Category: Navigating the new me

When we noticed a campsite available for Big Basin for one night this long weekend we decided to go camping. It was bit of an experiment for me – to see if I could sleep in a tent. Last time I tried was our weekend at Big Sur the first week in May. That weekend, I found that I could not sleep in a tent for two nights. I was exhausted by the time we got home. So, when we went camping in the Eastern Sierra’s, we rented a van so that I didn’t need to sleep in a tent. That worked well but isn’t a good option for a quick weekend get away.

The other reason for going up to Big Basin was to do a couple of longer hikes. In the last few weeks (since vacation), I’ve been doing more and more training for the Avon Walk – which is next weekend. It has snuck up on me! Thank-you everyone who has donated to help me be able to participate in the walk. Back in May, I had resigned myself to walking only 4 or 5 miles. Even that would be a stretch given my neuropathy. However, my Aunt (who is generously coming from Canada to walk with me) has encouraged me. She too has been training, and wants to make an attempt at the entire walk (23.8 miles/38.3 km on Saturday, 15.5 miles/24.9km on Sunday).

In order for me to walk more than 4-5 miles, I have stepped up my training. Last week I hiked 6.78 km at Alum Rock park and did a 10km walk along the Guadalupe trail.

I decided (crazy me) that I was ready to step up my game and go for a 10 mile hike! It felt a little contradictory to be signing into an ADA campsite (California State Parks have campsites that can only be used by people with ADA placards, that is, handicapped permits), and then asking the ranger for recommendations for a 10-mile hike. And more so, it being 2pm and us planning on going for 10-mile hike that day!  The park itself was a complete zoo. There were warnings on the way up that the day use area was full. The way the park is designed, when that area gets full it backs up the ‘highway’ that runs through the park, making it more difficult for anyone to get anywhere. We were lucky enough to find a place to park for long enough to register – then parked at our campsites and headed out for a hike from there.

For our first hike, we ended up turning around a little earlier than the recommended hike – in part because we parked at our campsite, which added 2km each way to our hike. In the end, we hiked just shy of 10 miles (15.3 km). In my lifetime I can only remember two other hikes that might have been longer (Robinson Ridge in Kitimat and Fishing Cove Trail in Nova Scotia) the Internet is telling me that both were shorter!

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Initially our thought for our second hike was that we would take it easy. My knee had been bothering me on the downhills, so we thought we could make it to the falls and then take a bit of a climb (400m/1300ft climb!) out of the falls and follow the fire road back – which in theory would be less steep. The falls turned out to be a bit further in than we had originally thought – we again found ourselves rationing our water (oops). But, we did it. 17.3 km and almost seven hours of hiking later, we were back at the campground headquarters. We were thankful that the camp store was still open, such that we could reward ourselves with an ice cream before hopping in the car for the 90-minute drive home.

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The trail was beautiful, often passing by groves of giant redwoods.

Me taking a selfie!

Scott didn’t mention that I had almond butter on my face until well after I took the picture!

Our destination was Berry Creek Falls, which we are happy to report actually had water going over it! (things are pretty dry around here)

After the water falls, we followed the Howard King Trail, which was pretty much straight up (300m climb over 4km).

Which brought us to this lovely scenic overlook were we could see the ocean in the distance.

Today we are both a little stiff. We are going to need to go for a short walk around the market to help loosen things up a bit! Overall, I’d say we had a great weekend. I’m feeling a lot more prepared for the Avon Walk next weekend, and looking forward to visiting with my Aunt when she arrives on Wednesday!

In any long journey, transitions matter. Back in August last year, I wrote about the importance of transitions – transitions help mark our waypoints along the journey, but they also give us something to celebrate. A sense that something is finished a new thing is beginning. A way to start things anew.

Shortly after writing the post Transition Matter, I signed up to do the San Francisco Avon Walk. I had planned on the Avon Walk as being a major transition in my cancer journey. It was to represent the completion of treatment and the journey into living beyond breast cancer. In many ways, a bridging ceremony.

Little did I know just how far down breast cancer treatment would bring me, and how long it would take for me to climb back out of it. The Avon Walk has helped give me a focal point for my exercise. It has helped to inspire me to walk further and longer than I otherwise would have. It is encouraging me to push myself. That is a good thing.

I no longer see the Avon Walk as a major transition. This is in part because I do not see myself mysteriously getting better just by walking through the arches at the end of the walk. I know that I still have a long way to go. But I am encouraged. Four weeks ago I thought I’d be lucky to walk 4-miles. I did a 6.2 mile training walk yesterday. There is hope yet that I’ll be able to walk a large portion of it – even if it isn’t the entire 39, it is quite significant. I’m come a long way and that is worth celebrating.

Today I also signed us up for the Peak Hike. The Peak Hike was the last big walk/hike I did before the Taxol chemo took away my ability to walk. It was monumental for me – hiking further than I had before – bald and fighting off the cognitive fog and physical neuropathy caused by the chemo. I’m a little bit amazed that I managed it.

This year is the 20th year of the Peak Hike. We are part of a team – Em the Gem – who have being doing the hike since it began. The team captain has become a friend and was one of my many walking buddies. The ‘honer family’ have helped me with rides to chemo and provided us with dinners after my surgery. We are honered to be part of the family 🙂 …

The Peak Hike will be an interesting transition for me. It will happened at almost the one year post chemo mark. This is the point where we start to figure out what neuropathy is permanent. It represents a reset in the expectations – at this point the expectation is that the neuropathy will go away – we’ll see. Looking at it now, I’ll be happy if I can make the 7 mile hike. It will be just as momentous this year as it was last, only this time I’ll have hair – so my struggles will not be so obvious to those around me.

The Breast Cancer Fund looks at research and works towards changing public policies and educating people about things that might lead to breast cancer. They are focused on prevention rather than treatment after the fact.

If you’d like to contribute to our fundraising for the Peak Hike, you can use these links – Thank-you!

• Becky’s Peak Hike
• Scott’s Peak Hike

As frustrating as it may be, the reality is that healing takes time … and lots of it … calendar time … it isn’t something that you can speed up no matter how much you will it to.

People will often ask me how my neuropathy is. At the moment, it is mostly just painful. I’m looking to that as encouragement – as in, the nerves are re-growing, so it hurts. At this point in time there is nothing they can or will do for it. I take some meds that in theory help to manage the pain. That is about it. Time must pass, and as it does things slowly heal.

Once a year has passed (end of October), then my neuropathy will be re-assessed. It is at that point (or maybe even 18 months) that we start talking about what is permanent versus the transient pain associated with recovery. As much as I might wish to will it to get better, the reality is, that the only thing that will make it better is time. No amount of physiotherapy, ultrasound, acupuncture, etc, will make the nerves grow back any faster – although those treatments may help temporarily manage the pain – the only thing that will fix the real problem is time. And so, I must learn to be patient and wait.

When I think about time and healing, I am reminded about just how far I’ve come. I think of my various walking buddies and how they must see the remarkable differences. Back in December, after my surgery (so Christmas), I could barely walk around the complex. I remember going on 5 or 10 minute walks within the interior courtyard with my mother-in-law. Not exactly our usual Christmas afternoon turkey in the oven walks.

Eventually I graduated to walks out to the pathway behind our house. Even then, I’d walk for 10-15 minutes – very slowly – and then need to sit on the bench. I knew where all the benches were – I created a walking route so that I could stop and sit at each bench as I needed to. So, I must say, that I have come a long way. Yesterday I walked 10km (6.2 miles for the metric challenged). It took me two hours. I didn’t stop to sit down even once.

My parents last saw me in person after my first surgery (American Thanksgiving). I wasn’t quite at my lowest at that point, but I was still in pretty rough shape. Chemo had taken a lot out of me and my neuropathy was pretty darn bad. I’m looking forward to seeing them in a couple of weeks – so that they can see just how far I’ve come.

As so, I remind myself regularly. Healing takes time. I’ve come a long way, but I also have a long way to go. As much as I want to be back to the super fit me that I was before cancer (or at least that is how I remember myself – the reality of that may also be a bit of a myth that I tell myself), I need to remember healing takes time. It isn’t something that can be rushed.

One thing about California – the closet sliding doors are often made of full length mirrors. This means that every day, after my shower, as I walk passed the closet to the bedroom, I see naked self in the mirror.

In many ways, this has helped me heal. It has helped me see myself – my scars – and accept them. My breast surgeon and plastic surgeon both did a remarkable job. Sure, my body isn’t perfect (no ones is), but I’m pretty happy with the outcome.

I do think looking in the mirror every day helps. It helps me accept my body. It is also a constant reminder – so are all the pills I take at 9am and 9pm each day. I am hoping that one day, I will internalize all this change – and it won’t be something that I think about – that the scars will not be a reminder, but rather will just be me. Someday. Just not yet … I’m not there yet. For now, I’ll choose to be happy with the body that I have, and try to accept what has happened and move forward.

I’ve noticed that lately I’m a lot more aware of these appendages on my chest, which have no feeling, and my surgeons continue to remind me “are not breasts” even though they look an awful lot like breasts, and when you touch them, they kinda feel like breasts. But alas, they are not breasts, in that they do not have any of the fatty breast tissue in them. That was all taken away when I had a double-mastectomy to remove the last bits of cancer in my system – December 17, 2014. Although I don’t remember much of that day (I was wheeled into the operating room at 8am), I shall never forget it.

Lately, I seem to be much more aware of the numbness in my fake breasts. I’m particularly aware of the area where my new breasts brush up against my upper arms. My upper arms can feel that something is there, but the breasts don’t feel the upper arms. So it all just feels kinda wrong. I actually caught myself bumping into a cupboard in the kitchen today – the cupboard door made contact with my breast, so I didn’t feel it.

I’m also numb in a large portion of the front of my stomach – where the donor tissue was taken. I have a scar that goes from one hip bone to the other. I can feel the outside 2 or 3 inches of the scar – the part that is actually over my hipbone, but I cannot feel the middle of my belly. In some ways, I’m feeling like I’m loose more feeling rather than gaining it. That more of me is numb now than it used to be. I’m also starting to feel some pain along the incision in my belly. I’m particularly aware of it on the part of my stomach between my new belly button (which is pretty cute BTW) and my stomach incision. The pain comes and goes – and it is not bad pain – in that I don’t need to take any meds to block it – it is an awareness pain. I find that rubbing my belly helps – perhaps it is a way to help the brain make the connection between the new nerves and the physical location of the sensation. I don’t know, I just know that when I get that feeling along my belly, it is eased by rubbing.

I’ve also had a couple of times where I’ve had an itch on my not-breasts. This is really difficult to manage. The itch feels like it is coming from the skin on the breasts, but I don’t have any sensation there – which means that scratching it does nothing. It is horribly frustrating – it is an itch that cannot be scratched.

One of the times when I am most aware of the numbness is when I go for a swim. I find myself hesitating going out to the pool – in part because it just feels really weird. I am thankful for my reconstruction surgery – such that I can wear the same swimsuit I wore before my mastectomy, and I don’t need to worry about prosthetics. I’m afraid that prosthetics would have been one too many sources of inertia that I’d never actually get to the pool. As it is, I can spend a good hour between the time I decide I’m going for a swim and the time I actually get my swimsuit on and walk out to the pool (thankful that I don’t actually have to go any further to swim or I’d never actually get there).

So tonight, with my ankles unhappy with me, I was happy to hop in the pool (rather than biking or walking). It was weird walking in. There were kids playing in the pool, so I tried to walk in (one hand on the railing so as not to lose my balance) without making funny faces as various parts of my body first get exposed to the cool water (the pool was pretty warm tonight, which made it easier). I recall from before, that stepping into the pool involved a shock at the belly line and again at the booby line – that is, when the water first approaches the belly and the breasts respectively. I no longer get that shock – the impact of the cool water on my belly and breasts just isn’t there. If the water is cold, I will eventually feel the coolness in my bones/flesh – but I don’t have that direct cold sensation on my belly or breast skin.

One thing that being in the pool does, is it helps me figure out what I’m feeling and what I’m not feeling. I recall when I first started to get neuropathy, that I found swimming to be an odd sensation. Climbing into the pool highlighted that I couldn’t feel the water on my skin. I could feel the coolness of the water, but I couldn’t feel the actual water. Similar to how rubbing my belly when it hurts helps my brain figure out where those new nerves physically are – hopping in the pool helps me appreciate the boundaries of my numbness.