Category: recovery

Not growing old

If you were here you would notice that I’m constantly doing something. Even when my body is hurting, I find something to do. Until I enter a drug induced sleep at night, my mind and my body are doing something.

I feel like I always need to be doing something.

It occurred to me today, that this need to be doing something is because I feel like I need to be living, and when I stop to rest or take a two hour nap in the afternoon, I’m not living.

I also have the sense that I’m not going to grow old.

I remember telling a friend, and this was before my latest bout with cancer, that I likely would not live as long as my puppy (this was when Cali was still new to us). My friend was somewhat shocked with that statement, but it is something that I have felt for a while.

When I think about it, I’m not really sad about it. It just feels like something that is. It does make me sad sometimes when people are celebrating their later years. It would be nice to have lived that long, to have that much life. I’m also sad at the thought that my husband will need to grow old without me.

Neither of my parents lived into their 70s.

The sense that I will not grow old, re-enforces the sense of needing to live every moment I can.

I can say that so far I have had a quality life. I’ve had so many great experiences. I am hoping to have more great experiences in the time I have left. I don’t really have any ‘bucket list’ items.

I need to slow down a little. I need to let my body finish healing.

I’m frustrated at the pace of my body healing. Last time, I had a huge surgery and a long way to recover, and yet it felt like it went quickly. I felt like every day I was getting better. With how I’m feeling now, I have no sense of healing. I have no idea if what I’m feeling is a result of radiation or lingering chemo side effects (e.g., every three weeks my heals get really dry and sore – this was a side effect of one the chemos I was on).

Mostly I’m feeling strong and like I’m doing well – but then I get hit with fatigue or tired and a need to nap. It seems that the way I heal from radiation is napping.

One of the challenges I’m have is endurance. I get tired quickly and I start sweating quickly. I’m going through multiple changes of clothes every day. Since I need to feel like I’m doing something, I do things like painting the walls in my husband’s office, and the work causes me to sweat. It shouldn’t. It isn’t really that physically demanding, and yet I start to sweat.

I need to slow down a little. I need to let my body finish healing.

I need to give myself permission to not “live” every moment – and let myself take moments off to just rest. It is OK to not be busy doing things all the time. I can write that, but I don’t really feel it. Inside I still feel the need to do something – tonight’s something is putting together an Ikea buffet. I’m tired but I need to finish it or at least unpack a few more boxes – this cabinet came with so many different boxes!

This rambling blog post has three key things I want to communicate:

(1) I’m getting tired quickly/easily

(2) I need to be doing something all the time

(3) I’m not going to grow old.

I need to slow down a little. I need to let my body finish healing.

Wed April 3, 2024
SendIt! Photos from my surf weekend – @senditbrand

The weekend before memorial day (Victoria Day long weekend in Canada), I went to a cancer camp to learn to surf, hosted by the Send It Foundation. I have always wanted to learn to surf, so this was a bit of a dream come true for me. The surf was freezing, but the opportunity to try was a lot of fun. I realized at the trip that I need to be in much better shape to actually surf. I need to be able to jump up into a squat position from laying down. It was a struggle, but also a motivation. It has helped to motivate me to try harder at getting my body back into physical shape. Although I had no hope of getting up on my feet, I did manage to get up onto my knees a couple of times.

Scott pointed out that I had two heads. The head behind me was my surf instructor. Note that she is wearing a full head wetsuit, cause the water was COLD. I clearly was rather focused.

After a morning playing on the surf, we went out standup paddle boarding. I had done it once before in Niagara-at-the-Lake (where the water was really warm). Here, I’m wearing a wetsuit so I don’t freeze if (when) I fall in.

I did well going down the lagoon, but then couldn’t get back. I was fighting both the wind and the current. I ended up on my stomach being pulled back by the rescue kayak. I then traded in my standup paddle board for a position as a rescuer.

This was my first time kayaking since surgery. I had no idea if I’d be able to do it all, so I was glad to be able to try it out. I actually did pretty good, but my body (especially my upper body) was tired from the morning of surfing and the standup paddle boarding.

We did a second day of surfing, and some exploration of the town of Stinson Beach, the next day – however, the professional photographer wasn’t there, so I didn’t get any nice photos.

In the end, I did manage to try out all the things I had wanted to – and it opens more doors for me. I know now that I can kayak, although I don’t think I’d be comfortable in a single kayak just yet (unless there was no wind). Back in 1999, my hubby and I spent a few days kayaking in Southern Haidi Gwaii, and have done several other sea kayak camping trips, so I was not unfamiliar with kayaking (and how to paddle correctly), mostly I didn’t know if I could do that with my post-surgery body.

I am very glad that Send It let me join them. I’m a little older than their normal crowd. There is a challenge with being diagnosed with cancer in your 40s. I’m considered a ‘Young Survivor’ from a breast cancer perspective, but a lot of the charities that provide adventures to cancer survivors use 40 as their age cut off – so they aren’t open to me – unless they make exceptions. In this case, Send It made an exception, and I am grateful for it.

Wed June 7, 2017
The freezing surf

This weekend I had the opportunity to learn a little about surfing. I first learned about the Send It Foundation from the Bay Area Young Survivors (BAYS) resource website. Sent It provides opportunities for young cancer survivors to get out in nature and do something – this weekend that something is surfing, stand up paddle boarding, and kayaking.

I was worried a bit because I’m a little older that most of their regular campers. Actually, this weekend I was the oldest one there. But I could not turn down the opportunity to learn how to surf. I have always wanted to try it.

The weather was beautiful but man that water was cold! Even the surf instructors said that the water was exceptionally cold. It has been windy the say before, so it stirred up the water from deeper in the ocean, dropping it by a few degrees. Someone said it was 50 Deg F (10 deg C). All I know is that it felt like ice on my hands. Luckily, our lead surf instructor decided that in addition to wetsuits, we should also have booties. They made a huge difference. I tried going out on Sunday without booties and could get in very far. My feet felt a “brain freeze” type sensation. Did I mention, the water was COLD.

Overall, I had a hoot. In addition to learning a little about surfing, and riding a few waves on my stomach (I don’t have the mobility to stand on a surf board – at least not yet), I also got a chance for a little standup paddle boarding and kayaking. I really wanted to try out kayaking as it is something we used to do all the time. It was nice to validate that I could do it – although on Sunday my pecks were screaming at me.

On Sunday morning my body was starting to hurt (in a good way). By the afternoon, I was finding every opportunity I could to stretch out my shoulders.

I had a lot of fun this weekend – Thank you Send It Foundation, and especially Katie and Caroline, for giving me the opportunity to learn what it means to Send It!

Wed May 17, 2017
Yosemite and snarky comments on Facebook

As I write this, I’m thinking about our last vacation. I really noticed over Christmas that my posts were missing something. I kept thinking about the snarky comments my father used to leave on my Facebook posts. I find myself checking for the comments that don’t come. I miss you dad.

Tunnel View

Last weekend we went up to Yosemite to experience some winter. Last January at Epic Experience I tried out cross country skiing for the first time since cancer treatment. I had no idea if I could do it. I was impressed that I managed 7km and could have skied longer but we were running out of time. So, I was encouraged to think that I could cross country ski at Yosemite, this time with my husband and no limits on our time.

Badger Pass Cross Country ski area

Becky taking a picture of Scott taking a picture

It was warm out, and we forgot the wax at our condo, which meant we opted for a no wax skies. This turned out to be a really good choice as the conditions were typical spring skiing conditions – which means the snow in the shade is much colder than the snow in the sun, and this variability makes it really difficult to find the right wax for wax skies.

Not exactly well marked or used trails.

At one point during the ski we decided to explore some of the trails in the woods, rather than the groomed roadway. we expected the trails to be a little more defined and a little better marked. At several points we got lost, and had to backtrack to find the trail. Eventually we turned back the way we came, and tried another route.

Becky navigating a small hill on an unmarked trail (another word for being lost)

It was a lot of fun but turned into a much longer ski that planned. In the end we skied 16 km (10 miles). I was exhausted and very much pushed myself to the ends of my energy. But I did it. I was a lot stronger than I’ve been in a long time. I skied further than I would have the first time out before cancer. My regular 2-3 hour hikes and hour long swims are making a difference.

Upper and lower Yosemite Falls

On the second day it was overcast. It has rained in the night. Rather than skiing, we opted for a hike. Again, we ended up on a path that was more challenging than I expected. Because we were hiking in snow, we were wearing winter boots – which turned out to be useful when negotiating various puddles and small streams of snow melt that crossed the path. At one point we came to an area where the path was completely flooded out. The route around the path involved climbing up a large rock (about 12 feet tall) and then down the other side. The hiking was technical but I managed it quite well. I certainly pushed myself. We hiked 9km around Mirror Lake. It was a beautiful hike, made very pretty by the snow.

Mirror Lake

Where’s Becky?

Mirror Lake from the other side

Feature image and all photos taken by my husband (c) Scott Drennan

Thu February 9, 2017
Emotional memory

I’m finding it a little weird that lately I’ve been having memories – almost flashbacks but not as vivid – of the time around my diagnosis. We aren’t at an anniversary of it … that is still 5 months away. It is why I’m finding it all rather strange. And the memories aren’t terribly vivid from a visual perspective, but they are much more from an emotional perspective – except that I feel like I’m looking in on myself.

I also have a sense that the last few years didn’t happen. This is a sense that happens rather frequently. Maybe it is a part of moving on with my life, and the stepping back into some things? Even as I write this I’m remembering the sense of denial I had … and I’m glad that I don’t remember the feelings of intense sadness … not that I don’t remember that they happened, more that I don’t remember exactly how they felt. I don’t have the emotional memory of those feelings, where I’m having the emotional memory of specific times.

Now, my research does involve me going back over my blog posts – but for the most part I haven’t done that yet – and really it doesn’t seem to at all be related to that.

When it first started happening I dismissed it. Now I’m finding that I’m noticing it happening – a perhaps a little more frequently then I’d like.

Feature image by Joe Shlabotnik via Flickr CC By 2.0.

Wed January 11, 2017
Yesterday I climbed a mountain

Don’t look down, I keep telling myself as I step across the rock strewn path. I look down and see a clear path, 500 feet (ok maybe only 200 but it might as well have been 500 for how I felt), down a rock strew wash and think it would make for a nice waterfall when it rains.

I look at where I am and where I need to go. I try to guess where the best path will be. How do I get across this patch of loose rocks? I see a mesquite bush along the wash and decide to go above it, telling myself that if I slip it will catch me before I tumble down the rocky slope.

I take a tentative step, and few small rocks slide from under my foot, but my foot feels like it is in a solid spot. I reach up to a large rock to see if it is stable, and start a small avalanche of rocks. It is very misleading, as the large rocks seem to be loose and not anchored, where the small rocks seem to provide better footing. I need to stay aware of this, as instinctively I want to grab onto the large rocks to find a solid handhold. I see another, larger rounded rock the size of a beach ball, and test it out for stability. Unlike the sharp layered rocks that make up the mountain and crumble when you grab them, the rounded rock has clearly been here for a while – with the weather having created its smooth edges. The rock is solid, so I grab onto it with my hands, and tentatively make my next step across the wash, using my arms to reduce the weight I place on my feet, at least until I know that my feet are on solid footing. Slowly, one step at a time, I make my way across the wash and closer to the path down the mountain.

Yesterday I climbed a mountain. OK, maybe it was more like a hill than a mountain, but figuratively it was definitely a mountain – it was steep and rocky and required a fair bit of technical hiking. Climbing up wasn’t so much a problem, although even at 3700 feet I find that the altitude does affect how quickly I run out of breath. I reflect on how it is always easier to climb up a steep path than it is to climb down one.

In reflecting back on 2016, I felt that at this time last year I was in better shape than I am today. In January, I went to Epic Experience. I cross country skied for the first time since cancer/chemotherapy. I was feeling strong. And then I injured myself and ended up in a day-cast and crutches for 8-weeks. It seemed that 2016 was mostly a downhill progression in my fitness level. I don’t feel nearly as strong as I remember feeling at this time last year.

But, as my husband highlighted to me, yesterday I climbed a mountain. That would not have been possible last year. Not that I wasn’t strong enough last year, but that my neuropathy was still really bad. I couldn’t manage a technical hike because after 20 minutes I could no longer feel my feet. I needed hiking poles in order to add a balance point and better know where my feet were. I also had mild lymphedema in my left arm, so I needed to wear a compression garment and had to limit the amount of strain my arms could take.

This vacation I actually climbed two mountains. The first was much less extreme and yet still a major accomplishment for me. It was more a climb to one of the lower peaks of the hills just west of Quartzsite Arizona. Yesterday’s hike was to a lower summit of one of the rocky hills that surround our campsite. My husband continued along to the upper peak while I took rest break and mentally prepared for the trip back down. (Yes that’s me in the photo sitting waiting for my husband).

The Sawtooth Canyon campsite (California not Arizona) is popular among rock climbers, and we passed a group who where learning how to climb and then rappel. The boulders they were climbing were around more than 50 tall. It was impressive to watch, but also reminded us that when we were looking for a path down the mountain, we had to be aware that there are cliffs. Any give path can lead to a cliff rather than a nice transition down the mountain.

It wasn’t Everest or anything that spectacular, but it did give me the courage to do more technical hikes. That sounds like a great way to start 2017!

Thu December 29, 2016
Neuropathy update

It has occurred to me that it has been a long time since I’ve talked about my chemotherapy induced peripheral neuropathy. At about this time last year I saw a pain doctor. Just in passing he mentioned the option of a 24-hour time released gabapentin (known as Horizant). It often isn’t mentioned because it isn’t on most insurance formularies (meaning it costs patients more). One big reason to chose it is that it reduces pill fatigue. One point that insurance companies and doctors seem to miss that is that it works a lot better. It is unfortunate that the efficacy of a medication isn’t taken into account because of insurance companies, and it really annoys me that insurance companies don’t take into account the efficacy of the medication. It is one of the things that angers me the most about this healthcare system.

One of the biggest advantages to a time-released version of the medication is that it is always in your system. With the other gabapentin, I’d need to take 4-pills every 6-hours for it to be equivalent. That means waking up in the middle of the night. On gabapentin, my neuropathy was always worse first thing in the morning. That was, in part, because after 8-hours of sleep I no longer had gabapentin in my system. Gabapentin also makes some people drowsy. So taking it 4-times per day can be really disruptive. The horizant makes me drowsy, so I take it at dinner and it helps me sleep at night (a double win because hormone therapy mucks with sleep patterns).

For me, Horizant has been a miracle drug. I’m willing and able to pay the extra for it (it isn’t cheap). It means that when I wake up first thing in the morning, my feet don’t hurt. It also means that my feet don’t hurt when I get up after sitting. It used to be that the first 10 steps were filled with burning pain in my feet.

I’m noticing that my neuropathy is improving. I still go through phases where things burn, but then they are much less intense. I notice that I have much more feeling in my lower legs and feet. This makes getting IVs in the legs a lot more painful, but that is a worthwhile trade-off for improved neuropathy. It used to be that I would lose feeling in my feet after 20 minutes of hiking. Now I don’t even notice my neuropathy until around the 90-minute mark. And even then, what I’m noticing is not nearly as bad as it used to be. So, I’m happy to report that my neuropathy is improving.

In January, I’ll talk to the pain doctors again. Anytime I mention going off of the Horizant, it is suggested that I stay on it. It is also used for other medical conditions that I have, like back pain from arthritis, reducing the side-effects of hormone therapy (e.g. making hot flashes less severe, treating restless leg syndrome), and treating post-surgery fantom pains. My healthcare team feels it is doing more for me than just treating my neuropathy.

And so, as this year is coming to a close, I’m happy to report that my neuropathy is doing much better. I’m finally starting to feel like I’m getting at least some of my health back. I’m hiking further than I ever used to – with a 10km (6-mile) hike not being out of the ordinary.

Sun December 18, 2016
Survivorship plans

There is a theory that at some point after active treatment you have an appointment to review a survivorship plan. That is, what do you need to know and do once active treatment is over? How do you manage your health issues post treatment?

I went to that appointment, but didn’t get much out of it. In part, I pushed for the appointment too early. I think now, at two years, I’m finally ready to start thinking about survivorship. I am not so much in “active recovery”, as I am in trying to figure out how to be a healthy person again.

One of the challenges I’m navigating now is that I get healthcare from two different organizations (Stanford and PAMF). My medical records are consolidated through Care Everywhere – this means that my medications lists are cross posted and any blood tests and such also get cross posted, but detailed notes of procedures are more challenging. I often need to tell the doctors about my recent medical history.

I’m struggling with when I should be seeing primary care and when I should be seeing specialists. I have a bunch of specialists – both at Stanford and at PAMF. Some of them were temporary specialists, in that I only saw them once or twice and there is no plan for continuing care from them; however, they may have prescribed something, so I am coming up with needing renewals of prescriptions and have no clue which doctor I should be talking to. Fortunately, many of things my primary care doc is happy to take over management. So, I’m starting to consolidate, and I’m starting to reduce the number of specialists I’m seeing. I am also choosing to trust that my primary care doc will send me to the specialists when things are out of scope for her.

Through all of this, I’ve learned to pass on the specialists I don’t like, and keep the ones I do. I’m still scared that I’ll miss something – that this symptom or that will mean more than it does – but I’m trying to find that trust in my body again. I’m trying to figure out how I can be ‘healthy’ again.

I also want to highlight that because of my surgical choice, and the fact that I don’t have hereditary cancer, my follow up appointments with oncology don’t generally involve additional scans. If I don’t have symptoms, then I don’t have scans. All of the scans I’ve had post-treatment have been brought on by symptoms, and all have come out negative for cancer – but they took a toll on me mentally. Each time, I had to deal with fear. I’m getting better at not completely overreacting, but I’m still finding myself overly stressed until I can get the scan over with. I look back and think that I put myself through horrible scans (the latest being a colonoscopy), and they turned up negative. I am really just sick of scans and tests. I need to step back and work towards a reduction of medical appointments. I remember pledging to try to schedule embargos on doctors appointments, and yet I have failed to follow through with that. I do manage to avoid appointments over my two week holidays, but I haven’t managed to successfully book an appointment embargo for a time when I am in town. I need to get them back into my calendar, and I need to learn to stick to it!

Feature image CC0 via Pixabay

Tue November 29, 2016
Memories of clear nodes

It was two years ago today that I got the very good news that the initial pathology returned that my lymph nodes showed no signs of cancer. It was a few days later when the final pathology report came in that it was confirmed that my lymph nodes did not show any signs of having had cancer – so no dead cancer cells. Since I did chemotherapy first, if the cancer had spread to my nodes, the chemo may have cleared it out. We will never know 100% for certain what the pre-chemotherapy results might have been. It doesn’t really matter.

Scott told me that I asked him over-and-over again about the status of my nodes as I woke up from anesthesia. It was the biggest unknown in my treatment. I had known that I had tumors. Scanning gave us a pretty good sense of how big they were. Although scans didn’t show us any signs of lymph node involvement, I wouldn’t know for certain until they removed the sentinel nodes (the first couple/few) and tested them for cancer.

The sentenal node dissection was only a small part of the surgery that I underwent on November 19, 2014. I also had three lumpectomies (which were not really that successful – in that one didn’t have clean margins and one missed the tumor altogether). I knew that my surgeons were not really concerned about the success of the lumpectomies. They knew that they would be going back a month later to do a full bilateral mastectomy. The primary reason for this surgery was a devascularization of the nipple and areola. This was the first stage in the nipple sparing mastectomy. In addition to doing a biopsy of the lump nodes, they also took tissue for a biopsy of the skin under my nipples. If that showed to have cancer, then they would remove the nipples during the mastectomy. Fortunately, the nipple biospies were also negative for cancer.

This was the first of three surgeries.

It is hard to believe that was two years ago.

Feature image CC-Share Alike 4.0 by Cancer Research UK / Wikimedia Commons

Sat November 19, 2016
Confirmation of incidental findings and foot surgery

A quick update on my incidental findings post the other day. The contrast MRI showed that the areas are indeed cysts and it is likely that they have been there all my life. They have nothing to do with the symptoms. Mostly I’m told that I need to exercise (which I do) and treat the symptoms (back pain). The good news is that it is not cancer, but also it is not something that needs me to see a neurosurgeon. The next treatment, if I feel the need for something more is an epidural steroid injection. This cannot be done until my foot heals – so no decisions for me to make until after I’m back on my feet again.

The sense of relief hasn’t waved over me yet. I was worried. I was worried about it being cancer, but I was also worried about it not being cancer. I was seeing outcomes that looked like a lifetime of pain. It didn’t sound good either way. So I’m relieved that it is neither at this point. I just wish these scares would stop. I really could use a period of time where I had no new worrisome symptoms.

Last Tuesday I had a minor toe surgery. I had put it off a couple of times. My podiatrist’s medical assistant had scared me a bit about the recovery. The doctor was a lot more causal about it. I didn’t like the inconsistency. But, alas, the pain in my foot got so bad that I had to do something. I could not put it off any longer. So, it turns out that I didn’t have as much damage to the cartilage in my toe as we feared. I did have something solid floating in the joint, which was unexpected and didn’t show on scans. This is likely what was causing most of the pain and swelling. So, it was been removed. The good news about that is that it is something that is likely not going to return. It means the surgery may actually fix the toe for the foreseeable future (rather than 7-10 years). After 20 years of pain in that toe, I have some hope that it will finally be relieved.

For the next week I’ll mostly be sitting on the couch or in front of my computer. Elevating the foot, teaching, or working on my dissertation. Exercise is on hold until the foot is better. Stitches come out in two weeks and we start with getting the joint moving again. I’m hoping to be hiking again within a month. Things are looking good again. And now, I feel the need for a nap. The stress of the last month is catching up to me. The back pain, the toe surgery, and my father’s passing has been a lot all at once. I could sleep for a week.

Feature Image by krozak@ CC 2.0 license.

Thu September 29, 2016