Wednesday, May 28, 2014

My Superpowers are not Working

Just when I thought I had this breast cancer thing figured out, I have faced the harsh reality of real life. I am not 'Super Woman' or even 'Amazing Cancer Girl'. No I am just a regular, simple human - with no super powers, after all.

Today was my second day back at work. Almost everyone I have met with, over the last two days, has told me that they were surprised I was back so soon (a warning message if I ever heard one) and that I looked really good (ie. better than expected for 3 weeks after surgery).

On day 1, I was excited to be back and reengaging with the work I love. Kelsey walked with me from the ferry, both for moral support and to carry my stuff, since I'm not supposed to lift anything. I felt great, until about noon. Then I could feel my energy start to slip. It was hard to concentrate and I just felt a bit fuzzy. So much was going on, so much to process, it was just a bit too much.

I had a doctor's appointment, so I left early and took a cab to the cancer center. The doctor took out my final stitches and warned me not to over do things at work. Otherwise, she said that everything looked good, she renewed my muscle medication, and reminded me that walking is good, lifting is bad. I got home a little early, ate dinner and went straight to bed. I was exhausted!

Day 2 was even harder. My calendar was completely booked  with meetings. I had asked for a second laptop, so I could keep one computer in the office and one at home. Even laptops are too heavy to lug back and forth on the ferry every day. What I didn't consider is how hard it would be just carrying a laptop between meetings all day.

 On day2, I felt more engaged and capable mentally, not quite my old self but pretty good. By the end of the day, however, I felt much worse physically. As hard as I tried to rally, my body just couldn't give anymore.

Instead of walking the whole way to the ferry, I listened to my body and took the monorail halfway. Unfortunately, I was bringing home the second laptop, which I carried carefully only on my left side. Even though I tried to take it easy, carrying the laptop proved to be too much. By the time I hit the ferry, I was in real pain. When I got off and reached my husband's car, I hurt so badly that I was in tears!

Once I had a chance to relax and take my muscle relaxants, the pain subsided. I ate dinner and felt my energy come back. I am really tired, but more difficult is the realization that I am not even close to being back to normal.

As much as I want to move forward and get beyond cancer, I am still not fully healed. I still have more treatments and another surgery before I am finished with reconstruction.  Then there is the big challenge of chemotherapy to get through. I want to be strong and super human. But, this is a long term process and we are only just beginning the journey through cancer. Tonight I have to face reality. There really isn't a magic spell or any super power that can make it happen any faster.

Wednesday, May 21, 2014

Slow down, you move too fast

This morning I awoke to a cloudy gray sky.  After several sunny NW days, I was actually glad to have clouds.  They are a reminder to slow down and be still.  The cloudy sky allowed me to sleep later and to start the day peacefully.  Yesterday I called into a couple of meetings at work. Even though I was just listening in for most of the time, by mid-afternoon it was clear that I had done too much. I hurt and had a flare up of muscle pain, intense enough that Joe wanted me to call the doctor (which I did not do).

Today I am enjoying the stillness of a cloudy morning.  I took Butch for a quiet walk in the park.  It was nice because the clouds also kept most of the crowds away.  I could let him run and relax, rather than having to leash him.  I could pay attention to the small things, trees that have new flowers, baby ducks in the pond, the sounds and smells of spring.

One of the interesting lessons from cancer, is the importance of being in the moment. First because you are in a place where you want to see, hear, smell and feel the life around you, the Zen of being present. But even more so, because you are in a space where the future is so uncertain.  Right now I can't make plans beyond June 5, because I don't know what the timing or impact of my chemo treatment will be. I can't think beyond this summer, because there are so many unknowns about how I will feel and what else may be happening with my treatments. Its hard to imagine how I will feel or what I will want to do a year from now. And to imagine several years out, I feel like I would almost jinx myself if I think about plans for a distant future, at least until I get through this cancer journey.

I am a planner, so this is especially hard for me. I am always thinking about the years ahead, planning for vacations or saving money for retirement, imagining what we will be doing,... someday. Its hard to be in a space where my future feels so uncertain, where life itself feels so tenuous. And yet, it is also a relief to just let go. To allow myself to release the burden of trying to plan for and control the future, feels freeing.

If all I have for sure is today, then I can just be, just notice, just enjoy...what life is, right now.   

Monday, May 19, 2014

Sunny afternoon

Exactly two weeks ago, I had my surgery for breast cancer.  I remember the tears when I said good-bye to my husband and they wheeled me to the surgery room.  I also remember consciously centering myself and relaxing, as they moved me to the table and started the process to remove my cancer and breast. Once they started the anesthesia, of course, I quickly went to sleep and they carefully and thoroughly completed the mastectomy.  I awoke several hours later to my sweet husband's face - and the happy news that the lymph nodes were clear.

Today was a big milestone in my recovery.  I had another follow-up with the reconstruction surgeon. She was very pleased with how I am healing.  The wonderful thing today was the removal of the final drain from my chest!  This means I can shower, sleep without getting tangled in the tubes, and wear normal clothes/undergarments again!  It felt like a huge step towards being healed and reduces an area of discomfort that wasn't really painful, but was a huge hassle to deal with everyday.

Now I can work on building back my strength, improving my range of motion, and returning to activities and work.  I still have a fair amount of pain, especially muscle spasms in my chest and back.  The reconstruction process will still take a few months, and will include an outpatient surgery to complete the process in about six months.

And we can't forget about chemotherapy. I still don't have the details for that phase of treatment, as the oncologist is having an additional test done on the cancer tissue.  I don't meet with her again until June 5.  While it is hard to wait a couple more weeks, I am actually very happy to enjoy this break in treatment and focus on healing!  I will still have at least two doctor's appointments each week - reconstruction and physical therapy, so my schedule and my life are not exactly back to normal.

What is normal now anyway?  The ongoing pain and my missing breast are a constant reminder of the many changes cancer has brought to my life.  So are the many cards, letters, facebook posts, blog comments, food preparations, and so many other special ways that people have been sharing their love and support for my family and me in this cancer journey.  We feel the love from near and far.  We hope you feel it back from us, as well. 

As I sit in the afternoon sun, looking out at the flowers, birds, grass and trees at my house, I feel grateful for all that is good in my life.  I am so fortunate to have so many people cheering for me.  I am so lucky we caught the cancer early. I am so thankful that I work at the Foundation, where I have good insurance and so much support for taking the time I need for all the cancer treatments.  Yes, cancer really sucks!  I would not wish this on anyone. But, as I think of all the progress I have made these past two weeks, I really just feel happy and thankful!

Wednesday, May 14, 2014

Healing time

Its been awhile since I have updated this blog.  As I think back over the past week, I have done very little.  My primary work since May 5, my surgery date, has been simply to heal.  Its pretty mundane stuff, this cancer process.  Recovering from surgery is slow, small, and simple. My life has slid way down Maslow's hierarchy of needs. Instead of working toward the attributes of self actualization, I am completely focused on food, water, sleep and health.  The basic building blocks become everything, when you are recovering from a significant surgery. Making a positive impact in the bigger world, will just have to wait.

Over the past week, I have been consumed by the small stuff of life.  Friends from work have been sending food each night - so we have had to do very little cooking. My daughter and husband are caring for me and keeping the rest of the household in order. I have no responsibilities, no work to do, nothing to contribute.  So all my time has been spent on recovery.  One thing that means is lots of sleep - for sleep is where a lot of healing happens.  The first few days the pain was strong enough to wake me from sleep as soon as the medicines wore off.  Four hours was the duration of pain relief, so there were lots of afternoon naps and resting during the day to give me the needed sleep time for healing.

Then there were activities required by the doctors. We had a whole schedule for attending to all the medications for pain, for muscle spasms, for fighting infections.  I came home with two surgical drains to keep fluids from accumulating in my chest. The drains had to be emptied, measured, recorded, and reset several times a day. There were stretching exercises, but also a long list of things I could not do.  My right breast was removed, so my right arm not only hurt, but was not to be used for anything that could cause strain on my surgery site.  No lifting, no pushing, no pulling.  The hardest thing was to not use my right arm and hand to push myself up from bed or a chair.  Anything with force against that arm could open the sutures and require a trip to the ER.

When I am busy working full time and consumed with all the chores at home, I often wish for quiet time.  I yearn for moments to reflect and be still.  Now that I have nothing but time, I am restless and anxious to return to the busy schedule that I so often dread.  This past week, I have had to slow way down, to really pay attention to my body and the healing process. Being comfortable doing nothing does not come easy to me. As much as I want to get back to my normal routine, I feel the pain and the fatigue when I over do right now. The pain quickly reminds me that my healing requires stillness. So much lies ahead for me in this long cancer journey.  Learning to accept the quiet and to enjoy being patient and still, that is my lesson for this week in cancerland.

Thursday, May 8, 2014

My Personal Pity Party

I believe in the power of positive thinking. I know that surrounding myself with people who are supportive and care about me will help me heal. I choose to focus on what I know, rather than worry about all the possible bad things that might happen. I am strong, healthy and ready to do my best to heal. These are some of the messages of positive self-talk that I practice every day. Keeping a positive focus has served me well as I have embarked on this cancer journey.  Well, except for the day of my Pity Party.

The Pity Party happened just a couple of days after I first met my cancer surgeon, Dr. Dawson.  She scheduled an MRI to see if there were other potential sites with cancer in my lymph nodes or my other breast.  The only day that was available for the MRI that week, was the day I had signed up for a class I had been wanting to attend for months. Joe was working on our Gorge house, so I went to the appointment on my own.  I started the day feeling sad, lonely, and pretty sorry for myself.

The MRI itself was not bad at all.  I just had to lie face down in a tunnel without moving for 20 minutes. I closed my eyes and let the sounds of the machine wash over me.  It was like some weird electronic concert - do, do, do, do. Waw, waw, waw, waw. Nah, nah, nah, nah. Boo, boo, boo, boo.  It was actually pretty relaxing, in a claustrophobic, noisy tunnel kind of way.

The Pity Party started just after the MRI.  My appointment with my cancer surgeon was not for 2 hours.  Not enough time to go to the office, but too much time to sit and have coffee.  I had too much time, and too much to think about.  It was a cool day, but not raining, so I decided to take a long walk.  I thought it would distract me to walk around Capital Hill, but instead all I could think of was the MRI.

My doctor had warned us that the tracers for the MRI could "light up" with small spots of cancer everywhere. She insisted that it was not something to get worried about.  She was looking to see if my left breast had any suspicious tissue and whether there were cancer cells in any lymph nodes.  The MRI would not rule out the need to biopsy a sentinel node, but could give an early indication about potential cancer sites.

As I walked the streets of Capital Hill, fear quickly crept into my head.  I tried to notice the spring flowers, but all I could think of were the "lights of cancer" on my MRI.  Before I knew it, I was in tears. I was feeling very sorry for myself.  I was, sad, afraid, angry.. and actually a bit lost.  While walking in a fog of emotions, I had not paid attention to where I was going.  Being lost is one thing that makes me crazy with frustration, so now that emotion was added to the mix. I let the tears flow.  I sat down on a bench and sobbed for a while. It was my first real release of emotion since I heard the cancer word.

As much as a Pity Party can help release emotions, at the end of my little crying jag, I still had cancer and I still was lost.  I looked up, checked in with Siri as to my whereabouts, and headed back to the cancer center. I brought the dark clouds of fear and sadness with me to my meeting with Dr. Dawson and prepared myself for the worst. Dr. Dawson, however, was very cheerful.  She handed me my MRI results, looked me in the eye and said, "this is very good news, your MRI is clear". 

There were no signs of cancer in my left breast or in the lymph nodes, although she cautioned that we could not rule out node involvement until surgery.  I was speechless.  I also felt pretty stupid.  I had worked myself into a total Pity Party, for no reason.  All that fear, sadness, and negative energy,were just a waste of my time.  Even if the news had been bad, worrying for 2 hours and getting myself all worked up about it, would not have changed the results, either. As I left the cancer center, I now noticed the flowers, the birds and the beauty of a Seattle spring day. I am sure there will be plenty of opportunities ahead to feel sorry for myself and to be scared, but when I do I will remember the Pity Party for my MRI, where cancer didn't even show up.

Wednesday, May 7, 2014

The Art of Letting Go

As they wheeled me to the surgery room, to remove my right breast, I found myself reflecting on all that has changed for me in this past year. I have been through so much change, that at times it feels overwhelming.  I started a new job with the Gates Foundation and my husband, Joe, retired from teaching.  We moved to Seattle after living in our Columbia River Gorge house for over 20 years. We bought a new house and started learning a new way of life.  Everything is hard when you move, finding new doctors, dentists, hair dressers, even new grocery stores makes you feel unsettled. I found myself fighting the personal transitions, while Joe embraced the changes.  We moved for my job, and I love my work and the people at the Foundation, but Joe is the one who has found his people and his routine. The personal side of these changes has been harder for me than I ever expected. I am still working on making this place into my home.

Shortly before my diagnosis, we had decided to sell our Gorge house.  I struggled with that decision, as well.  We raised our three kids in that house, it's rooms are full with a lifetime of memories and possessions.  I thought I would live there forever. That was my place, my happily ever after. As I was struggling with all these life changes, there were so many things I was clinging to from my previous life.  Then I was diagnosed with cancer. 

As I heard the "C" word, my health and survival became my singular focus. The more I began to understand about the long journey to remove this disease, the more I realized that the "stuff" didn't matter anymore.  All the possessions, the things we have accumulated over 30 years of marriage, even the house we built with our own hands were suddenly secondary.  As I contemplated letting go of so many things that I had once treasured, I realized that the process of letting go was just what I needed to face cancer. I needed to let go of the things that hold me back.  This is a time to simplify and move forward, not a time to hang onto the past. As I grow in my acceptance of this disease, I find that it is easier to let go of the old house, the stuff, and even my self image.   By lightening my load, I can focus on the people who give me love and support, and the small things that give me joy.  It feels like a feng shui on my whole life. Through my cancer journey, I have lost my right breast.  I will lose my hair and, worst of all, I will not be considered healthy for a long time. But I can accept that price to ensure that I am ready and open to whatever treatment is necessary to save my life.

I  am ready to let go and surrender to the process of my cancer treatments.  What I can't let go of is the love and support from you, my family and friends.  In the end, that love and support is all that matters. Your love and support will carry me through the many months ahead in my cancer journey. The rest is just stuff.
 


Sunday, May 4, 2014

Sharing the news

Telling friends and family that you have cancer is tough.  When I first found out, it was tough because it was so hard for me to even say the words out loud.  Just saying the words made it real, scary, almost unthinkable.  It also made me all about cancer - once you say "I have cancer" it becomes everything.  It feels like it suddenly defines who you are.  I want to say to the world, I am still me, I am not just cancer!

I did not want to tell anyone until we talked to our cancer surgeon.  I needed to have a few answers about what was ahead, I needed to know what this meant before I could tell my story.  After that day when I met with my surgeon, I could only call just a few people.  I called my sister, Lisa.  She had been through some difficult things, she had leaned on others to share her news, she knew what it meant to need others to speak for her.  I told her and asked her to call my family and tell them. I also asked her to ask them to give me space, a few days before I could talk.  It was still too hard to say the words, "I have cancer." 

I sent a few emails out to friends, telling them the information and the prognosis.  Telling them I needed their support, and asking them not to call.  Emails could be read when I was safely at home, when I had the space to laugh, or cry, or fall apart.  Talking to people live, no matter how much they wanted to support me, was just too heartbreaking.

At work, I sent out an email.  It had all the facts and also asked for space and patience.  It went to my team, the HR leadership, the leaders at work that I directly support. Although I was not worried about privacy or afraid of people knowing, I was afraid of how I would respond.  People were kind, supportive and caring - but that brought me to my knees.  I could not be professional and strong, when people were worried about me.  I was worried too, scared for me, but even more I was scared and worried about my husband, my kids, my extended family.  The tears were so close to the surface, it made it hard to think about anything except work.  While I was in that professional space, I could be there and be myself.  When it became personal, all my deepest fears came right to the surface.

It took a few weeks of doctors appointments, research, reading and just being with the
diagnosis before I settled in, accepted the cancer and became at peace with this new me.  I am not cancer, I am still Julie.  This has happened to me, but it does not define me, I am still my same old self.  I can't change the diagnosis, but I can choose how to approach this journey.  I did not deserve this, I did not do anything to make this happen.  As my surgeon told me, this type of cancer is random.  Random.  At first that was unsettling, but now there is some comfort in knowing that it could really just be random.

So, I am going into my surgery calm, at peace and ready to move through cancer treatment without hurt, blame or anger, but with love, peace and acceptance.  I know I am strong and I know I am willing to do everything to survive.  The path to healing is through love, support and caring.  I have so much support from so many people. I have all the love in my heart for my family, friends and everyone with me in this journey.  That is all I need....that is all that really matters. Thank you all for your love.