Category: Emotional Journey

I want to start by saying thank-you to all those who contributed to mine and my Aunt’s Avon Walk. We have both made our fundraising minimums, and are happily no longer soliciting funds. We are working now towards preparing to walk – which means I need to get out more and walk more.

During last week’s conference, I recorded “live on the Internet” a series of Google Hangouts with a bunch of incredible people from the conference. This means that I often saw my face on the screen. Here are some samples (you may want to watch only the first few seconds):

Tuesday:

Wednesday:

Thursday:

Notice that my hair was different in each of the clips. It is posing a never ending challenge to me. As I mentioned in an earlier post, those who know I went through chemo and saw me bald think my new hair is spectacular. Others, well … I’m mostly always having a bad hair day. I didn’t cover my hair on the airport on Saturday (I did on Tuesday) – which meant that I wasn’t treated quite as nicely by the gate agents.

Anyways, more to the point of this post. I found that I was looking at myself on the phone/camera, not liking what I saw, but also not caring. This is a really important transition in my body image (and one that several other women at the recovery support group related to). It isn’t that I don’t want to look fabulous (who doesn’t), it is more that how I look on a particular day isn’t that important to me anymore. Sure, I’ll do what I can to look better, but I don’t carry the worry over it like I used to. Although I appear to talk about my hair a lot, that is in part because I have some! I cannot believe I was so bald for so long.

At the conference, I had a few conversations about my breast cancer experience (none of them on air/recorded as they were much too personal to be sharing live) – one of which has been blogged about by Jill Leafstedt in her Reflections on ET4OL post. In each case, I found the conversations to be powerful and provided a way for me to connect more deeply with people. My openness helped to allow space for others to share some intimate details of their lives. It helped me make new friends – to deepened connections.

I also am reflecting on how I totally over did it on Thursday – having drunk too much and stayed out too late – but had so much fun at karaoke, that I would not change a thing. Last time I over did it, was when I biked up Mount Hamilton the Saturday before my last surgery. I ended up with a fever the next day. I am happy to report that I managed to successfully bounce back from my indulgence. It is a sign that I am recovering. I’m getting stronger every day. It is a slow process, but I’m working hard at it. Most importantly, I’m encouraged that having fun didn’t hurt me!

On Thursday night, after the women in ed tech dinner, I joined a bunch of the folks from the conference for some karaoke. I don’t really remember the last time I did karaoke, but each time it reminds me of one particular night screaming Bon Jovi’s “It’s my life” at the top of my lungs from the crew lounge of a container ship in the middle of the Atlantic Ocean. This time it wasn’t so much about singing Bon Jovi or Bryan Adams’ “Summer of 69”, although I somehow ended up with the mic in my hand for both those songs!

Throughout the evening of karaoke, there were many reasons to laugh. Someone commented to me the next morning that they received an abdominal workout from how hard they laughed. I found myself nodding and thinking – if only you knew.

I returned to my hotel room at about midnight. I smiled and then I cried. Through my tears, I posted this simple tweet:

I realized that I had not laughed so hard since before my cancer diagnosis. I had not been that happy in over a year. At karaoke, I laughed so hard I think I may have loosened some of the interior stitches that are holding my abdomen together. I say this only slightly jestingly – my abs are weak and I cannot tell if the pains I feel are just nerves regrowing or if they are overworked muscles. That night I stayed up so much later than was sensible given my morning schedule, I drank more wine than I should have, but I also laughed and laughed and laughed. Oh how I so needed that.

Over the weekend I attended the Casting for Recovery retreat for breast cancer survivors. I initially mentioned the retreat and my ethical dilemma associated with it in this post:  Casting for Recovery.

The retreat was held at a fishing lodge in Northern California (Indian Creek Lodge). We had the entire lodge booked for us. There were 14 participants and about 10 staff all staying at the lodge. Casting for Recovery is funded by the generous donations from many different local fly fishing clubs, as well as local fly fishing stores, and a few other major sponsors. In addition, a bunch of anglers volunteer to be river guides, such that when we fished on Sunday morning each participant had a personal river guide. It was a privilege to have the opportunity to learn a lot about fly fishing, but also to spend a weekend in the company of many incredible women. Most of the staff were also program alumni and fellow survivors, which made it that much more meaningful. The staff went out of their way to make sure my needs were met (my special diet but also issues with my neuropathy). I was touched by how considerate and compassionate everyone was.

All day Saturday was spent learning about fly fishing and attending a couple of support group type meetings (one on physical aspects of breast cancer, another on emotional aspects). The support group type meetings really highlighted how lucky I am to be where I am. I have access to several different support groups, such that I can choose which groups work best for me. Many of the women didn’t have access to support groups, or the groups that they did have access to did not work well for them.

Sunday morning we got all decked out in our gear and went fly fishing. Each participant was paired with a volunteer river guide – so we each had our own personal guide to teach us more about fly fishing, to tie on our hooks (flies), and coach us on where and how to cast. One of the ladies even caught a fish!

During the presentation on “what fish eat” the fishing instructor talked about the spiritual connection with the fish. She emphasized the importance of taking a moment to breath in and take in your surroundings. A big part of fly fishing is just the experience of being in the river – feeling the water flowing around you – being part of the environment around you. One important thing that fly fishing does is help to monitor and support the health of river systems. In order for there to be fish to catch, the river needs to be healthy. So the fly fishing clubs help to promote and preserve the wild spaces needed for fly fishing. For the most part, fly fishing is a catch-and-release type of fishing.

I was struck by how much more technical it was than the hook-and-bate fishing that I did growing up. When you are fishing to eat, the goal is more about catching fish. The gear is pretty simple – you don’t even need a fishing rod – all you really need is some line, a hook, and some bait (worms work nicely). It occurs to me now, that the last time I was fishing was off the back of a container ship! With fly fishing, it is more about using a variety of different techniques to catch fish. The gear is much more complex – with specialized line, leaders, and lures (known as flies). If you are just trying to catch fish, it is inefficient. However, if you want to experience the magic of being part of the river – that is much more what fly fishing is about.

My Saturday morning selfie:

Learning how to cast:

All decked out in my fly fishing gear ready to fish (it was pretty cold that morning):

Learning about which bugs are currently in the water (so we can chose the right fly):

River selfie (while my guide, Cheryl, was tying on a new fly):

The entire time I was fishing, I was aware of a Canada Goose that was nesting on the little island right across from our fishing hole. The picture, unfortunately, makes it look so much further away than it was. We waded out to about 20 feet from the island.

Although I enjoyed the opportunity to try fly fishing, and I love the magic feeling that comes with casting, I do not see myself taking up the sport. I’d so much rather fish in places that allow me to eat the fish. I cannot see myself making the investment in all the gear that is needed – although, if someone were to offer me a free weekend of guided fly fishing, I certainly would not turn it down 🙂

After the weekend, I’m left feeling the need for a longer retreat. I need more time to process the events of this last year. I need time to clear my head, and decide where I want to put my energies. One of the things I learned about at the retreat is an organization called Commonweal – They do a week long retreat for cancer survivors and their partners – a Cancer Wellness Program. It is a weekend full of healing, yoga, and support groups, all set at a retreat center on the coast, just north of San Francisco. A couple of the women (participants) at Casting for Recovery had attended Commonweal retreats and highly recommended them. I really like that the retreats include your partners/caregivers. I am much more willing to spend a week away at a retreat center when I know that I can share that experience with my hubby – who needs it just as much (if not more) than I do. I will call them tomorrow and see when we can get in!

 

My cold still lingers on, although in some ways I’m feeling better. I get tired really easily – and yet I try to get out for at least a short walk each day. The walk gets me away from my computer, and gives my body a chance to stretch out and enjoy the moments of sunshine between the clouds. The weather isn’t as warm as it has been, but still rather nice. If I were feeling better I would consider getting back in the swimming pool. That is something that will have to wait until after this cold goes away. The good news in that, is that my incisions shall be well healed by the time I jump in the pool.

Every day, either before or after my shower (or both), I look at myself in the mirror. I know many women who are not able to do that. I’m really happy with how my body looks. I see fat on my legs that I’m sure will become more trim when I can finally get back on the bike and ride – again, this cold is sidelining me. Aerobic activity is out of the question until the cough goes away. One day, I’ll find a way to share a photo on this blog. A photo of my scars but also of my new breasts – so that others can see what the type of reconstruction I had actually looks like.

I am finding that I am remarkably more mobile. I was almost able to do a sun salutation (yoga) last night. I got as far as the plank part, where my core said ‘no chance’. I cannot support my body with my stomach/core just yet. Again, once this cold goes away, I hope to get back to the Y and the Living Strong Living Well program. They have allowed me to enroll in a second session because I could not complete the first. I’m grateful for that opportunity, as I am finding the targeted strength training to be very helpful. I was seeing some great results before my last surgery.

As my cold lingers on, I am struggling with some emotional / intellectual demons. I find myself going down the path of think I’m never going to feel better, I’m never going to be strong again. The Cognitive Behavioural Therapy is helping me see that I’m telling myself these things. It is helping me figure out how to stop telling myself these things – to re-program how my thinking works when I’m not feeling 100%. I don’t have the answer just yet, but I’m working on it. I’m also giving myself permission to rest … but at some point, and the things on my to do list pile up even higher.

I’ve never been one to procrastinate in the past, but I’m struggling with it now. I need to start getting back to work, but I struggle with the motivation to get it done. I use the cold as an excuse to not try.  I use chemo brain as an excuse to not try. I tell myself, maybe tomorrow, or maybe next week. It will all be better sometime in the future – but the reality is that I need to stop procrastinating and start trying again. I won’t really know what I’m capable of – or what I’m not capable of – until I try it, but part of me is afraid that if I try I will discover that I cannot do what I used to be able to do. That I will have cognitive deficits. That’s what is really scaring me. And not trying, procrastinating, means I won’t have to find out that I cannot do what I used to be able to do.

Time is also needed to heal these wounds. I may be finished with treatment and surgery, but I have not healed from those assaults. The neuropathy in my feet is still a significant problem – but I’m feeling changes – I can feel blood flood to my feet (I can feel the swish of my heartbeats). This is a new sensation (very odd). I’ve told that we will not know the extent of my recovery (or damage) for at least another 6-months. Neuropathy can take 18-months post surgery to heal. The cognitive deficits associated with chemotherapy are even less well understood. I’ve learned from various social networks that people start to really get back to their ‘normal’ after about a year. So, right now, I can expect that I will struggle with some things – but that I can hope that as time goes by it will get better. I will regain most of what I had before treatment. It just takes time.

So, this afternoon, I will try to get some contract work done. I will try to do some of the more technical stuff I used to do with ease. I know that once I get started, I will enjoy doing it, but getting over the initial inertia is hard. I need a push (or maybe another cup of coffee!).