My Cancer Journey
As I write this I realize it is the anniversary of my breast cancer diagnosis. Seven years to the day. What synchronicity is that!
I am a psychotherapist with over 35 years of experience in the field of human potential and over a decade in private practice. I pride myself on being pretty aware, present, mindful and all those great things. Seven years ago I was completely humbled and disillusioned from this idea. I felt what I thought were swollen lymph nodes in each armpit. Since it was bilateral, I never gave it a second thought. The one on my left eventually went away, but the one on my right stayed and grew steadily. I started calling it my little lima bean. Believe me, I know what you’re thinking, YOU NAMED IT?! I have the most profound new respect for the coping mechanism of denial. It is the superstar of coping mechanisms as far as I’m concerned and I bow down to its powers. Before long I was calling it my little almond because it grew a little larger and a little harder. One day as I was swimming it actually got in the way of my stroke. When I got home I was alone in my kitchen. I remember this moment vividly as it was such an other worldly experience. I have had a few of these in my life and they are profound moments of life altering, world shattering, explosions of undeniable truth. I was leaning against the counter when I heard a powerful, commanding voice coming from deep inside me; although I swear I heard it from both inside and out like Moses must have heard the word of God when encountering the burning bush. It said, “Raizel, that is a lump!” At that moment I knew I had breast cancer.
My PA was unavailable so I made an appointment with another doc in her practice who I knew to be a breast cancer survivor. My husband and I waited over two hours to see her while she was at the hospital on an emergency. I didn’t want to put this off now that I had waited all summer to address it. The doctor arrived in a frazzled state from having such a backed up patient load and hurried through our appointment. She minimized my concerns, said it didn’t look or feel like breast cancer, to watch it, and come back in six weeks. You can imagine how satisfying that encounter was! After contacting my PA and explaining the situation, she got me in for a diagnostic mammogram the next day.
I had taken time during my day in-between clients and had every expectation of returning to work. That wasn’t going to happen. They wanted to do a biopsy right then and there and the head pathologist of the hospital actually performed it. This time being in the field of psychology payed off. I was pretty good at getting him to reveal information he normally wouldn’t until the results from the lab were read. (It turns out this skill came in quite handy with various ultra-sound, mammogram, and EKG technicians throughout my treatment). We chatted amicably throughout the biopsy (as much as one can), talking about both being foodies and how I was thinking about becoming an officiant because his daughter was being married by one. I kept asking him leading questions which he tried his best to dodge. He kept saying “I think we understand each other” or something to that effect. During the worst of the biopsy I used a meditation technique of going to my happy place and was able to stay calm and relaxed throughout. At one point I was holding one of the nurses hands as she and another nurse remarked that I actually seemed to be smiling. They started asking me about it and I had to tell them to please not talk to me! It takes a lot of concentration to stay focused on the meditation rather than the pain; but it is a technique that works very well for most people and one that I am happy to share with you.
My husband was supposed to go out of the country the next day for a two week business trip. The pathologist said he would rush the results and call us by 5:00 that evening. Of course, we did nothing but wait by the phone all day. By 5:00, I was such a wreck that I had to crawl into bed. Finally, the phone rang. This lovely man, who had no idea of the superpowers of denial, said to me “Well, I guess this will come as no surprise to you because we were so much on the same page during the biopsy…” And I’m thinking, “Right, we both love to eat and think officiating is cool….” NOT THAT I HAVE BREAST CANCER! Even though in my gut I knew it was true. The voice told me so. I knew it before the biopsy. But, the powers of denial were so strong they deluded me yet again. I am beginning to understand how the Native Americans couldn’t see the ships Columbus sailed in on.
They performed a lumpectomy right away, but because I am BRCA II positive, my oncologist said I would need a double mastectomy and a hysterectomy following chemotherapy. He thought it likely with my diagnosis that I would develop ovarian cancer if I didn’t already have it. He said the chemo should take care of anything that may already be there. In my mind, I wanted to know if there was something now! I interviewed numerous gynecological oncologists and finally settled on someone with an excellent reputation. Before going in I had an ultra-sound. I dropped my husband at the airport for another business trip and went to my appointment not knowing I would be walking into the biggest nightmare of my life!
The doc said I had a torqued uterus and that she wanted me on the table that Thursday… in three days! My husband was already in the air. I called my mom and she flew right out. I was scheduled for an oophorectomy which would be a less invasive laser surgery with the understanding that if she found anything she would do a complete hysterectomy. They found more cancer. When I awoke my belly was distended and stapled from pubic bone to rib cage, just under my xiphoid process. I was freaked out! No one had told me to expect this, and then there were the drains. So many women I have talked with have told me no one told them there would be drains!
I developed complications and an ileus. After days of vomiting everything I took in including water, they finally put in an NG tube. To prepare for this invasive, scary, and extremely uncomfortable procedure I used a visualization technique in which I opened my windpipe and allowed the tube to flow in “like butter.” This is usually quite a difficult procedure in which patients freeze up making it even more painful and difficult. I remember the nurse running down the hallway telling all her colleagues how effortlessly the procedure went. I wanted to scream at her, “It was ME, not YOU!” Anyone who has had an NG tube knows what a demoralizing experience it is. You can’t turn or lift your head. Your head is in a bowed position and that alone brings up all kinds of emotions. It was hard for my sons to see me this way and hard for me to see them seeing me this way.
I was in the hospital 10 days. They took out my staples and sent me home. That night my wound opened up and my mom and son had to rush me to the emergency room literally holding myself together. I will never forget the horrible treatment I received from the attending physician. He basically said that since my surgery hadn’t been performed at that hospital, they were not responsible for helping me. The hospital where I had the surgery was over an hour away. An angel of a nurse shooed him out of the room and took exquisite care of us. A woman who understood how scared and emotionally vulnerable I, my mother, and son were at that moment.
They couldn’t sew me back up. I had to be hooked up to a wound-vac for six weeks. When I healed from that I underwent chemotherapy followed by a double mastectomy, choosing to have gap-flap reconstruction which turned out to be a twelve hour procedure.
When my plastic surgeon saw the scar from the wound-vac he offered to correct it for free. It looked like homespun yarn: thick and ropy in some places, thin in others. I almost didn’t let him fix it because I felt like I had earned that scar and sort of loved it, or at the very least was proud of it. He had to go quite deep to cut through the scar tissue. When he reached the end, he discovered a massive hernia where the stitches had torn open from the hysterectomy and did his best to sew me back together nice and tight. The gynecological oncologist had used a loop stitch to sew me together, a stitch that is not tied off or knotted. The whole seam had unraveled!
A few months later, the hernia pushed through again and this time I was sewn together by a specialist. All in all, during a 15 month period I underwent six rounds of chemotherapy and had seven surgeries amounting to about 34 hours of being under anesthesia. I have long-term neurological and physical side effects. Two of those surgeries and the wound vac were not related to my cancer treatment. For my own sanity I needed to know why she used a loop stitch that could unravel so easily. When I finally got through to her and told her everything I suffered because of it, she informed me it was the current, standard, accepted practice unless the patient was older, had a compromised immune system, or other health complications. I hit the jackpot with all three: I was in my fifties, about to have chemotherapy, and I had cancer! I don’t know what she was thinking. I was angry for a long time.
I do believe the medical community cares about their patients. However, the system can, and is ethically obligated to look at cancer care in a more holistic light. This would include taking into account financial and insurance realities as well as incorporating more integrated care such as helping patients prepare emotionally and physically for procedures. When I originally saw the gynecological oncologist and she told me she wanted me on the table immediately, that was in early December. If I could have waited a few weeks more, on bed rest if necessary, I could have avoided the first of three $10,000 deductibles. However, at the moment I wasn’t thinking about that. I trusted my surgeon. I didn’t even think of asking those questions.
I learned so much from this experience and never want a single woman to have to go it alone, uninformed, or unprepared. It was a hard road both physically and emotionally, yet an incredibly spiritual journey. A journey full of light, personal growth, and love… of fight, surrender, and ultimately, acceptance. From being a giver to learning to receive. If not for the unwavering loving care I received from my family and friends this journey would have been an entirely different one. As I heard so many times: “This is not a club you would ever choose to join, but you will never meet better people anywhere!”
