This too shall pass

16 05 2013

I wish someone had explained to me earlier in life that experiences, both good and bad, are the sum of who you are as a person. And like anything else hung on the fragile thread of time, has a beginning, a middle and an end.

Seems pretty obvious to me now at 42.5 years young but if someone had sat me down at 25 and explained this to me, would I have lived my life differently?

I was pretty healthy up until I was diagnosed with cancer. I was rarely ill, exercised regularly, ate reasonably well. So when I got sick from the treatment and it’s after effects which have lated two years now (and counting) I begin to wonder am I ever going to feel healthy again? Like the person I was before all this? Probably not. I just realized that this experience today just taught me the lesson above.

So when you are 40 and healthy and hate being photographed because you’re too (WHATEVER) realize how beautiful you are. I look back at pictures of myself precancer and wonder why I hated being photographed. Stupid superficial vanity. Youth is wasted on the young, and beauty is wasted on the beautiful. Now I see the real life. The beauty in struggling everyday to gain back what’s yours. And never stopping. It’s hard and real and people don’t look at that kind of stuff to find beauty, they seem to prefer the more obvious sort. But it’s there. Somewhere deep inside me where it’s cold and it’s dark. It has funny scars. And I see it, because that’s where I have to find it now. And it will grow like a seed that was stored in a closet. I saved it just in time before it died. My self esteem has been crushed by cancer and the rejection associated with it. I have to nurture myself back to whatever health I can muster at this point.

And this period of recovery is a time that will pass too because life is unfolding everyday in ways we can’t even imagine. Sometimes it’s comforting to know that there’s a natural end to every situation that I find insurmountable. It’s just the way the universe works.

Kure Beach, NC

Kure Beach, NC

The back nine and how to prepare for it

10 05 2013

March was my two year cancerversary. Two years since diagnosis.  To say that I tried to sit down and write a thousand times would be an understatement. There have been too many obstacles recently to even put my thoughts in order. But the other day I gleaned this little gem that I thought was worth sharing.

I broke up with M. The person who cared for me all through treatment. Who was there for me when my family members and friends weren’t.  To say that my illness was a burden on our relationship would be painting it lightly and I am suffering a horrible amount of guilt about how my illness has compounded the issues that I was already challenged with. Like depression. And when you are both dancing that same dance it gets hard. Hard to communicate, hard to really be together. My inital reaction this time, like always is to get angry. I am such a primitive creature in relationships. I try to analyze, to listen. Unfortunately I suffer the affliction of those who can’t keep their mouth shut when made passionate. Mea Culpa. It’s not as if I don’t see or admit my own faults. I actually tackle them fairly openly. The problem with the truth is people don’t want to hear it. And yet I feel the truth doesn’t care.

I realized this week in the midst of scheduling my bone density scan, my genetic testing for a new hereditary allele, a visit to my PCP and one to the gynecologist..(you see what my week looks like) that this hasn’t ended. Just like it hasn’t ended with M. because I am still in love with him. We had dinner and there is so much still there. Despite my faults, his faults, it’s hard to forget about someone who saw you at the BOTTOM and loved you through it. I mean really the bottom. It’s hard to be judged on 2 years more difficult that most people face in a lifetime. It’s not an excuse. It’s reality. That I recently had cancer and it could come back. And that I’m in love with M. and he might not come back. No matter what I do. We are still talking and taking it slow but I know there are no guarantees. No wonder I feel out of control.

It’s really the same letting go that has to take place to be happy. My happiness depends on putting my faith into the fact that this relationship will work out if it’s supposed to. And that it won’t work out if it’s not supposed to. And that either way I will be need to be focused on being happy.

Post cancer treatment and relationships are like a desert. Where I walk for miles looking for a landmark, something to guide my way. Am I eating the right things? Am I being unreasonable with my expectations in this relationship? It’s all doubt. For me living a healthy happy life and relationships are the same problem.  There’s no map, No footprints. No role models. Just statistics and vauge reassurance at increasingly distant intervals. No wonder I have anxiety.

Back to Golf. A metaphor I prefer because it’s so much like life. And way more scenic. You can spend your whole game talking about the shot you should have made. Or why things are bad because of where you lie. But the truth is that you can only play the ball where it lies. Golf presents you with a set of situations and you react to them. Just like life.  So I am going to stop being sad because the life I imagined I would have is better than where I am. That I’d be happily married and not worried I am going to die alone. These are realities but there comes a time where you have to accept that’s where your ball is.  It’s unproductive and counter intuitive to think any other way.

Play the game from where you are because that’s the game that will make you happy.

It was like a frigging lightning bolt or the voice of God  the other day. I realized all the crap stuff I have to do with my kids when I am exhausted because I have no help, there is joy in it. If I look for it.  The smallest achievements at work are something to celebrate because two years ago I could barely climb the stairs. No party being thrown except the one I throw for myself in my head. Perspective. I play the game from where I lie,  the best I can every day. My happiness depends on it.  I am keeping score and it matters. Everyone focuses on their own score card and there are no ribbons or awards ceremonies for handling tough situations well.

There is a subtle urgency to life now I notice that other people seem not to feel. I feel like it makes me try to live my time better. Or maybe it’s PTSD.


Send lawyers, guns and money

26 08 2012

After nearly a year and a half, the insurance company of the man who ran me down in a cross walk is finally going to acknowlege that I may in fact be owed something. His clients actions cost me my job, my mobility and a large chunk of flesh where my left eyebrow used to be. Those are the things that show outwardly. What they won’t be able to assign a numerical value to is the flashbacks to the accident, the moment when my face hit the hood of his car, right about where the windshield wipers sat, waiting to carve my face into slices that the surgeons at BI spent 6 hours trying to close up. I remember them discussing above me in my confused and blinded condition that I may lose my left eye. It seemed unreal and cloudy through the haze of concussion. But that would pale in comparison to the revelation of the MRI. That I had breast cancer. And everything went in the backseat to treat that first. They won’t be able to assign a numerical  value to the months of horrified looks from the people around me reacting to the gory horror movie makeup that wasn’t fake. That even still I find people studying that twisted tangle of scarring all around my eye when they talk to me. And that I must learn to accept it all. Or harder still, move on from it.

So now that I am well enough to entertain the discussion of yet MORE SURGERY, it’s going to be on my face this time. I am looking forward to them fixing what I no-so-affectionately call my monster eye. The inward scars will never go away. I have an ankle that will never work quite right again because of the weight of the car travelling down the lower length of my leg, trapping me underneath, helpless to do anything but scream out in pain.  I will always remember the cruelty of how people treated me in public while my terrible facial injury healed. One woman even approached me in a restaurant and suggested that I cover up my disgusting eye so that she could eat.

So I learned that we live in a society where people care very little. They don’t take responsibility for swerving around two cars because they didn’t feel like stopping and changing my life forever. In that moment another person robbed me of my security, my prosperity, my beauty, my health and even though a year and a half has passed, I have not been compensated in any way other than having these experiences to learn from. To learn that most people want to blame the victim, whether it’s a cut on your face or a tumor in your chest, I must somehow be at fault. That my negativity or anger has brought me to this place where I cashed in my karmic chips somewhere in the middle of the Arborway. It’s easy to say when it isn’t you how you would handle the months of uncertainty. “Please. Tell me how YOU would have handled it”, I think to myself when people tell me I have no right to be angry.  And in the meantime the lawyers will decide how much is fair to give someone who will never be the same.

July 13 blues

12 07 2012

Sixteen years ago tomorrow I was the bride. We had a tent reception and Hurricane Bertha was my uninvited guest. Tomorrow I am having my second surgery in reconstruction from Breast Cancer, and approaching the third anniversary of my divorce.  I am having my tissue expanders removed and silicone implants put in. You’d think they were ripping my heart out and replacing that because all I can do it cry.

I pray to Saint Peregrine all the time. He healed himself with patience. A thing I lack completely in every aspect of my life. I think about you Saint Peregrine, every day. And how I can be more like you in the absence of virtues like patience and often gratitude.

The problem is that I mourn for the person I used to be. I was independent and confident. Now I am forced to be dependent and afraid. I don’t know if I will ever be able to live again with the fear that cancer has brought to my life. I am not who I was. I mourn this every day and no amount of crying can make it better.

I hope tomorrow is a step towards feeling more whole. More Myself. Because this person is a stranger. A weepy stranger with weird boobies.

Happy Cancerversary to Me

7 03 2012

I have been rolling this post around in my mind, like a smooth stone at the water’s edge. Back and forth I go, wondering whether this is a post of anger or celebration. Angry because when I look back at what I have been through I see how changed I am by the experience. No longer the same. Celebratory because some people are not as lucky as I to even have a first Cancerversary to celebrate. Let me explain.

My story actually starts a few days before, March 19, 2011 to be exact. It was Saturday and just starting to feel like spring when I was hit by a car walking home from dinner with my boyfriend. I received 250 stitches in my left eye, two orbital fractures, a broken pinkie finger, lacerations all over my face and legs, and a right ankle fractured and sprained in 5 directions and a pretty substantial concussion that knocked me out cold. I was transported to the hospital and something amazing happened. The radiologist assigned the task of looking at my internal organs to make sure they weren’t imjured noticed something in my chest. At first they thought it was fluid in my lungs but upon closer inspection it was revealed to be a solid mass. I was referred to a Women’s Imaging Center on March 22, 2011 for testing.

The following day I had a mammogram, a needle biopsy and an MRI. I remember being so sore from being hit by the car there was some doubt about my ability to actually lay face down in the MRI machine. I did it, and the technician told me that I might be the toughest woman she ever met. At that point there was still hope that it would be nothing, but as the hours ticked by I knew it was something. Then at 10 AM on March 24, 2011 I got the phone call that changed everything. That I had Breast Cancer. I sat on the floor and cried in the dark of my bedroom.

The next several weeks were a flurry of appointments to determine whether I would be able to even begin treatment. There’s not a lot of literature on patients with severe head and crush injuries starting chemotherapy. I hope that I have provided some information to the medical literature on this topic because doctors were in a quandry half the time. Do they put me on blood thinners? Would I be able to take the general anesthesia to install the port in my chest? Way too many questions when I was completely unprepared to handle them. That first month of chemo is a haze, because of my head injury and the secondary insult of cytotoxic drugs.

One of the things that people should know about cancer treatment is that it’s really impossible to plan for all the changes that are about to take place. All the unexpected turns that the path can take. When you stand at the entrance of the dark scary forest of treatment it seems like a pretty direct path to the other side. However as you get closer to the end you realize that the winding isn’t stopping and that there are really no areas of your life left that cancer hasn’t touched in some way. I was really lucky to have what they call a “good response” to chemotherapy, meaning that it shrank my 5.1 cm tumor down to about 1.5 cm prior to surgery. I elected to do the chemotherapy first so that the possibility of getting a good margin on the surgery would be increased. This “good” response also included numbess in my hands and feet, weird space out sessions, paranoia, memory problems, gained 33 pounds and all my hair, eyebrows and eyelashes fell out. This is where I got to investigate Unexpected Cancer Door #1: people’s reactions to your appearance. I could write an entire book on how much this experience effected me. Most days I am proud to say I handled it with humor and grace. Some days I didn’t and for everyone who had to listen to me sob when I wasn’t recognized in public because of my drastic change in appearance, I’m sorry.

After 8 rounds of chemotherapy I got the month of August off to prepare for surgery. I had a double mastectomy on September 6, 2011. I elected to have a double mastectomy based on my family history and my desire for an even reconstructive appearance. When they performed my mastectomies, they implanted tissue expanders to gradually stretch my skin to create a pocket for the future implants in a later surgery. If this sounds a bit like medieval torture, it is. Amazing what the body can do.  Little did I know this was Unexpected Cancer Door #2: How suddenly having a couple of body parts removed changes everything. I mean I knew it was going to be rough, but there’s really no preparation you can do for that first time in the mirror. It took me about 2 months before I could take a shower without crying because of how my body looked. But I am moving on, learning to love the new me. My reconstruction is going well, I am blessed to have one of the best surgeons in the country and I am fortunate to be a candidate for it at all.

I started radiation treatment on October 1, 2011. I have to say that radiation was by far the most difficult part of my treatment. Maybe it’s the insult of dots being permanantly tattooed on my body, so they can line me up accurately on the machine each time. Maybe it’s the fact that all the techs told me not to worry and then closed a 10,000 pound metal door between us. Maybe because by the end it was nearly impossible to lay there when my skin was already blistered and broken. Maybe because it made my armpit and ribs stiff and brittle and sore. But I hated radiation. It made changes in me I could feel happening. That I can still feel happening. And that’s Unexpected Cancer Door #3: That treatment isn’t the end. Cancerversarys aren’t the end. Good lab results aren’t the end. Yet there is something to celebrate, whatever beautiful life there is to be lived. We are all changed by experiences. The entire course of my life changed in the middle of the road. It’s finding out if you’re the kind of person that can enjoy the scenery on the detours that is the hard part.

Insult to Injury

15 02 2012

Today is the six week mark since I finished radiation treatment, the last event in the triathalon from hell. They told me that it would likely take about 8 weeks to start feeling better again, but I feel like I am on the upswing. Now that the fog of crushing exhaustion is lifting, my mind turns to the damage done in the name of treatment.

Most Breast Cancer patients have really limited mobility on the treatment side after radiation. I was lucky enough to have pushed myself really hard (typical of me) in the first weeks following surgery, so I wan’t required to attend the weeks and weeks of PT that most patients go through. I joked with my surgeon that having the water glasses nearly out of reach on the high second shelf in my kitchen was my secret to homemade physical therapy. But that wasn’t far from the truth. The reality of it is that everything you do after treatment reminds you of what your body just went through. The weird, twisting, internal pain that is a sign of the thickening muscle fiber and the scar tissue is never far from my mind as I try to go about life normally. The weakness and heaviness in my left arm is a constant reminder of the lymphatic issues I have after the removal of two of my nodes on that side. The worry that every cut on that side of my body could lead to an infection I may not be able to fight off.

As I bathe, my hands pass across the parts that are scarred and hardened from treatment. I imagine the soap penetrating my skin, washing away all the horrible insults of radiation burns. Everyday I stretch, imagining that the damage can be lessened with moisturizers, massage and yoga; hoping that years down the road my flexibility is not compromized by the treatment that hopefully will be my last. Because of the location of my tumor, a portion of my heart was to be in the field as well. They set up blocks to protect it, and I can’t help but think of this as a metaphor for my life post-treatment.

It’s hard to return to “regular life” after treatment. People ask if you are “cured” and you have to explain to them that you won’t know until you live 10 years, their faces twisting because the answer makes them uncomfortable. They want to hear that everything is just fine. Running into people who shunned you during treatment, because your appearance and diagnosis were just too much for them to handle. In the post-treatment world this may be my biggest challenge: How to allow someone you were once close to back into your life after they ignored you when you needed them most. I feel like this is the part of treatment that hardened my heart, not the radiation. I want to be gracious, I want to be above it. I also want them to know how much it hurt me and that I may never be able to get over it.

So I stretch and I set up my own blocks to protect my heart by controlling my contact with people who were once family, friends and relatives.  Each day, my muscles, my soul and every fiber of my being. Reaching. Reaching for normal.

February 10, 2012

A Letter to Stupid Cancer: Worst Roomate Ever

6 01 2012

You moved in March 24, 2011. That was the day that I dropped the phone and cried in the dark. I vowed that I would not let you change my life, but despite my efforts to defend myself from this new room mate that I never asked for you took away plenty. So to mark the completion of my treatment and hopefully your complete eviction from my life on December 1, 2011 I have compiled a list of things about you I will not miss:

1. I will not miss the weird haze of chemotherapy. It reminded me of the Viewmaster Viewer Negatives of the 70’s. I began to think I was seeing the opposite side of life, where people’s images were much lighter than the world around them. I don’t know how to describe it but it was disturbing. Let’s include the creepy space out sessions, memory loss and confusion as well as the numbness in my hands and feet. None of that is fun.

2. I will not miss taking enough steroids and benedryl to choke a horse and put it to sleep. Then you wonder why I gained 33 pounds. Um. Cause you’re messing with me!

3. I will not miss how you tore my self image to the ground and stomped on my sexuality. I am tending this garden daily now to hopefully repair whatever remains whole, hopefully to blossom again when reconstruction is done. But there aren’t words to describe how many tears I have shed because of the insecurities and fears that you replaced my hopes and dreams with.

4. I will not miss the feelings of rejection and lonliness. Its hard to describe the scope of this and how it impacts you every moment of every day until you have lived through treatment.

5. I will not miss how after the insult of surgery and reconstruction I couldn’t sleep. Then when I started to feel better radiation started. It was a race between who would be cooked first me or my left breast. I won by a nose.

6. But most of all I will not miss how even though you moved out in September when I had surgery,  some radiation to make sure you didn’t leave anything behind in November. Your lease to my life was up December 1, 2011. Yet I am still consumed with worry and fear in the horrible wake you have left behind. I know I will get over this too. I have proved to be that strong.

I never invited you into my life and I hope you never return. It’s as simple as that. I am putting you in my past. Goodbye Stupid Cancer. Please….