Rebirth

Tomorrow is Easter, so our thoughts turn to the subject of rebirth. Some religions believe in reincarnation; that concept exists in many cultures throughout the centuries. In addition to the religious concept of rebirth, I have found that cancer does lead to your own personal "rebirth".

From the moment you are diagnosed, you assume a new identity: you are now a person with cancer. You have become part of a greater community which you never wanted to join; from this point on, your life is irrevocably changed. You will confront your own fragility and mortality; it will be thrust upon you, in a whirlwind of thoughts and fears.

If you can manage to see something negative as also having a positive aspect, you can see your treatment path as a kind of journey toward this "rebirth". The road to the end of treatment is challenging, scary, and exhausting: it will change you both physically and mentally. You will never see things the same way again.

When you reach the point when you're on your "maintenance" treatment path, you are experiencing a kind of rebirth. Your life, with the help and caring of so many wonderful and dedicated individuals, has literally been given back to you. It is up to you to find joy in yourself, cherish being alive, and concentrate on living the rest of your life as the person who you really are, not just a "cancer patient". You are now so much more than your disease, and you have a new life.

An Unlikely Source of Inspiration

When I was six, my Father moved out of State, and I didn't see him for the next 35 years. When he and my Mother separated, we lived with my maternal grandparents, who were rather well-off financially, owning their own business. So, when he left, there was no need to legally pursue him for child support. I'm sure that they all thought that there was nothing that my Father could ever really provide for me, and that I didn't need him in my life; but Fate had other plans.

Fast-forward to me at age 41; I had heard that my Father's second wife had died of cancer after a long illness. Shortly after this happened, he began writing to me, and I wanted absolutely nothing to do with him! He wrote that there had never been a single day in his life when he didn't think of me, and asked for my forgiveness.

I was adamant that he didn't deserve a chance to get to know the daughter he had so willfully neglected, but my husband made me realize that I should at least hear his side of the story. He said that if I turned my own Father away without giving him a chance, that I would most likely regret it later on: if my Father passed away without me knowing the answers to so many of my questions, how would I feel then?

Reluctantly, and fearful of being hurt even further, I began corresponding with him on a regular basis. This grew into weekly, lengthy telephone calls where we both learned a lot about each other. My Father never maligned my Mother; he just said, as she always had, that they loved each other, but the relationship didn't work out. I also found out the reason why he couldn't have stayed in the marriage, and realized that he was entirely justified in leaving. It was a very sad situation. I finally understood that their breakup wasn't my fault; children often blame themselves when a parent leaves the family.

Finally, the day came when my Father knocked on my door after 35 years, and it was as if a part of myself had been restored. Knowing him helped me to truly understand many aspects of my personality: my love of poetry and literature, singing and performing, history and architecture, and many other qualities that I could trace back to him. It was comparable to finding a "me" that I had never really known. I had been given a great gift, and I was very thankful for this second chance to love and be loved by my own Father. I had my "closure", and my life was so much richer for it.

Sadly, three years after our reunion, and 1 year after his marriage to a wonderful woman, he was diagnosed with terminal stomach cancer. From the beginning, he was stoic and pragmatic. He patently refused chemotherapy, and I remember being so angry at him about his decision. I had just found him again, and now, I was going to have to lose him, just like I had experienced at age 6. This time, it would be forever - how could he possibly justify making this choice?

My Father's reasoning was that he had known a very close friend with the same type of cancer. This friend was treated with chemotherapy and lived in excruciating pain, with no quality of life, until he died an agonizing death a few months later. So, although my Father was given a few months to live, he decided that as there was no hope of saving his life, that he would live "as fully as possible, for as long as humanly possible". He turned out to be absolutely right.

He remained his entertaining, larger-than-life self throughout, for almost the next two years. He romped and took naps with his beloved Boston Terrier, "Teddie" (a gift from my Stepmother on his return from the hospital following his cancer surgery). He gardened, traveled, danced weekly at his social club, wrote poetry, watched hours (and hours!) of boxing matches, growing more gaunt and haunted-looking each time I visited him. All of his food had to be put through the blender so he could even try to eat, and several procedures were done to stretch his esophagus, but nothing really helped. He became a shadow of my cute, dear, funny Daddy, and it truly broke my heart.

Whenever the tears would come, he would always say,"No crying!", and I obeyed. He really didn't allow anyone to be negative or depressed around him; it was his way, and we all respected that. You could tell that he was in pain, but he refused to acknowledge it, and never once did I hear him complain about his circumstance. If something couldn't be changed, you accepted it, and that was that. He always wanted to concentrate on what was still good about life, and that was a valuable lesson to me.

About a month before he died, I flew down to Florida for what was our last visit. He loved black raspberry ice cream, and we managed to get him in the car for the short drive to the ice cream shop. He was in his pajamas, looking terribly weak and unwell. He couldn't walk, so I brought the ice cream out to the car. I could tell that he really enjoyed it, and I wondered how many days he would have left...

When I was diagnosed with cancer, I decided to follow my Father's example, and not ever feel sorry for myself. His strength and his unfailing ability to see the good in every day gave me so much inspiration, and they still do. I never could have imagined that his cancer experience would be a source of strength for me several years later as I made my own journey through treatment. Thank you, Daddy; I love you today and always...

Body Image

One overriding concern, before and after breast surgery, is "What will I look like afterwards?"  I had already had surgery on the same breast with the cancer, in almost exactly the same area, almost 14 years before. The earlier surgery was an excisional biopsy to rule out cancer on a palpable mass, which turned out to be a cyst. I was left with a semi-circular scar about an inch long, which was barely noticeable.

Because breasts are such an important part of our feminine image, it's traumatic to think that in order to remain alive, we might have to relinquish a part of our body, or be left with a body that has been disfigured by surgery. Although, given the choice, naturally you would choose life. Reconstructive surgery post-mastectomy has been a mandated benefit for more than a decade, so at least women now don't have to experience what women of previous generations did. 

With my cancer treatment, I had two separate lumpectomy surgeries, so this was something I had to get myself through twice. My cosmetic result, 17 months post-surgeries, is wonderful, and I am very fortunate and grateful. My husband was, as always, incredibly supportive, and repeatedly told me that nothing could ever change his love for me.

One resource available on the Intranet which might dispel any patient's fears about being left "abnormal" post-surgery is called "The Normal Breasts Gallery" (the site is not suitable for the workplace or for children, of course). Personally, I haven't seen a lot of other women's breasts; and the breasts which are displayed via our print and electronic media are Photoshopped into our "ideal" images. This website serves to show women what "normal" women's breasts look like, and it has helped me immensely. I want to mention this resource for women who are wondering about their own body image, because I didn't find out about it until very recently (thanks, Jezebel!).

Fatigue

In the past, I was compared frequently to the Energizer Bunny, but at this point in my life, I can say that I am no longer a stranger to overwhelming mental and physical fatigue.

The emotional toll of your diagnosis is one thing; it takes a huge amount of your energy to marshal all of your remaining wit and courage to put your psyche back together. This is when you find out what you're really made of. You try to maintain your focus, while wondering if everything you're going through will work: will you be one of the "success stories" in those statistics that you turn to, trying to reassure yourself? How will you plan for dying? Should you? Can you confront the possibility that your life may be coming to an end before you ever imagined it would?

Learning that I had to go through surgery a second time, when I had felt some degree of achievement at getting through the first operation, was quite a mental setback. About 40% of lumpectomy patients must undergo a second surgery, because there are still cancer cells on the margins of their surgery site. I wish that I hadn't needed to wait weeks for the site to heal, only to be cut open again. That was pretty terrible to anticipate, but at least the site was "clean" following the revision surgery. The post-operative infection was also something that I would rather have not experienced; I was truly very ill, and frightened.

Radiation left me a shadow of my former self, and even the smallest task seemed like a huge effort. I would walk a couple of blocks to and from my daily treatment, managing to do this only by sheer will. I had been someone who exercised regularly for decades, and now, I could feel myself becoming less physically powerful, which was frightening. Foods tasted different, and things that I could formerly eat with no problems would upset my stomach. Exercising wasn't possible, and napping became a major "activity". I would awake every morning wondering how I was ever going to drag myself through the day.

One month post-radiation, I began taking an aromatase inhibitor (AI) to prevent my estrogen-positive tumor from returning. I have to take this drug for five years, and I have now been on it for 1 year. It prevents your body from producing estrogen, so it really plays havoc with several aspects of your health. The side effects: "Weakness" - check! "Tiredness" - check! "Mental fuzziness" - check! "Frequent Hot Flashes" - check! "Weight gain" - major check!

I now weigh more than I ever have in my entire life, and I have read numerous accounts from patients who have gained significant weight while taking the AI drugs. These women also emphatically say that eating less and exercising does very little to counteract the effects of taking the AI, which is slowing down your metabolism even more in changing your hormone balance to fight the cancer. My physician swears that all of these drugs make you gain weight. It would be the height of irony to have a heart attack or become diabetic from taking a drug to fight your cancer, but this thought has occurred to me...

I am now keeping track of what I eat, and exercising regularly, hoping that I'll be able to kick-start my metabolism again. It's better to be tired from exercising than from inactivity; it's a whole different kind of tired, a "good" tired. I hope that in a few weeks I'll recognize my lower body again, because there's someone I've never seen before looking back at me in the mirror...

Another Birthday

Tomorrow is my Birthday. I never really care to make a big fuss about my Birthday; I was brought up in the tradition that "It's just another day". Dressing up, going out and partying never appeals to me. Now, of course, I'm happy to tack another year onto my current total, because it means that I have survived to have another Birthday, thanks to the wonders of modern medical care.

I don't know a single person who doesn't get older each day, and I would never choose to go back to when I was younger. Move forward, and don't look back. To anyone who doesn't want to "get old": consider the alternative!

Each day that I wake up and look at my wonderful husband's adorable face is the best day of my life. I am loved for exactly who I am, with all of my flaws and scars! Someone knows everything about me, the good and the bad, and that person loves me more each year that we're together. He even swears that I am more beautiful now than the day that we were married. What more could I ever wish for? Just to stay alive, so that we can continue growing old together...

Long before my illness, beginning in my childhood, I had lost so many family members that I already knew how precious and priceless life is. And, I believe that life is all about "the little things" which happen every day, and that many people unfortunately overlook.

My Father sent the following quote in my Birthday card several years ago:

"Every day is a gift; that's why we call it the Present".

My Mother gave me a plaque for my Birthday a long time ago that said: "There's something to love in every day".

I couldn't agree more.

"Why Me?"

I have never thought that Fate has chosen me to be a cancer "victim", or a cancer "saint". People who get cancer are exactly that; we are just people. There's no reason to treat us any differently. Don't feel sorry for us, or put us on a pedestal; and don't avoid us because we make you uncomfortable about your own mortality. Just be there when we need a laugh, a hug, to talk, or to simply be in your presence without speaking a word. Our society tends to deify cancer patients, and we are human beings who need other human beings to treat us like people.

One thing that's never a good response to any adverse circumstance is the "Why Me" attitude. It's self-defeating, and it won't help you to deal with this life-struggle that you have just unwillingly begun.

You didn't get cancer because the world hates you, or you needed to be taught a lesson - it just happens. There's no cosmic revenge involved. And, if you didn't know it by now, self-pity, no matter what the situation, isn't going to help you one little bit. It also has the effect of alienating others if you're a continual "drama queen" about your life. I know that I find people with this kind of behavior incredibly draining and tiresome.

Reading and educating yourself as much as possible about your cancer is a good way for you to focus, and push away some of your fears. For example, I read "Dr. Susan Love's Breast Book" from cover to cover immediately after my stereotactic biopsy, prior to my diagnosis. I wanted to know my treatment options, learn about possible surgical procedures that I might have to consider, and it was important to get this type of information from a renowned physician in the field. When I got to the part about various reconstructive surgeries, I actually began to feel sick at this possibility, but I kept on reading. Luckily, I didn't need this type of surgery; but it made me realize that there is always someone who is facing far more than you are, and you need to keep this in perspective. Your life is literally in your hands; you must be well-informed about your situation and the decisions you need to make. An educated patient is an effective self-advocate. Your focus should be on using your energy positively, not negatively - don't waste it feeling sorry for yourself. You don't have the "luxury of time". Don't let your diagnosis stun you into a state where you're unable to take action. Harsh advice, but true.

Alone

I have never minded being alone. Maybe it's because I'm an only child, but I enjoy my solitude, and prefer not to spend time in large groups of people. I'm used to going almost everywhere by myself, and I like it that way.

This being said, I have never felt as alone as I did during certain times during my treatment; to the point where it was completely frightening and overpowering, and I just wanted it to be over.

The six weeks of radiation treatment was one example: You're physically overwhelmed by the equipment, the feeling that you've lost any control of your fate, and something that has the power to kill you is being beamed into your body, in hopes of just killing the "bad" cancer cells. And, unlike the chemo patients whom I would walk by on my way to treatment, no one can hold your hand while you're lying on that table, which makes you feel even more alone. When the techs all leave the room, shut the door, and dim the lights, it's just you and the big, futuristic (yet oddly scary) machine.

The many scans and MRIs were also isolating and fear-laden. Although I'm a small person, I'm extremely claustrophobic, which only made things worse. I knew that having these procedures was to my benefit, but it certainly didn't get any easier.

The brain MRI was primally terrifying on several levels: having to be placed all the way into "the tunnel" of the machine (I now have an enhanced fear of ever being in a hyperbaric oxygen chamber, an iron lung, or using a tanning bed!); wearing a space helmet-like contraption, which increases your sense of being penned in and unable to breathe; strapping down your body at strategic points, so you can't move and ruin the imaging. Worst of all was only being able to see outside of the machine via a mirror positioned directly above your eyes, inside the helmet.

I was utterly panicked that: the building might lose electricity; I'd somehow be trapped forever inside the machine; the staff would forget that I was there, and leave for the day. I have spoken with other cancer patients who also had brain MRIs, and they felt the same level of abject terror during the procedure. If I ever needed to have this done again, I would ask to be medicated beforehand - without question. Sedate me, please!

The treatments, and the heightened sense of isolation during them, served to make me realize that I alone had the power to find my inner core of strength, and to use it in responding to my situation. Others can give you comfort, advice, hugs, but YOU have to find the resolve to get yourself through the bad times - to reach the good times, when you will no longer feel like "a patient" every day. And, that day will come.