About Mutant - a plan is afoot!

Last Thursday I had my first appointment with my gyn-oncologist, Dr. Bradford. I was hoping to learn more about the Mutant (someone suggested I name the cancer, and Mutant seemed as good a name as any) and what the plan was to get rid of it.  During an internal examination, the Mutant started bleeding profusely.  I had been bleeding to some extent, daily, for two weeks and without realizing it, I had also having symptoms of anemia;  fatigue, weakness, dizziness, dropping blood pressure, etc. Dr. Bradford decided to admit me into the hospital to watch the bleeding, because my blood count was already low and the bleeding would make it worse. I think she was also concerned that I might hemorrhage.  I was also experiencing some pain, which was fairly intense. I stayed in the hospital overnight, and by late the next afternoon the bleeding had subsided to spotting and I was released.

The initial biopsy had indicated that Mutant was low-grade, which indicates that it is unlikely to spread. But when Dr. Bradford did the examination, she could see that it had made some significant changes since the biopsy two weeks before, and that it may involve my cervix as well. I had an MRI done while I was in the hospital and it showed that the uterine cancer was stage two, which essentially means it has spread to my cervix, but from what they can tell, not beyond.

My next appointment with Dr. Bradford will be to discuss treatment options.  I really like Dr. Bradford. She is sweet and compassionate, and smart.  I felt taken care of, which is important for me, because I have a tendency to slip into caregiver mode at the slightest sign of need.  Especially in times of stress.

Every day when Grace messages me and asks "How are you?" I have to fight the immediate temptation to divert her attention by answering, "I'm fine, how are YOU?" I'm learning to answer honestly, and to trust her ability and willingness to struggle though this along with me. That applies to most of my loved ones, even Brian.

The focus for now is to rest and do whatever I can to keep from bleeding again.  With rest and gentle activity I seem to be doing okay.  I've been thinking of the bleeding as menstrual bleeding, which is inconvenient but not too troublesome. In fact, what is happening is that Mutant is bleeding, the miserable sop, and that is not a good thing, especially when it goes on for weeks.  Oops.

One of the things that I have to get used to is the idea of pain as a signal that something is dangerously wrong. I live with chronic pain, which means I have conditioned myself not to react to it. If my IC bladder pain is intense, it may need to be coped with, but it isn't dangerous.  When Mutant hurts, even a bit, it's a different thing altogether.

I'm still not sure how I am doing.  I find myself wanting to blurt out, "I have cancer!" at random times. Like when a waitress asks if I want dessert.  Or a telemarketer offers me a free Bahamian cruise.  Brian asked me to do his laundry the day after we found out, and I whined at him, "Really? I have CANCER and you want me to do your LAUNDRY?!" He grinned at me and said, "Yup." And then we laughed. Ah, good times.

Of course I am afraid.  I read that radiation treatments on the pelvic area can burn the lining of the bladder. I was, like, "Ahhhhhhh!" What lining of my bladder? It's already compromised! In fact, the idea of radiation treatments now has caused so much stress that I keep forgetting the word "radiation."  Seriously. It slips from my mind, and I keep needing someone else to fill it in for me.

I'm okay with that, though.  I am surrounded by loving, patient people, and I feel cared for and nurtured.  I feel scared and safe, in pain and comforted and so very loved.  A plan is slowly coming together to deal with Mutant. For today, I am okay. And that means a lot.

Just a thought.

Oh dear...

Last week I had an uterine biopsy. It was a routine procedure, my periods have been getting very irregular and I've been bleeding or spotting almost daily.  I've also been having increasing pelvic pain that, as time has gone by, I began to recognize as not coming from my IC bladder. In preparation for a uterine ablation, a procedure that would shut down my menstrual cycle for good, the biopsy would just make sure everything was okay in there.

After the biopsy was completed, a quick procedure in my doctor's office, I was told that the results would take two weeks to come in, and that I would be given an appointment in two weeks to discuss them.

On Tuesday, less than a week after the biopsy, I received a call from my gynecologist's office.  The results had come in and my doctor wanted to see me right away. The receptionist asked if I could come in that morning, but I couldn't, so I made an appointment for the next day.

Then the fear hit. Why would they need me to come in sooner? If it's for biopsy results, there can only be one reason. Two if you include the possibility of a very insensitive gynecologist who forgot that he asked me to make an appointment in two weeks. And a receptionist who doesn't have a clue. Which doesn't describe Dr. Blake or his practice at all.

To be honest, the transcript of my brain for the first hour after the phone call reads like this - "Crap on a cracker! Crap on a cracker! Crap on a cracker!"

It turns out that crap on a cracker was an appropriate response. Brian and I went to see Dr. Blake on Wednesday and he told us that I have uterine cancer. I have cancer. That is a very odd sentence to write. It is impossibly simple, and yet indicative of a huge event, a life changing reality. I have cancer.

Dr. Blake is a sweet man, simple, straight-forward and kind. He reassured us that if I was to have any cancer, this is the one I'd want. With a very low mortality rate if caught early, I should be fine. Eventually.  After all, it's in a completely disposable organ. I was, like, how soon can we take this sucker out?

I have to admit that I wasn't caught off guard. In the day's time between the call to come in to hear the biopsy results and actually going in, I did a lot of research on uterine cancer. After all, what else could it be? I wanted to know as much as I could, and when I was told that I had cancer, that information helped me cope. I know that's not the way everyone works, but but it's how I work.

I still don't know much. I have an appointment on Thursday with a gyn-oncologist, and I'll know more then.  We'll know more then. Brian is an absolute rock.  The news hit him hard, as it would me if he was the one with cancer.  I feel like he is putting his anxious energy into taking care of me, in any way he can.  While my mind feels pretty calm about the whole thing, my body is reacting strongly to the diagnosis. I don't know whether I am in emotional denial or whether I'm at peace with it all, but physically I'm a trembling mess. Literally. I feel like I am perpetually shaking inside. Brian understands the way my body reacts to stress, and has been wonderful about helping me to physically relax. I feel like he is engulfing me with warmth and care, enabling me to melt into him and relax. I am so grateful.

I'm pretty sure I am going to be writing quite a bit about this in the future.  One of my best coping mechanisms is working out my difficult times "on paper," so to speak. I believe there is hope in shared experiences, the understanding that we are not alone in our trials, that we cannot underestimate the power of our stories.

It's time, now, to take a deep, trembling breath and step out onto the path, into the unknown future.  I may not know what lies on this path, but I know Who's walking with me, The Spirit of God in me, around me, behind and before me.

Just a thought.

Bell ~ Let's Talk

Today, Wednesday, January 28th, is Bell Let's Talk Day, an initiative from Bell Canada that focuses on raising awareness about mental health issues.  The premise is simple and one that is close to my heart, that if people will tell their stories and listen to the stories of others, much of the stigma and shame associated with mental illness will be replaced by understanding, compassion and empathy.

My sister, Dana, started the story telling this morning by sharing her struggle with depression. The truth is that my family is and has been full of brave, intelligent, capable, resilient people who have walked their life paths hand in hand with the darkness of mental illness, including the black dog of depression, and in my life, anxiety.

I can't remember ever not being anxious.  From infancy and probably even earlier, for various reasons, my body and brain, my personality and intellect developed while awash in a potent cocktail of stress hormones, specifically cortisol.  From a very young age, I learned to deal with overwhelming stress by "disappearing."  I froze, withdrew, and was compliantly, passively and quietly non-existent.

Anxiety controlled my life.  "Disappearing" could, at least in some respects, protect me from the outward stressors, but I could never get away from the inner turmoil.  As an introvert, when faced with a fight or flight trigger (which, due to the chronic anxiety, happened often), I withdrew.  Shut down. Shut up. My mind, though, was rarely quiet.  I was, and am an introvert, but I am also passionate, thoughtful, strong minded and full of questions.  I struggled with the silence. I was bright and opinionated, but repeatedly had to choose safety over freedom.

Because I had never been free from anxiety, I thought everyone felt this way.  As an adult, I became a Christian and began to grow in faith. I heard over and over, "Fear not."  It had the authority of a command, but there was always a whisper of hope attached to it.  Fear not. Was that even possible? The God I knew, the One who had rescued me from a life of darkness, who loved me in ways that I was only beginning to understand, would not ask something of me that wasn't possible, that He couldn't or wouldn't help me acheive.  As I walked with Jesus, through Bible study and with the help of faithful and honest counsellors and friends, I began to gain control of my thought life. The Scriptures and God's intimate counsel led me through a path of cognitive training that set me free from negative thoughts that kept me trapped in fear.

One of the aspects of mental illness that is often overlooked involves physical symptoms. A lifetime of chronic anxiety had conditioned and fitted my body to react in extreme ways to situations and circumstances that my mind, emotions and stress hormones were slapping danger signs on.  Retraining my mind, and even my emotions set me free to some extent, but I soon realized that my body had a mind of its own in these matters.  I was diagnosed with a chronic bladder disease called interstitial cystitis (IC) or painful bladder syndrome (PBS) when I was in my early 30s.  One of the most consistent and frequent triggers was stress.  A few years after the IC diagnosis, I suffered a heart attack. I had no markers for heart disease, other than the fact that I was overweight.  My blood pressure and cholesterol were low to normal, I had no family history of heart disease, I didn't smoke or do drugs, and I was young. The diagnosis was coronary artery spasms, a condition that was very susceptible to stress. 

It felt like my body was saying, that's enough! I had to face the possibility that cognitive training and the peace that I felt in God was not going to stop my body from reacting to the stress of life.  I prayed for healing, and I knew that it was possible.  I had experienced healing in my mind and heart.  As I continued to struggle with the physical effects of stress, I began to think about asking for help from my doctor. As in meds. I hated the very thought of it. Nerve pills. Oh, pshaw.

I saw it as an easy fix, a sign of my weakness.  I never questioned the strength of my faith. God and I had been though that when I first got IC. I knew that He could heal me. There was no question in my mind. I struggled with Him, when He didn't heal me, and we worked it out.  Somehow, though, I had gotten to the point where I believed that I had to tough it out to be strong, that being brave always meant pushing through the fear, pushing, pushing, pushing until I wasn't afraid anymore.  Unfortunately, my body wasn't getting the message, and the pushing through was killing me. It was one thing when the stress only meant searing pain in my abdomen, but when it also meant my coronary arteries spazzing closed, choking off the blood supply to my heart, I needed to pay attention.

So I went on meds.  The first time I took a anti anxiety medication, I was at home. The phone rang, and as I answered it, I was acutely aware of an odd sensation. Or, more accurately, an odd lack of a sensation. Fear.  Every single time I heard a phone ring, a swoosh of adrenaline would go through my body, burning through my stomach and bladder, trembling my hands, muddling my thoughts. Except this time.  This time my stomach stayed calm. My hands didn't shake.  I was amazed.  Is this what normal feels like?

Adding anti anxiety medication to the cocktail of daily meds that I take for the IC and heart problem was the right choice for me.  I still struggle with anxiety, and I have moments when my body spirals out of control and all I can do is hang on and wait it out.  I have discovered that sorrow feels very much like fear to my body. Sometimes I choose to deal with triggering events and the resulting flash of anxiety and pain through yoga, meditation, deep breaths, laughter and reaching out to loved ones. The amount of medication that I take daily works for the stress of daily life. Sometimes I take less. Sometimes more. I pay close attention to my body, and try to take care of myself. I am learning to nurture my body in the same way that my heart calls me to nurture and care for those around me.

Chronic anxiety is still a part of my life, but it doesn't own me.  I am grateful for the availability of medications that can help, for the grace and understanding of my family, and for the opportunity to tell my story, and to listen to the stories of others.  Yes, there are dark voices from the past, taunting, mocking, complaining voices that grew angry at me when I could not be what they demanded me to be, but the loving voices are stronger, bolder and most importantly, truer. 

I pray that as we walk this path together, we will be encouraged and emboldened to turn to the voices that are saying to us, "Tell me your story. It's okay, I'm listening."

Tell me your story.  It's okay, I'm listening.