A wildlife biologist now working for a municipality as a Health Inspector and personally focused on protecting natural resources and caring for the needy—including special needs, neglected and abused animals—Toni never expected to need the special care that comes with a cancer diagnosis.
When I was 25 I was diagnosed with endometriosis. At the time, the doctor recommended a total hysterectomy, but I was so young and couldn’t imagine doing that. I pursued holistic options, which I was told would never work. However, in time, symptoms and pain completely resolved. More than two decades later, in 2001, I developed an ovarian cyst and had laparoscopic surgery to remove it. It was endometrial tissue, but it wasn’t malignant. The doctor thought it was hormone related and I started on bio-identical progesterone.
But, fast forward another 18 years, and things got a little complicated. I started having low back pain, bowel issues, and urinary issues. Things just weren’t right. I went back to the same Gynecologist/surgeon that had removed the cyst. He did an internal ultrasound and said that it was another, rather large cyst. And he said that it should be removed surgically. By that point, he was no longer operating and recommended one of his colleagues, who I met with the day before the procedure. We talked it through, and she asked what I wanted her to do if she found anything suspicious. I told her to remove anything she saw that looked even remotely suspicious. But honestly, I didn’t give it much thought. I never imagined that what I heard next would happen.
I Knew Something Was Wrong
The surgery was supposed to take about 30 minutes. I went into the OR around 11am and when I awoke in the recovery unit, I very groggily lifted my head to look at the clock. It was after 5pm. I knew that wasn’t a good sign. That’s when I noticed that someone was holding my hand. It was my former surgeon. I looked at him and he smiled and gave my hand a squeeze. His colleague that performed the surgery had called him. He left his day of appointments to come to the hospital. He is the most wonderful, gentle, compassionate, competent surgeon, yet that feeling that this cannot be good just sank like a lead balloon right through my soul.
Apparently, the cyst had gotten so big that the surgeon had to make another incision in addition to the original incision and still couldn’t remove the cyst in one piece. It was wrapped around my bowel and ureters. She called in a GI surgeon to help and despite her diligent care, the moment she touched it, the cyst burst. Had she been able to remove the cyst intact, surgery would’ve been all I needed. But that was not to be.
I stayed overnight in the hospital and the next day the surgeon told me that abnormal cells were found in the cyst, but local pathology couldn’t identify them. This is news that no one wants to hear. She asked if I would like to have the tissue samples sent elsewhere for analysis. I knew right away that I wanted them sent to MD Anderson Cancer Center in Houston. At a later date, the samples were also sent to Mass General Hospital and Tufts Medical Center in Boston for further analysis.
Divided Attention
That night at the hospital, I was more worried about my husband who was having pulmonary issues, than myself. An infection several years earlier had led him to spend a number of nights in the emergency room struggling to breathe. It became such an ordeal for him to simply take a breath that he went from hiking the tallest mountains in the Northeast, and elsewhere, to not being able to climb one flight of stairs to bed, instead sleeping in an office chair so he could rest his head on the tall back of the chair. Brutal.
He had more than 30 appointments with 17 different doctors including infectious disease specialists and several pulmonologists, and trying more than 20 different medications. This nightmare went on for many months. No one thought he had an infection because his X-rays were normal, his WBC was normal, and he never had a fever. I asked whether there were infections that didn’t necessarily result in those markers being elevated. The answer was always a solid “no”.
One evening, when he couldn’t breathe, I had it out with an ER doc and asked for other tests to determine if what he was suffering from was an infection. At my urging the ER doc took some swabs and did some blood tests. I called for the results a week later when I had not heard back from the hospital or his PCP, but it turned out the hospital never sent out the test. By this point, I was circling the drain, deeply entrenched in the pit of despair. I had an appointment scheduled with our holistic doc, and asked if he would be willing to see Bob that day instead of me. I thank our lucky stars he said yes.
Finally, Diagnoses
This doctor diagnosed Bob with a deeply embedded infection and asked why he wasn’t in the hospital on IV antibiotics. It turned out he simultaneously had legionnaire’s disease, pneumonia, Whooping Cough, nasal polyps and infectious asthma as well as off-the-chart allergies, likely exacerbated by the menagerie of special needs animals we were caring for at home (10 cats, including two with cancer, one with diabetes, one with high blood pressure, 3 abused, and three disabled rabbits that needed around the clock care). So, while I lay in the hospital bed, I turned away from Bob, who was sleeping in the chair next to me, and as quietly as I possibly could, sobbed myself to sleep. He was supposed to be receiving treatment and care, not me.
Meanwhile, my tissue samples went through two tumor boards at MD Anderson Cancer Center and they asked for yet another tissue sample. Seems, my innards were stumping everyone! The surgeon that removed the cyst called more than a month later to say that after going through two tumor boards and additional analysis, an answer had finally come back. “Well, it’s not cancer, but it’s not not cancer,” she said. I was a bit speechless with that answer—and that doesn’t happen often.
A Crazy Time
At that point, I was sure they were going to recommend a hysterectomy. I met with gynecologic oncology surgeons at a couple of different hospitals and went with the recommendation of my former surgeon, a doctor I now call the GYN Cancer Whisperer given his expertise and skill level, his bedside manner. Quite frankly, I cannot say enough good about him. Frankly, without him, my outcome would not have been nearly as good.
We put Bob’s treatment on hold so that I could have the recommended hysterectomy, debulking and staging surgery and then while I healed, my husband had his polyp surgery and started his treatment, an in-hospital regimen of aspirin desensitizing. This procedure has been a miracle cure for more than 90% of patients like Bob; but for 1% of people, it fails. With the way things were trending, you can guess which category my husband fell into – the 1% of people in which the treatment fails. Not only did it fail, it made him worse, making it even more of a struggle to breathe.
Meanwhile, the pathology report from my surgery came back with a diagnosis of Ovarian cancer, stage 1C, grade 1 (for the stage and grade, I felt incredibly grateful) and a recommendation for chemo. It was a crazy time.
Never Most People
Many of my friends said they felt pretty unsettled when I got a cancer diagnosis because they thought of me as a model for healthy living. I was always exercising, spending time outdoors, camping, backpacking, canoeing, biking, and also meditating, eating home cooked locally grown organic meals. I do all the right things supposedly—but that didn’t prevent cancer. They often said, “If you got cancer, what does that mean for me?” Even the thought of a cancer possibility invokes incredible fear.
Although my surgeon was at Tufts and we began the process of setting up chemo treatments there, the atmosphere in an environment like that means a lot to me and it honestly felt somewhat oppressive. The halls were long and pretty dark, without windows. It didn’t offer any holistic options other than periodic Reiki (I am a trained Reiki Master Teacher, and wholly believe in its therapeutic effects and have seen the wonders of it first-hand). As much as I loved my surgeon, and it was incredibly difficult to leave his care, after extensive research, I ended up at Mass General for my chemo treatments. I met with some of the holistic practitioners there and knew that was where I wanted to be.
The team was phenomenal. I felt so well cared for. Everyone was so compassionate. And the environment was warm and inviting. There were floor-to-ceiling windows in the chemo suite and while receiving treatment, one could sit overlooking the Charles River. (However, I ended up in a private room because I chose to use cold cap therapy, which was supposed to prevent loss of hair. Evidently, it does in most people, but again, my husband and I seem never to fall into the “most people” category.)
Complementary Therapy
There also was a lovely healing garden on the 8th floor, including a portion outside overlooking Boston and the Charles River. Additionally, patients could receive either reflexology, acupressure, acupuncture, massage, music therapy during treatments and also participate in Tai Chi, yoga, Art, Qi Gong classes outside of treatment times.
To build on what they offered onsite, I tapped into other complementary medicine resources in the area for high dose vitamin C infusions and traditional Chinese medicine, Tong Ren with Tom Tam, Hypnotherapy as well as supplements and juicing. Bob went with me to every treatment and class and complementary care session. He even very gently, very lovingly, washed my hair in a small tub every week to try to preserve every last strand as it came out in clumps — all the while telling me how beautiful I was. A critical part of my healing was the love and support of friends, family and co-workers, particularly my one-in-a-million, most phenomenal man that ever walked planet earth, husband.
A Place of Grace
My husband and I would go down to Boston the night before each treatment and stay in a nice hotel just a block from the hospital that offered a discount for patients receiving care. We would pick up dinner and sit by the window in our hotel overlooking the city. I actually came to look forward to that the night before treatments and I felt so taken care of at Mass General, that oddly enough, I didn’t mind the treatments.
The medical team worked hard to make the process so seamless and smooth and tolerable — and they are very, very good at it. It is hard to articulate, but the love I was surrounded with, the care of my surgeon and the treatment team made it a time of my life that was filled with grace. I guess it’s sounds strange and I do get odd looks when I tell people that the experience in many ways was a beautiful thing, a time that was filled with epiphany’s, beauty and grace — the whole experience got me back on track spiritually and I was loving life again, even if it wasn’t to last.
Treatment
The chemo gave me pretty bad myalgia which lasted for five days after every treatment, making it hard to even move. My blood counts dropped so low after the first treatment that I got an infection and spent most of one weekend in the ER. It took about 10 days to get rid of it. But otherwise, I had no real issues and felt pretty good during chemo. I was expecting it to be much harder. I think that being very proactive, including holistic care in my treatment and having the most amazing medical team truly made all the difference.
In the end, I had four rounds of chemo. Initially the surgeon at Tufts and I discussed three, but after I completed those with relative ease, the oncologist at Mass General suggested I go for another three since I was tolerating the treatment so well. I was torn. I wanted to knock out the cance, but keep my immune system strong—I knew I needed a strong immune system in this battle. Still friends counseled me that I might regret not doing all six if the cancer came back. I had to sit with the decision a bit.
Challenging Decisions
I scheduled the fourth, but wasn’t sure I would do it. Through research I had found that some patients have more rounds of lower dose chemo, and that some hospitals offer insulin potentiated chemo that also uses a lower dose, so I discussed the possibility of a reduced dosage chemo with my oncologist.
I felt empowered and inspired to be part of the decision-making process and discussions about options, the science behind it, the pros and cons. Although I expected an argument around that because I wasn’t one of those patients to say “whatever you say, you’re the doc” (quite the opposite actually), I was very pleasantly surprised. I went for the fourth round of chemo. But, even at a lower dose, that treatment had more of an impact on me than the earlier ones, so I stopped.
Many of the decisions I had to make through this were excruciating, but they were mine. I didn’t feel out of control, but rather like I had the weight of the world on my shoulders to get it right, and I felt that I had to bear that weight, alone. My husband, friends, family and co-workers were incredibly supportive, so loving, and there for me every step of the way. But those decisions that were mine to make had consequences and the way those consequences played out meant life, death or a lifetime of treating chronic recurrences, and that is a hard reality to bear.
Hearing the Message
I’m not a religious person, but I am deeply spiritual. Life had derailed me. For decades, I had gotten so caught up in the minutia of everyday life that I lost my way. I am a real task master. I can’t sit still if there is something to be done. And I am so focused on taking care of people, taking care of business, that I work until I drop. I had become derailed and spiritually dead.
This raging deadly disease had a message for me. And even though well-meaning people would tell me over and over to fight with everything I had, that did not resonate with me at all. I had helped other friends when they said they wanted to “battle” cancer with everything they had and I thought then that if I ever found myself in the same situation, I would fight like hell. Yet, I hadn’t formulated an attitude of fighting the enemy the way it is often approached, but rather it was that this illness had something to tell me about my life. It wasn’t my body turning on me, in fact, it was telling me, “hey, pay attention.”
A Beautiful Mess
Life is not easy, it is chaos personified, a beautiful mess. But life is for living and loving and enjoying. Somehow, before cancer, life had become something to be endured. All the joy had been drained from my life, and I had allowed that to happen. That was the real tragedy, I feel, not the cancer.
We have a limited time on this earth, a fraction of a minute in the continuum of time, and it is an incredible gift. To let that slip is the real tragedy. I didn’t want to continue like that and cancer gave me the opportunity to heed that message – and I did. It can be a challenge every day to not allow myself to get caught up in the minutia, but it is a challenge well worth the work. While I still don’t view cancer as the enemy, I do have an overwhelming fear of its recurrence. Ovarian cancer has such a high recurrence rate.
Living with Fear
When I was growing up, there was such a culture of fear in my house. My brother and I had that instilled in us at an early age. As a pre-teen, I had a cardiac arrhythmia that could have caused sudden cardiac arrest. I knew there was something wrong, but I was just told to grin, bear it and go to school. The episodes of arrhythmia were excruciatingly painful.
In addition, my mom was deathly afraid of intruders and would lock the door behind me even when I went out to the mailbox. I understand where that fear came from. My mom’s parents had survived the Armenian genocide; had witnessed family members being burned to death, other family members dying by the side of the road while they were forced to keep moving on the “death march” while others were taken in to the Turkish army and never seen again. I don’t think my mom realized the damage she was doing to her children but deeply embedded fear, fear on an epic level, is something I struggle with daily.
The hardest part of the whole cancer experience was the fear, is the fear. I would wake up with night terrors and be awake for 4-6 hours. I would talk to friends at 2 or 3 in the morning. (While I was going through cancer, two of our closest friends were going through other severe health issues so we would talk or text in middle of the night.) I was fearful of going through a painful period if I were to die. And fearful of leaving Bob. The fear can come at any time – if I have a pain, I fear it’s a recurrence. I know that other women experience this as well, but for me that fear is paralyzing.
Remembering the Beauty
It is easy for me to get into a dark place thinking about that fear and the mess we are in as a nation, as a planet, dealing with human idiosyncrasies, the loss of common decency, environmental destruction, animal and elder abuse, and neglect. I get so disillusioned about the state of affairs that it blocks my vision of anything good, and I catch myself spiraling downward. Changing my thought pattern helps me get through it, but it can be a real challenge.
I remind myself, I have this moment, this day, and this is a beautiful day. That’s really all any of us have anyway, right? We all die and when I get to that point, I want to feel that I have spent every day in joy rather than in fear. It takes constant work, but I remind myself about how once I’m gone and in spirit form, I won’t be able to see, taste, hear, dance, feel the love from Bob and my friends, all those things that come with the incredible gift of being alive, and being human, right here, right now, and that is an awesome gift. I appreciate each and every moment more than ever now…because there might not be a next moment.