Reconstruction - Oct. 11, 2014

Last Friday, Oct 3, I started my day with a hike up the hill to the hospital for a bone density scan. This will set a baseline for monitoring the impact of the aromatase inhibitors on my system, as bone loss is one of the most serious side effects. Happily, hiking the 13 blocks up Seattle's First Hill was not so bad! I feel like my strength is slowly returning, and so walking up the hill without struggling really feels good.

 

After the scan, I also walked back to work, enjoying the crisp morning air. I noticed small things along the way: fall leaves, morning shoppers, people walking their dogs. The sun was out, I was feeling good. It was a great start to my day. Later in the afternoon, after a day filled with work meetings and preparing for my business trip to the east coast, I headed back up the hill to meet with my plastic surgeon. This was my pre-surgery appointment for my reconstruction surgery, which is scheduled for October 16. The discussion with my doctor was a bit sobering. Joe came with me to hear the details about the surgery and recovery, I think mostly so he could hear all the restrictions from her firsthand.

 

This final surgery turns out to be a bit more involved than I expected. The doctor was pretty clear that I will need to stay at home for at least the first week, and do no lifting or physical activity involving my upper body for 3-4 weeks. She warned us that women can cause serious complications if they return to regular activity, too soon. It was hard to imagine another setback and recovery period. Just when I was starting to feel strong and healthy, now I will be back to work on recovery from another treatment. That is the hard part about cancer, you actually have to hurt your body in the effort to heal.

 

This final surgery is especially hard to prepare for as it is not about treating the cancer. This time I am going through surgery, and all the associated pain, for reconstruction. I am going through this to replace the breast that had cancer, and was removed during my mastectomy. I continue to struggle over whether reconstruction is the right choice for me. I have already completed much of the process for reconstruction, so at the very least I have to go through some surgery to remove the expander that is currently in place. Still full reconstruction is a complicated process. I am sure that a year from now, I will know better whether this was the right choice for me, whether it was worth all this new pain and recovery. But right now, it feels like a big price to pay, just to have an artificial breast that will never be the same as the one I lost to cancer.

This process is complicated, both physically and emotionally. It leaves me with lots of questions. More and more women are choosing to not have reconstruction after mastectomy. I have finished having kids and my breasts have already served their primary purpose. Does it make me less of a woman if I only have one breast? Is it vanity, or the need to feel normal, that made me choose reconstruction? Is it really worth the pain and recovery of another surgery? What if the cancer returns and all this is for naught?

 

I also wonder if the emotions I am feeling are more about the reconstruction of my life, than the reconstruction of my body. I can only hope that as I put this final surgery behind me, my life can return to something close to "normal". I hope I can return to something like what my life was like, before cancer.

A Change of Seasons - Sept 14, 2014

Two weeks and two days after my last chemo (last!) and I can feel a change in the air. I am sitting at Battlepoint park, playing with Butch. As I toss his ball, I look around the park and see hints of fall everywhere. There are geese on the pond, ready to begin heading south. The wind rustling through the drying leaves sounds like a whisper saying "change". The summer colors have softened to browns and golds, with a few scattered patches of red and orange. The smells have become dusty and old. Everywhere I look, fall is in the air.

Last time I posted, I spoke of summer lost. Today the fall breeze reminds me that every ending also brings something new. Fall is not generally a symbol of new beginnings, that is usually Spring's promise. But this year, Fall feels like a season of closure and of promise for me. It's the end of my treatments and surgeries. It marks closure for most of the cancer process. And with that closure, it also feels like the beginning of a new season for me.

Maybe it's the cool air and the end of summer activities in the park, but as I walk with Butch through the quiet of the autumn park, I feel just a little stronger today. I feel like my old self is starting to return. For the first time since chemo 4, I have been able to walk the loop without feeling winded and fatigued. I am beginning to be able to see past the pain and discomfort and really enjoy my walk again. It's allowing me to notice the little things that bring me happiness; the nature around me, kids playing, quiet time with my dog.


The seasons are changing and summer is over. Fall brings me new hope, new energy, and quieter time to recover.  Not to mention, this is the season of Thanksgiving. It's a great time to remember that I have so much to be thankful for today!

Summer Lost - Sept 10, 2014

Lisa took summer with her when she left. The gray sky is back and my mood has turned to melancholy. You can see fall everywhere in my favorite park. The cold has licked the leaves, turning their tips to gold and red. How did fall come so fast, and where did summer go?

 This summer was supposed to be our time. A time to explore our new city - Bainbridge/Seattle, and the surrounding outskirts. It was supposed to be a time to celebrate - our 30th anniversary, Kelsey's homecoming from Africa. We had plans, vacations, so many hopes for this summer.

 Instead it has been time lost. Since my surgery, on Cinco de mayo, this summer has been all about breast cancer. It's been countless doctor visits. Treatments, shots, pills, recovery. It's been terrible side effects, fatigue, pain, lack of appetite, metallic tastes and smells. It has been a small world for me, centered in my house, or often, in my bed.

 There have been no rafting trips, no Sea Ranch, no hiking, no swimming. Even dinners out are robbed of the familiar tastes of good food and a nice glass of wine. A friend asked me recently what I am doing to bring joy into my life right now. The question felt like a punch in my gut. Joy? I really can't remember joy.

 Which is not to say that I haven't had happy moments this summer. Small things like watching nature, taking Butch to the park, reading a good book, sitting by our fire pit. The best times have been visits with family and friends. Special moments of connection, support, love.

I'm returning to work today, back to the office for the first time since my final chemo. I've been able to call into meetings and work online, but I'm still weak and tire quickly. This will be a test of my strength - do I have the stamina for the commute and a day in the office?

I hope I can begin to return to a regular schedule, a regular life. Seeing the kids waiting for their school buses reminds me that life has it's cycles. Even though this was my lost summer, fall is beginning and it's time to focus again. I'm ready to be past chemo and past cancer. I'm looking forward to the change of season and the colors of fall. Hopefully it's the start of a new season for me.

Cancer updates

I have not posted on this blog for some time, as I found it easier to post on Caring Bridge.org However, as I wind down from cancer treatments, I want to move some of those posts here and use this blog to do updates on both cancer and other topics.


What you will see is a series of posts that are the Caring Bridge posts moving over to this site. It will be in chronological order, but they are old posts from that site. Hopefull this is not too confusing.  Thanks for sticking with me through all this.

Julie

The Aloneness of Cancer

There is an aloneness about cancer, a separateness, that makes me feel apart from the rest of the world. It's not the kind of isolation that comes from being intentionally excluded, but rather knowing that you are different and cannot fit in with everyone else. The treatment processes, the pain and fatigue, the fuzzy thinking are all constant reminders that I am walking another path in the world, at least for now.


In many ways, it reminds me of traveling in a new country where everyone speaks a language I can't understand and is part of a culture with different rules and norms. Or perhaps it is that I am in the midst of a familiar culture, but I no longer can fit in with the rest of the people here. I have changed and I can't participate in the simple things that would allow me to fit in with everyone else. My focus for the summer is my disease and all the steps I must go through to prevent it from spreading and to heal from the treatments. I don't have time for summer picnics, happy hours, hikes and games.  I don't have the strength to explore new places and meet new people. I spend way too much of my free time recovering alone.


Most of my previous life has been packed away for now, set aside for another time. Much like the boxes we moved from our house in the Gorge, they are stacked and waiting for us to open them and bring the contents back into our new house.  When my strength returns, and there is time for things besides cancer, these parts of my life can be brought back from storage. I know they will be there waiting, but for now so many things have been set aside.


I have felt this isolation and aloneness before, but never for months at a time. The closest feeling was a day I spent exploring Tokyo alone. There were thousands of people all around me. I took the subway to Asakusa to shop and explore. The narrow streets were full of people, but I felt completely alone. I bought my souvenirs, had lunch in a small restaurant, and took lots of pictures. It was a good day and I was happy,  but as I was on the subway heading back to my hotel, I realized I had not spoken more than a few words all day. I did not understand anything that people around me had said either, all day long. As I sat there on the train, I felt invisible, like I did not even exist.


I wonder if I would be feeling this much isolation if I was still living in the Gorge. Would I feel so alone if I lived where more of our family and friends were? Joe and I had just been starting to settle into our new home on Bainbridge. We were enjoying exploring Seattle and things to do in the area. Then when cancer came into our lives, that also was put on hold. We know the hospital and our medical team, but have lost progress on building community in our new place.


Somehow, I think the aloneness would still be there, no matter where I live. When I first started writing about my journey, I said that I did not want to be defined by cancer. The reality for this summer, is that breast cancer is my life. While going through chemo, cancer really does define you. It dictates what you can do, what you eat, the many medicines you must take, how strong or weak you feel each day. It is almost all I think about, and all I can plan for each day.


I totally appreciate the many wonderful supporters, all our friends and family, who have been cheering me on and sending their messages of support. I can't tell you how much the cards, notes, and messages on caring bridge or in email mean to me and help me through this journey. The truth, though, is that this is a process and a journey I have to go through all alone. No one can take the load from my shoulders, even for a day. I carry the burden on my own, because it is in my body, until we get through this summer of breast cancer.

Rainy Day Recovery

The clouds came today and washed away the blue sky, leaving behind a cool gray morning. Distant thunder and lightning called forth the day with a low rumble. NW overcast dimmed the sun so I could look out from the tunnel of chemo and not hurt my eyes. Everything was clean and gray and quiet. Perfect for a slow day of recovery.

Bright summer skies are perfect for the living. The light and warmth bring everyone out into the sun and everywhere activities abound. Streets are filled with people; walking, selling, meeting, shopping, looking, doing. Life abounds in a summer city.

For me, recovering from chemo, summer days are both a reminder of all I'm missing and an overwhelming amount of activity. The pain, like a migraine, is amplified by the light, noise and motion.

Today's respite from the sun was a soothing calm. The rainy day was permission to stay indoors, quiet, bundled. A day to nest and heal and be peaceful. The coolness and darkness of the day felt like a retreat from the world. It was healing time.

Late in the afternoon, the sky cleared. Sunlight filtered through the clouds and left a golden cast on the tops of the trees. Butch, my dog, and I emerged from the shelter of the house to greet the end of a peaceful, restful day. A day of healing and calm that ended with me feeling stronger, rested, with more healing, and hope for a brighter day tomorrow.

The Top 10 Reasons to Celebrate Losing Your Hair

The journey through cancer is a strange one. There are times where I have no control over what this disease is doing to me and my body, and there are times and places where I can step in and chose how I want to go through this process. My hair began falling out last Saturday, while I was visiting my friend, Nancy Bloyer, who is facing stage four lung cancer. In some ways it was helpful to have it start there, where I had supportive and understanding people with me. On the other hand, I did not want my visit to be about my hair, so I did my best to not touch or brush it so I could minimize the 'fall out'.

I had a big meeting at work on Thursday, so part of me was hoping I could hang on to the hair until after that event.  I would be out Friday (today) chemo and then recovery for the following week, so it could have given me the chance to get used to the hairlessness and hat/scarf option before returning to work. No such luck! By Tuesday it was coming out in handfuls and I knew I needed to take charge. Rather than face the clumps and random falling out, I went to the same hair place where I had my hair cut short. With a few tears, and the support of Joe and Kelsey, I had them shave my head! Even though it was hard, it was very empowering to have it done.

The next day at work I wore a hat I had bought at the hospital cancer support center. There were lots of stares, a few folks who avoided eye contact, but mostly hugs and support from colleagues. At the Thursday meeting, where I was facilitating an hour of an all staff meeting (150ish people), I had a nice scarf on and decided to face the unspoken questions head on. After I introduced myself and the topic, which happened to be trust, I said:

 "In the spirit of trust and transparency, I want to share with you all why I have this scarf on today. I don't want it to distract you from the content of my talk, so I want you to know that I am being treated for breast cancer and I lost my hair this week. My next chemo is tomorrow and my prognosis looks good. Now lets focus on our topic today.."


It was well received and I felt good to get it out there. I was calm and confident, I know how to talk about my cancer now without too much emotion. Several people came up to me afterward and offered their support, a few sent emails describing how they appreciated my courage, and a couple shared their stories of their own breast cancer or a close loved one. It was another example of the power of "owning" my experience and choosing how I want to show up through the process. 


In that light, here are my top 10 to celebrate losing your hair:

1.  You save lots of money by not buying hair products 
2.  Both time and money saved from not going to the hair salon
3.  I get an extra 30 minutes of sleep, by not washing, drying and styling each morning
4.  No longer need to worry about the rainy Seattle days ruining my hairstyle
5.  Hats and scarves provide lots of new accessory options
6.  No need to worry about hat head, or bed head
7. Having no hair really highlights your earing collection
8. No need to shave during treatments (its not just your head where the hair falls out)
9. Did I mention, no hair - anywhere?
10. Lots of looks and stares - even though you are over 50!