Kalena's Story

REACH FOR THE JOY!

My story is about reaching for the joy when all hope appears to have vanished. It is about choosing life, in moments when I wanted to give up. The drama that I have endured in the past 12 months may have conquered someone with less fortitude. But I am a survivor and I will persevere. I believe that there is a reason for the way our lives unfold. I am still hoping to understand why I have had to sustain the challenges I have faced, and why, after nearly losing this battle to cancer, I am once again thriving, strong, ready to live another day. To be a role model to my daughter is what keeps me alive, keeps me moving forward, one day at a time.

On July 10 of 2007, only days after moving halfway across the country with my almost three-year-old daughter, I was diagnosed with Stage IV breast cancer, “terminal” stamped prominently on my forehead. The dis-ease had metastasized to my spine, hips, shoulders, lung and liver. I had gone misdiagnosed for over a year, requesting test after test to determine why my health was failing. Over the next few weeks, I lost my hair, my breast, my posture, my ability to do so many things I once took for granted. I was once an athletic, energetic, youthful Mom who taught acting to children. I have undergone chemotherapy, radiation, two surgeries, extreme weight loss and a loss of spirit, which I am working each day to reignite.

Nearly a year had passed since I first I went to see my OB-GYN to show her a small mass that had developed on my left breast. She set up a mammography and ultrasound immediately. The results of both tests were negative and the ultrasound report even uses the word benign. Unconvinced, I went to the office of a breast specialist and surgeon. She did not believe it was anything to worry about and in fact said that she did not want to cut me open in case it was not cancer. In her estimation, the problem was related to nursing and would right itself when I stopped breast feeding my daughter. She joked that if I pumped hard enough I might extract some cottage cheese. Yuck! She recommended we “keep an eye on it.”

My breast continued to show unhealthy signs. It began to cave in and showed the beginnings of “peau de orange” – an indication of IBC- inflammatory breast cancer. I asked the breast specialist about this and she, again, assured me that I did not have cancer. My husband, Rick suggested that it was all in my mind. I knew that something was terribly wrong, but no one backed me up.

In January 2007, I began a battle with chronic back pain. I maintained my healthy diet, regular chiropractic care and yoga in hopes that this would pass as an early sign of approaching 40. Over time, however, the pain became debilitating as my energy depleted. I could no longer keep up with the demands of caring for my toddler. We had been the center of our Mommy and Me social calendar and my friends watched, as I slipped into a depression while my body betrayed me. After several months I began to wonder if the two symptoms could be related, as my joy for life dissipated under a cloak of constant pain. It was clear that I was in need of medical attention, and my friends and family could not understand why I was not under the care of a physician. Meanwhile, my husband worried about finances. As a self proclaimed entrepreneur, he was constantly concerned about lack, yet did nothing to ensure that our little family was secure. My body was under a vicious attack, and there were several occasions when I passed out from the pain and woke up vomiting in agony. My husband urged me to “sleep it off.” A chiropractor was all we could afford, and even then, there were constant complaints about the cost. Our medical deductible was high, and unfortunately many of the decisions around my health care revolved around money- or lack thereof. And somehow it was always up to me to bring in a minimum amount of income to cover our household bills.

On July 3rd, a year ago today, my daughter and I flew to Austin, Texas to begin our new life. My husband was driving our belongings from Las Vegas and would be delayed by about a week. We had decided that Austin would be a better place to raise our little girl and get Rick’s business off the ground. Rick reassured me that once we got to Austin, my body would somehow, miraculously right itself. We knew only one couple in Austin. They literally saved my life.

While staying with these friends, my back continued to cause me agonizing pain. They urged me to go to the Emergency Room. I was terrified to go, because I had been programmed to believe that my health was not worth the cost of care. I was afraid that my husband would be upset with me if I spent money on medical attention, but these friends convinced me that I had no choice. I am grateful every day of my life to them. Had I waited, I don’t think I would have made it to the end of the summer.

On July 5th of last year , after nine hours in the waiting room, the attending physician in the Emergency Room took one look at me and stated, “You have breast cancer.” When asked about my back pain, he said, “That is most likely a stage issue.” I didn’t understand it at the time, but what he meant was that breast cancer often metastasizes to the bones and it was likely that there were tumors compromising my spine. Why hadn’t anyone told me this before? After over a year of being convinced that there was nothing to worry about, this guy took one look at me and with his eyes diagnosed cancer!? But I was the healthy one! I did yoga and ate vegetarian. I was breast feeding. I got an early mammogram.

We spent the weekend agonizing over my options, waiting to hear back from the ER doctor to schedule the proper tests. My husband arrived on Sunday. On Monday, I was finally admitted to the hospital. Within 24 hours, it was confirmed that I was indeed battling stage four breast cancer. On July 10, 2007, my life was forever changed.

I believe it is our response to change that is of the real importance, that which determines our personality. When I was first diagnosed, many people, including myself, thought, “This is it, game over.” This realization shook me violently awake and made me realize I had a “Do-Over.” It didn’t matter if I have 20 years or 20 days, I did not have to make the same toxic choices I had made before. And it has slowly been revealed to me that the choices I had made had lead to this moment, including the choice to put my trust in Rick. Every day is a new day to take a Do-Over and make new choices. And whatever time I have left in this body, I am going to create the best days of my life. Every day. One day at a time.

This has lead to a year of self discoveries, of rebirth. A year of seeing the world through newer, cancer colored glasses. I have taken some incredible risks, and my goal is to discover the life I was intended to live. I don’t believe that I got sick for no reason. And that I have been given a second chance at life is nothing to take for granted.

Unfortunately my drama does not end with cancer. Throughout this process, my marriage began to unravel. My husband, whom I always suspected was looking for a short cut, an easy way to achieve success, saw my disease as his own personal cancer lottery. It started in the hospital, meeting with lawyers to determine whether or not he could sue the doctors in Las Vegas for “wrongful death.” I was still breathing and he was worried about how to make money off of my corpse. I told him that I did not want to spend what was left of my life in court. My family urged me to change the beneficiary of my life insurance policy to put into trust for my daughter. Rick and his camp convinced me that he would need the money to raise our little girl. In the end, he won that argument and I did not change the beneficiary. Now I am told it is too late.

Rick then began a full time campaign to acquire money through donations. We started a website to share my story (www.kalena.org) and attached a Paypal account to it. Thousands of dollars came through this site and not a single dollar was claimed as income on our taxes. I could not believe that after nearly a year of letting other people pay our way, my husband was not even going to pay taxes on this free money. Rick refused to look for a job, even with the help of my brother and some well connected Austin friends. He hid behind my illness and continued to allow my aunties on fixed incomes to pay our bills, sent letters to cancer organizations asking for donations, used our daughter’s SSDI to pay the rent. Meanwhile, the deductible went unpaid. Rather than getting a job, my husband spent all his waking hours seeking charity, while my family helped support us, and my daughter went to daycare, funded by my brother.

Money continued to be a thorn in our relationship. My brother had created a trust fund for my daughter so that Zaiden would be assured some financial stability in her world and urged me to consider putting her trust down as the beneficiary. I argued with him at the time, as I was convinced by Rick and his camp that he would need the money to help him raise her, to buy a house for her, etc. And he probably will, because he has proven that money slips easily through his fingers. I now regret not having listened to my brother 11 months ago. If the money goes to a trust for Zaiden she will be guaranteed the essentials- like college- and the niceties, like dance or guitar lessons or a trip or photography or whatever she desires. And she will never have to hear “We can’t afford it.” God forbid she ever has medical issues and her father tells her that he cannot afford to take her to see a specialist. The trust assures that she will always be able to do whatever she desires. There is already the possibility that she grow up without her Mom due to this dreadful disease. I want to make sure that she at least has what she needs to really explore life and figure out her passions without being held back financially.

I spent most of my energy working to maintain a positive attitude for my daughter’s sake. I created the illusion of a wonderful marriage and wrote a biweekly blog about Reaching for the Joy. I was, and still am, under hospice care. I have tried several Western therapies, including hormones that my former oncologist used to “shut down the factory” and Herceptin, which caused a violent reaction. But I am a huge believer in “alternative” care and I have been using acupuncture, yoga, prayer, meditation, Reiki, AIM and a plethora of supplements, all to my benefit. Eventually, I began to put on weight again (I got down to 98 lbs on my formerly 5’6” frame), my hair came back (curlier than before and a bit greyer), I was able to drive and take care of myself and my daughter. I was ready to take back my life. And as I began to do that, I felt a strong resistance from my partner.

Desiring nothing but peace and happiness while I fought this disease, I had created a fantasy: we would co-raise our daughter in spite of our marriage dissolving. I began to tire of the façade and in March, as I was growing more and more independent, my husband and I agreed to part ways.

My health was still in the balance, as the stress of a failing marriage took its toll. My numbers began to climb again and the tumor in my liver had grown to six times its size. The treatment I was undergoing was not working. It was time to go back to the drawing board.

On April 18th, just two days after visiting with my Austin oncologist and discovering his concern about my numbers, I got on a plane with my daughter. It was a planned vacation that the three of us were to go on together to visit my family. We had scheduled the trip- using donated plane tickets - to see my Father and huge extended family for Christmas, but postponed the trip due to my health. This was our holiday visit just in time for my 40th birthday. My family knew that things were not going well at home and in fact, my husband was packing my belongings to move me into a rented bedroom of an acquaintance upon my return. My parents urged me to reconsider my options. In Denver I have a large extended family: Father, Step Mom, brothers, sisters, in laws, cousins, aunts, uncles. There are over 100 in our clan in the Denver area alone. Why didn’t the three of us move to Colorado so they could help take care of us?

My daughter and I had a wonderful visit. Zaiden fell head over heels for her uncles, and she quickly developed a close bond with my Father and Step Mom. My Dad hosted a BBQ in my honor and at least 50 people attended, filling the house with laughter and love. Zaiden adores her colorful family and really had the opportunity to get to know lots of her cousins for the first time. She established many routines with her grandparents, such as feeding the birds and having “kid coffee” in the morning with Grandpa. She even got over her fear of dogs, as she befriended the family pooch, Scout. She was reigning princess at my Dad’s house, and one afternoon, while making her rounds among the flower garden, Zaiden exclaimed, “Grandpa, if this is your yard, than it must be my yard! And I can run and play as much as I want!” She sat on the porch, pulling her skirt over her knees, her chin propped neatly in her hand and assessed her new acquisition and shouted, “Grandpa, I’m finally home!”

During our visit, it became clear to me that the three of us, Zaiden, me and Rick, belong here in Denver. With the disease escalating on paper and our imminent separation, all three of us need the love and support that only family can offer. I thought on it, prayed about it, talked it over with my kin and wrote a lengthy letter to Rick. I chose to write rather than talk because I can articulate my points without interruption, and anyone who knows Rick knows his talent for persuasion, or “Jedi mind tricks.” I rationalized that with no job, a lease on an apartment that will end in July, a history of only a few months, and no real roots keeping any of us in Austin, it just made sense for us all to move now. As much as we had all grown to love the city and especially the people of Austin, it was time to sacrifice for my needs: I needed the extra care that my family could offer to allow me to be the devoted Mother that I have always been. There are no guarantees how long I will have in this body and I want to spend every moment I have with my daughter, whether I have my health or I return to the delicate state I was in only recently. Since I was not going to be sharing a roof with my husband, and I may need extra TLC, it just made logical sense to be where I have a support system in place.

My first PET scan- something I have been requesting since long before I was first diagnosed- taken here in Denver the first weeks revealed that the cancer had aggressively progressed. The liver tumors, which I so arrogantly bragged about receding in February, had escalated to a whopping 6x4 cm- and that is just in one location. The bones- in particular, my spine- are under attack as well. I realize that I will need help as time marches on, and I would like to be instrumental in my daughter’s life for as long as possible. Living in Austin means relying on hired help to take care of my needs, should my health decline. The choice seemed obvious, and I believe that a supportive husband would agree: in Colorado all three of us would benefit from the love and care of an enormous, loving family.

When I asked Rick if he would consider moving to Colorado, he said, “No and I suggest you get on that plane as scheduled.” He had a threatening tone to his voice, and he did not even offer to discuss it. I told him that I needed more time to think and more time with my family. I was scared. What if I moved in to the rented room and ended up getting sick again? What if my bones began to break? Who would care for me? A nursing home? Rick suggested that my Mother could move to Austin and that if I did end up debilitated again, that family could drop their lives and fly down to Texas for weeks at a time. Rick has always been easy to volunteer other’s inconvenience over his own. My family members all have homes and jobs and each other and history: roots in Colorado. While I was sick and disabled, my husband did not have a job, we were renting an apartment, my daughter was in day care 4 days a week, as many as 9 hours a day. In Colorado, there are literally dozens of families who would be honored to jump in and do whatever needed doing to assist us- all of us. It just made perfect sense to me. What would you do?

Rick and I had considered moving to Colorado just a few years before. We chose Austin, mostly due to the weather. Neither of us had ever been to the city, yet both of us had spent time in Colorado over our lives. Austin was a new adventure. But this decision was made before cancer changed the landscape of our lives. There are no guarantees that I will continue to thrive. Having extra loving hands to care for me and for Zaiden just made sense now. And if Rick wants to start another new business, what a better place, where there is a generous, loving and well connected family willing to do whatever they can to help support us- all three of us? My father is a 63 year native. My brother is a successful business man with friends in every industry imaginable. I asked him to consider my idea while I extended our trip by a week or two. I needed more time with my family. He could come out with his ticket and assess things for himself. He responded by hiring an attorney.

As the paper work was being readied by his attorney that week, he pretended that everything was fine and even told me he was looking to find a mediator to help us work out our differences. I was literally blindsided when the doorbell rang during dinner at my folks’ house, and a woman handed me a stack of legal papers that accused me of endangering our child. In fact, the attorney- a child custody specialist with a reputation of being a bear in the courtroom- was hired days before I even shared my feelings with him, which showed me that he had been plotting long before I even considered this solution. I now know that he was looking into divorce attorneys as far back as February. I had simply fallen into his trap. How was he paying for all of this when he had been living off of my and Zaiden’s disability and the donations that came in from my website?

The insurance deductible is $5400 a year. Currently I owe nearly $11,000 for treatments already incurred. And that number is growing daily. Last summer while I lay in the hospital bed believing that I may never see the outside world again, I was told that the treatment plan I desired was out of reach, financially, and yet Rick was about to win the cancer lottery. And now, while we are about to go to court to have a judge determine where our little girl lives, he is gloating about the fact that once he filed for divorce, the beneficiary on my life insurance cannot be legally changed, so he will “get my money when I die.” Meanwhile, Zaiden’s future is being spent to send Rick’s attorneys’ children to college.

I found an attorney who offered to help me, free of charge. This lawyer told me to take care of my daughter and my health and that he would take care of the rest. He would ask for a continuance so that I could undergo the prescribed treatment plan, and allow me the time I needed to figure out what to do next. I put all of my trust and faith in this man. He let me down. On the day of the hearing in late May, I was undergoing chemotherapy treatment. I received a call from Rick letting me know that the continuance had been denied and that I was obligated to send my daughter back to Austin within three days. That was five weeks ago.

I borrowed money from relatives to hire another attorney in order to prepare for the fight of my life. The hearing is July 21st. And Rick has everyone in Austin snowed by his sad tale of the single father. My constant prayer is that the court will see the full picture and allow me to have my daughter with me- at least while I am in relatively good health. Her health, happiness and welfare is all that I care about. So why am I in Colorado while she is in Austin?

Just one look at the physical difference three months have made since my arrival is reason enough. In Austin, I had become a shell of the woman I had once been. The treatment I was on was not working, the stress of a manipulative husband was taking its toll on my health, I had no one I could count on. Here I have the unconditional love and support of my extended family. I have a medical team who is willing to take the time to work with my unique fight with cancer. I am not under the manipulative thumb of a man waiting for me to die. This is the Mother that my daughter deserves.

I am under a brand new treatment plan and my body is responding well. The doctors feel that there is hope that I could defy fates for a number of years. I finally broke down and accepted the idea of chemo and radiation. I am on a low dose drug (Gemzar) and I am having no side effects whatever. I also had Cyberknife radiosurgery a couple of weeks ago that shot some of the tumors in my vertebrae with radiation. It is pretty incredible– stuff of sci-fi movies – that only strikes at the tumors and circumvents the healthy tissue. I am physically stronger today than I ever thought I would be again. I am walking without assistance, driving, doing yoga, and feeling grand. I have no pain, no nausea, no side effects. Even on chemo days, I joke that I am going to the spa for my treatment, because I leave four hours later feeling relaxed and hungry. My new medical team, led by a fabulous female oncologist and including a neurologist and orthopedist is part of the reason for my decision to stay in Denver.

Blame certainly serves no one. But the reality is, had I been supported to begin with, I may have been diagnosed sooner and had a better chance at combating this disease. Instead, I was diagnosed “terminal” at the young age of 39, my two and a half year old plucked off my breast, and all I recall was talk about money: About what we could and could not afford. About suing doctors and making a killing in court. About my life insurance and how Rick was planning to pay off debts and buy a house after I died.

I kept this all to myself, in part because I could not believe this was my life. This was my husband. I wanted things to be different, so I invented a fantasy that I wished for, in hopes of somehow recreating my life. I defended him to my concerned family. I suppose the thought that I might not have much longer to live clouded my judgment. I wanted to try and create happy memories for my daughter and refused to see things as they really were. I swallowed my tongue a lot in those first months for Zaiden’s sake, but as I got clear again, I realized how incredibly unhappy and how frightened for her welfare I was. It was time to speak out.

My first priority and concern, since the day of conception, has been the welfare, safety and happiness of our child. Zaiden is a light. She is incredible. She somehow seems to understand what is going on and what is to come. While we have never discussed death or even shared that I may not be here much longer, she seems to know in her heart that our time together as Mommy and Daughter may be limited. And she really understands when Mommy needs time to rest, and lets me know that she is ok and happy. We talk all the time about being in one another’s hearts, and now, while we are apart, she reminds me of this whenever we talk.

Somehow I know that she will remember this time, even though she is only three and a half. We have always been big on adventures. Adventures can be found in a trip to the grocery store or a walk around the block. And at the end of each day, we recount our favorite moments of the day and talk about all that we are grateful for.

The day she returned to Austin, Zaiden asked me if she would ever have a daughter. Before I could formulate an answer, she said quickly, “I’d rather have a Hermit crab.” And each day she asks if I am well enough to jump on the bed: our gauge of how strong I am feeling on any given day. Today she remarked that she cannot wait to jump on the bed together, “high so high til we touch the sky!” She is an astonishing little girl.

Moving to Colorado was the single most well thought out idea I think I have ever had. I wanted Rick to be a part of it. I know that I am in the sunset of my life and I want the most important people around me now: my family. Rick is fighting me in court for not only custody of our daughter, but also to ensure that will not be held responsible for my medical struggle. On the chopping block is also the life insurance policy that by all rights should be earmarked for our Zaiden’s future.

I love Austin. I really do. And I know that God led me (us) there for a reason. I don’t have all the pieces of the puzzle yet, of course. Maybe it was for Rick’s sake. But I don’t want to end up in a nursing home, and that was the way things were heading. Now that we are in the throws of a custody battle, Rick has accepted a job and rented a house- things I have been begging him to consider for many years.

I still don’t know the reason for this illness. There is so much more yet to unravel.

They say love is blind. I realize that if you have been a reader of my work this past year, this information conflicts with some of my earlier writings. I was living in a fantasy. I was under the delusion that my husband actually cared about me. I had to. I could not accept what I am now having to face: that my husband has been waiting for me to die to collect the loot. That is pretty hard to swallow. But I was clinging to the dream that I created: That we were a family and we’d live happily ever after. I think that Rick saw my cancer as an opportunity to get something for nothing. He was going to put on a good show until I passed. But I fooled everyone and lived and got strong again. He couldn’t control me anymore. I believed in Rick and put my trust in him, but it turns out I was only his little pawn to manipulate.

It is in the darkest moments of our lives that the biggest lessons are dumped into our laps. We are blinded temporarily, groping around to find the reasons. But it is in the journey back to light that we begin to see again and appreciate all that we have. I know that this is all a part of my contract- my mission. And I am ok with that. The painful stuff, while we are in it hurts so deeply. There have been days that I wished I hadn’t survived; That God had taken me. But I know there is more for me to learn in this body.

It is incredible how easy it is to take life for granted. Even now, I am walking upright without assistance. I am driving. I am living independently. And yet I forget that there was a time in recent history that I was relying on others to get me around. I could not shower on my own, I lost all my hair, I lay in bed most of the day, could not sit on the floor to play with my daughter.

Today, as I walked in the garden, I took in the beauty that is all around: the flowers, the trees, the sky, the insects, the light that exists in every living being. There is so much to learn. So much to love. I love my body, for all its flaws… Even the breast that looks like it’s winking.

Every day we have a choice. We can choose to accept what is, or we can create a new reality. I choose the latter. Not that I am in denial. In fact, quite the opposite. After a year of believing and even pretending, I am finally in a place of acceptance. I accept that this is my fate- these were the cards I was dealt. I am cool with that. Even with my three and a half year old in tow. Somehow I believe that she chose me as a Mom, cancer and all, and that this is a part of her journey as well. And the fact that I am stronger today than I have been in more than a year tells me simply that I have more to give and more to live.