Friday, January 21, 2011

Life is short but sweet for certain

To say that the last few weeks have been challenging would be the understatement of the century. You know, I have to admit that when I first received the big scary diagnosis of stage four cancer I thought, okay i can do this. I'm determined, I'm brave, I'm motivated, let's go! I had this incredible circle of support that just grew out of control with momentum. I felt so strong. I felt so in control. And then on Christmas morning I felt a lump. It was in my side, a hard, rigid lump. My immediate reaction was obvious concern but I was able to talk myself down because I had been taking Tylenol 3 for my back pain and one of the hard side effects of codeine is that it causes extreme constipation, so it wasn't unrealistic that this lump in my side was just a blockage in my intestine, no need to get all stressed, right?
I decided to ignore the lump, which became easy to do because shortly after Christmas I was taken off of the hormone therapy I was on and my back pain became my main focus. This pain was all consuming, it was nervy, it was exhausting and excruciating. I related the back pain to going off of the drug, I assumed that I was going through either withdrawal or detox and just kept telling myself, it will get better tomorrow. Well sure enough, time passed by and after a week and a half I was still waiting for the pain to get better. Also, in the meantime I had been trying to get my intestines moving and so I was loading my self up with laxitives and dried fruit. Finally, after what felt like forever I managed to relieve my system. Exhausted and weary, I rubbed my poor belly and once again felt that gruesome panic crawl up the back of my throat, the lump was still there. Unbelievable.
I went to visit my doctor the next day. He felt my stomach and watched my face as I squirmed through the pain, he pulled up my last CT scan report on his computer and confirmed my fear. The two enlarged nodes that were found on my aortic artery during my surgery are located midline, and he believed that the pain I had been experiencing was probably due to the fact that these nodes are growing and therefore pushing my organs around and causing a lot of pressure and pain. Jenn, he said, we need to get your pain under control. In the time I was in his office my body did not stop moving. The pain was mind bending, my teeth were clenched, I was exhausted because I hadn't slept for more than two hours in a row in weeks, I hadn't eaten anything solid in about a week and a half, I was literally losing my mind. He put me on morphine and registered me in the palliative home care program, a program I would have balked at a month before, I graciously nodded my head. That was last Monday.
On Tuesday, I went to my naturopathic doc appt to receive my first IV treatment. When i came home that afternoon I didn't feel well, my body was working hard to adjust to the morphine, I was exhausted and I was so nauseated that I couldn't keep water down. I went to bed, defeated, depleted, empty. That Tuesday night will remain engraved in my mind for the rest of my life because that night I had the moment. I woke up at roughly 2am, the house was silent, I looked at Dave sleeping peacefully beside me, I could hear Coady breathing softly in his room. I felt my hips, they were sore to the touch, my morphine dose had worn off. I looked out the window for what might have been five minutes. I was frozen and I thought, this is it, I'm dying. This is it, this is the beginning of the process. How did I get here? Where is my muster? Why am I not screaming? Why am I okay with just lying down with this? At that point I must have just dissolved into sleep. The next morning I went back to my naturopathic doc for another IV treatment, thank goodness, because the personal interaction I had that day with a very special individual was nothing short of divine intervention.
Im not a religious person, but I do have a very strong faith of my own that is a bit of a mish mash of everything. I was raised in the catholic church, and so I believe in heaven, although I don't have a real clear picture in my mind of what it looks like or how long it takes to get there. I do have a very strong belief that when the time comes and I do crossover, I will be reunited with spirits I have loved in this lifetime. I also firmly believe that people are brought into my life at very intentional times for very intentional reasons. And so on this wednesday morning, this beautiful woman, felt compelled to come to me and give me the words I needed to hear. For her privacy I won't share her name or position but she was in the office and noticed that I was sitting in the IV room by myself and thankfully she grasped the opportunity to talk with me.
Jenn, she said, I have something I want to share with you. First of all, she said, I think you are going to do well, and I'm sending you all of my positive thoughts but I wanted to tell you, that my mom died when I was three and a half years old, and what I want you to know is that, I remember her, and I know that she loved me. Also, I want you to know that I have been around here for a long time and I have watched many people come into this office and various stages of health, and I have watched so many of these people get the treatment you are getting from Dr. K. and I have watched them walk out the door and live their lives. You're going to do great.
In a matter of fifteen minutes, this woman impacted my life in a way that I can't even describe with words. When I left that office, I could feel my feet firmly on the ground, I could breathe deeply, I found my muster. It was as though the sky opened up and I was stepping back into the light for the first time in weeks.
I AM BACK. I'm not dying, what heck was I thinking? Do you know how much stuff I have to do?!
I'm so excited I can hardly contain myself. My pain is under control, thanks to my incredible doctor, I'm sleeping, my appetite is slowly coming back. Here's the best news, Dave bought me an iPad today because I'm going to be spending three days a week at my naturopaths office, each visit is going to take four hours and I am going to use that beautiful time to ...WRITE A BOOK.
I'm back on top. I want to thank my unbelievable friends for their care, they have been worrying, they have cleaned my house, they have made us dinner every night for the past two weeks, they look after Coady with as much love as they have for their own children, they listen to me, they cry with me they bring me presents and flowers. They are nothing short of extraordinary and I love them all so much. I want to apologize to my family for causing so much concern, please rest assured (mom) that I am okay. The final and most important tidbit of information I have is that I have made a firm and very positive decision in my treatment plan. I will be working exclusively with my naturopathic doctor who will be treating the cancer aggressively with various substances including high doses of vitamin C. His goal is to stop the growth of the cancer. If he can stop the growth, I feel very confident that within my own constitution, using effective visualizations, a healthy diet, ensuring that my immune system becomes bulletproof, my support network, sleep and a positive attitude, I can take care of the rest. I will either come to find a balance in my body that will allow me to live with the caner or I will simply will it away. Either way, let it come. What I want to be clear about, is that I will no longer be seeking the advise of a medical oncologist in Victoria. I have a lot of concern about the treatments being offered to me from there because they seem more concerned about killing the cancer that about the harm that may come to my body. And life is short but sweet for certain and I will be LIVING out my days. Thank you for your love and light, go tell someone you love them. I love you.

Tuesday, January 11, 2011

A special thank you

There was a period of time when I had sisterhood envy. I remember watching movies about travelling pants and sororities and coming away feeling lonely and sad. When I lost my best friend Katie in a car accident, my girlfriend count plummeted. I was at a loss, I didn't know how to establish a group of girlfriends and I felt incredibly sad about missing out on such a rite of passage as a women. I spent a few years floating from recreation class to recreation class becoming increasingly depressed about my lack of sisterhood. And then, like magic, here they were. I know there were a few integral pieces that had to fall into place to make these women appear. First of all, I became a teacher. This opened up a huge social circle that had been previously out of reach and then, and this is the clincher, I became a mother. All of a sudden, it was as if I could talk to and connect with any woman that crossed my path. It was unbelievable to me how easy it was to converse with other moms and not only converse, bond. The third and final piece was connecting with a couple of pivotal women who had their feet firmly planted in both circles. These women, escorted me in and lovingly accepted my friendship. Thank goodness, because today these women have become a lifeline and I don't know what I would do without them.

After my incredible new years eve good news, I took a hit. My oncologist suggested going off one of the hormone therapy drugs I was taking because it was causing me back pain. And so, after the appointment, I tucked my self into bed that night happily without taking my nightly pill. When I woke up the next morning, New Years Day, I could barely move. My back pain had gone from painful and uncomfortable to excruciating. I made my way downstairs and lay down on my couch and didn't move for five days. On the fifth day, I got a call from my oncologist, checking in on my pain situation. My reaction was not what he had expected and my report to him seemed to send him into the land of uncertainty. He suggested that maybe my pain was a result of the cancer spreading into my bones, a notion I completely rejected. He wanted me to have a bone scan done immediately. My response was a firm “no way”. I had a bone scan in October that came back clear and I don't believe for a second that the cancer has leached its way into my bones. Also, bone scans tend to be insanely stressful and are completely toxic, no thanks. Then he said he would look closely at my previous scans with a radiologist and get back to me. When he got back to me, he seemed satisfied that my scan looked healthy and suggested that maybe I consider an alternative hormone therapy or a “mild” chemotherapy. I told him that I am working closely with a naturopathic doctor and I am waiting for the results of a blood test that would determine the effectiveness of chemotherapy drugs on MY cancer.
This test will see my blood sample sent to Greece, where they will grow MY cancer cells and treat them with all of the conventional chemotherapy drugs available to see which ones work and which ones don't (seems like common sense doesn't it, I mean who would have dreamed of tailoring a treatment plan to the patient's specific body chemistry?) My oncologist agreed and said he would be in touch. Then he called me back a couple of days later, this time convinced that the cancer was indeed spreading and that he would like to run through the mild side effects of the chemotherapy. Let's see, hair thinning (not lost, this seem to be an important point for him to get across.) mouth sores, swollen hands and feet, diarrhoea etc. Etc. Sound's like a walk in the park doesn't it? Again, I declined his suggestion. I have to say, that I know my oncologist has my best interest at heart, I know he wants to take the cancer away. I know he cares deeply about my well being and the interest of my family however, I feel that he is acting from a place of panic and fear right now. I want to tell him that it's okay that he doesn't have an answer. I was aware from the beginning that there is no straight forward cure and I'm okay with that. But I'm not okay making decisions from a place of fear. I want to be informed and confident. I want to believe in my treatment. If this blood test comes back (a blood test that will cost upwards of $4000.00, I'm adding this because with out the support of my incredible community and friends this test would not be accessible, and for that I am beyond grateful) showing a positive result for a conventional chemotherapy drug, then and only then will I consider it.

Anyway needless to say, the time I spent in pain was a dark period that I have no desire to ever visit again. Pain is a crazy thing that messes with your mind. It wakes you up at three in the morning and forces you to confront fears that you have worked so hard to minimize. It makes you panic, it makes you sad, it makes you scared. But here, this is where my sisterhood stepped in. Before Christmas, I was given a gift of love that far exceeded any present I have ever been given in my lifetime. When I was diagnosed again in September, these women, my personal group of angels got together as women would have in days gone by. They collected bits and pieces, scraps and stories and together they wove a healing shawl. These women came together and stitched their loving intentions into a blanket that is nothing short of the greatest gift of love I have ever received. Every block, every stitch was created by love and as I lay on my back, I wrapped myself tight, knowing that I was healing, knowing that I was loved. And then of course, as any sisterhood would they began the rituals of taking care of thier own.

They rubbed my feet, they kissed my head, they tucked me in, they made my bed.
They soothed my fears, they feed my soul, they held my hand, they made me laugh. They continue to come to doctor appointments with me, they make me playlists, they make me soup, they make me chicken 1000 different ways. They have formed a human chainlink fence around me and they guard me with every ounce of compassion they own. They check in, they call, they stop by, they lie on the living room floor beside me. They tidy my kitchen, they bring me books, they look after my son and they feed us food that has been infused with pure love. They rally without being asked or expected. They are mothers, some of them grandmothers. They are healers, teachers, soothers. They are the sisters that have been hand chosen by circumstance and fate to walk beside me. They never falter, they are completely dependable. They laugh and cry with me, they pray with me and stay with me. They listen, they advise, they are brilliant, they are wise. These women are my safe house and I love each of them. I love each of them differently but all the same.

To each of you, and you all know who you are, I love you. You are healing me and it will be our greatest feat because I believe your medicine is the miracle that is going to take place. Thank you.