotions with loving people around me, nor would I deprive myself of the help of those who want to help because I truly believe that expressing oppressive thoughts relieves one of their burden. This reminds me of my fervent wish to literally share my wife's suffering, when she was dying from cancer. I knew I could not but it did not diminish my wish.
How have you been doing with your cancer treatments?
Initially, after four anxious months, when a clear diagnosis was finally made and a treatment was recommended, there was some apathy on my part. The treatments recommended were not the most effective known. The most effective therapy available was considered too risky for me based on my age. The next best thing, a combination of drugs infused every 21 days seemed inadequate and its effect doubtful. Besides, one of the drugs tends to damage heart tissue so with its uncertainty it also brings its own added risk. After four courses of chemo, another tomography (CT Scan) was made. To my great joy, it shows that the drugs are having a positive effect. It is not remission (the cancer has not disappeared) but it is encouraging to know that it is not a futile effort. I consider myself lucky with regard to the chemotherapy: first, because it is having a positive effect and second, because I have tolerated it so well.
There are two reasons for that as well. One, I think, is because experience has taught the medical profession much about the process so that the effects are less or milder than earlier times. The second, I take credit for and want all to know. The axiom, "Mind Over Matter" should not be underestimated and practiced to the nth degree. I have "talked" myself into constantly remembering that the chemicals, regardless of the unpleasant side effects, are being infused into my body to do good. I know that I will have side effects but I accept it and even welcome them as signs of efficacy. I visualize the chemotherapy as a potent, invincible army which has entered my body (with my permission) mandated to kill every last bad cell within my body. Every breath I take is a pure force which goes into my body and collects all the bad cells and exhales them away; symbolically of course. Every breath is a small battle won.
The drugs are dumb so they also kill good cells and therefore the side effects, but side effects are a small price to pay for the greater good. What keeps me going, you ask? The knowledge that cancer is but an obstacle we can overcome if we believe we can. I mean: believe it with all your might!
How has life changed for you since being diagnosed with lymphoma?
Doubtlessly my life has changed. The first and most obvious, as well as the base for everything else, is the sense of renewal. Though comical, it is appropriate to think of it as the proverbial slap in the face to "wake one up". We go through life like a detached leaf in the wind swaying this and that way depending on our surroundings and the things which shape our life.
There! I think I said exactly what I feel. Our life is "shaped" by others because we allow it. I don't want to be too philosophical about it. Let me just say that when something of such great impact comes into your life you suddenly rear up like a frightened horse and get a different view, a higher view. There is a sudden appreciation for life which until then is taken for granted and suddenly, all else loses value; only the very essence of living matters. In a materialistic world such as ours, we have a sense of ownership which tends to squelch all else. We begin measuring the palpable and then only the better and finally only the best. We assume that we will live forever and spend our lives "spending" it as opposed to living it. When we face something like cancer, we become more contemplative of the simple things which we would otherwise cast aside as intrusive. A loose feather on the ground is beautiful. It is marvelous in its structure. The smell of a plant is not a source of allergy; it is the scent of life. And so, by this intrusion in our lives we are renewed.
Chemotherapy needn't be unpleasant or something to fear, it should be thought of as an infusion of new life. When people compliment my relative good appearance I am thankful because it is a compliment and reassurance. But more than that, it is confirmation of the existence of the new me, a better me… a livelier me perhaps.
What advice do you have for friends and family members of individuals battling cancer or other serious illness?
Oh, I think it is presumptuous to think I can advise others in this regard. Every person is their very own complicated being and will face their situation in their own way. But I think that the thoughts inherent in my previous comments might be something which some may consider food for thought. Taking this into consideration the one thing that I have asked of some friends and family is that I should not be patronized.
An expression of pathos is not a necessity nor should it be a burden upon them. I ask that they respect that my way of dealing with my obstacle is my own… my choice. I do believe deeply that there is nothing that we cannot overcome if we truly want to. With the help of science there is hardly a disease which cannot be cured or alleviated. Then there are various sciences, some conventional and some not. Regardless of the choice or value of palliative remedies I am convinced that each individual makes a fundamental decision to be well or to concede, to succumb to "whatever ails you". We are in fact the sum of our experiences and therefore, we, each of us independently, decide how great an obstacle in our path is. We can merrily skip over it or prostrate our life before it. But it IS OUR choice.
What words of encouragement do you have for individuals who are fighting serious illness or disabilities?
Again, I should repeat what I just said. Put in other words; a disease is as serious or as fulminant as you allow it to be. What is good for a sick person is good for a healthy person and vice versa. I am speaking of attitudes of course. The truth of the existence of a disease is self-evident but the degree with which it affects us is in our hands, in our minds if you prefer. The best time to get well is when you are well; to stay well. I thought I was a person conscious of my body's well being, prudent in my consumption. Yet here I am fighting to be well but I will not waste precious energy in lamenting or assigning blame. I will save it to propel my wellness.
What is your current prognosis? How do you see your future?
I have had six courses of chemotherapy. Since after the fourth one, a CT showed improvement, I am optimistic there has been even more improvement. Presently I am a candidate for a Bone Marrow Transplant. I have gone through a battery of tests to evaluate my total physical health and my mental health as well. It will all be evaluated and then a decision will be made as to the value of subjecting me to it. It is a very long, complicated and very dangerous process. First it will be decided if cells used will come from a donor or from my own body. The most desirable, as I understand it, is to use my own because it will prevent a serious problem if my body would reject the engraftment, (the adoption of the transplanted cells).
If they use my own bone marrow, first they will extract marrow from my hip bone and freeze it. Then, I will be subjected to a very strong course of chemotherapy. Finally I will be injected with the marrow and then wait until it re-enters my bones so it can begin to produce the necessary blood cells again. It will take a very long time for all of this to happen, about six months in total.
My future then, as I said earlier, is still an unknown. The bone marrow transplant is a very good thing, a chance to eradicate the cancer. It does not come with guarantees that it will be successful and it is very dangerous because it may also kill me. So, will I do it? Will I take the risk? Absolutely! Because in my mind, I will make it succeed. Can I fail? Yes, but I will have tried.
What have you learned about yourself because of this experience you have had to face?
Alright, now I will be pretentious! (laugh) The disease has brought much attention on me from so many people I cannot count. I have heard and read things from people who have awakened a vision of me I did not see. I concede that many were said by some who thought my demise imminent and I have even considered myself insulted by some expressions which I know lacked sincerity. But, when the same qualities are noticed by many, they tend to become acceptable truths.
That has been a revelation for me in the sense that I have tried all my life, and succeeded at least in part, to be humble and selfless. I have failed to recognize my influence upon others and have failed to see characteristics in me which are very positive. It is humbling to hear the things people have said to me about me, but now I recognize that I have in some ways underestimated myself and that has contributed to that change in me to which I alluded earlier. I think I am a more secure person, think better of myself and I like the fact expressed by many that I am liked for who I am, and that I have something to contribute. I guess I can say that I like myself (my newer self) better.
- 21 December 2004
21 December 2004
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