Category: Emotional Journey

Treatment fatigue

Thu July 14, 2016

Treatment fatigue – it is the only way I can explain how I’m feeling. You would think that someone who has gone through cancer treatment would want to do everything they can to help reduce the likelihood of the cancer returning. I would have thought that was how I would feel. It is funny how when something like cancer happens you don’t feel how you thought you would feel.

I’m definitely going through a bout of treatment fatigue. The week after next I’m due for my next round out Lupron and Prolia shots. On Monday I’m going to ask my oncologist if I can postpone them a month. I have not been feeling well for too long, (almost two months now) and I really just want to feel normal for a little bit before I go back to treatment.

When it comes to breast cancer surgeries, the research talks about treatment fatigue. If you do reconstruction after chemotherapy you can end up with breast cancer related surgeries that span two to three years. It is a long drawn out process and many women get tired of the surgeries before they have completed the process. I get that.

The idea of hormone therapy for 10 years is exhausting. I’m not even at year 2 so to imagine that my life for the next 8 years will involve a shot every three months is tiring. The alternative is a surgery to remove my ovaries – but I’m also in treatment fatigue on that front too. I don’t feel the need to remove a body part unnecessarily. I don’t know what the long term impact of that will be.

I expect that if I had a few weeks of feeling better, that I’d be ready to jump back into hormone therapy – knowing that it does reduce the risk of recurrence. It doesn’t prevent it. There is no way of knowing if it is making any difference in me. Statistics are a challenge that way. It makes a statistical difference but it doesn’t necessarily make an individual difference. When you are the individual in question, sometimes that statistics are not relevant. I like to say, it is the statics of one that matters. In my case there are no statistics. My cancer was weird. I had a lot of it, some of it aggressive, but it had not spread outside of my breasts. So I also caught it early – but again, that doesn’t mean that it won’t come back – there is no way to know. Only time will tell.

And so, with that, I fight a bout of treatment fatigue and hope that after a few days of rest I’m feeling better and ready to jump back into it all. Some people use the battle metaphor with cancer – not sure I like that one. In some ways, I like to think of it more as a race. The primary treatment is a series of sprints, but the long term is the marathon – or more like a series of marathons – or maybe it is more like the ultra running races where it is more like running 100 miles and this is done over and over again. Ten years is a long time to be in treatment. When I can only plan 3-6 months in advance, I just cannot see that far – I cannot see the light at the end of the tunnel yet – so I’m hoping for a little sky light to open up and inspire me to keep on running.

Feature Image CC0 Public Domain
Time passes by and we move forward

Fri July 8, 2016

Yesterday was a significant anniversary. It was a day of transitions in my life. It was my father’s birthday (belated Happy Birthday Dad). It was the 8th anniversary of the launch of our GoingEast journey around the world without airplanes . Two years ago today was the day I started chemotherapy.

July 7th has so much significance in my life and yet I missed it yesterday. I was so busy with meetings, and tired after an exhausting week at a long conference. I didn’t notice it was July 7th until 10pm at night when I glanced at the date. In some ways that is good – it means I’m moving on with my life.

I’ve been challenged by several people to look forward and ask myself where I want to go with this PhD. What do I want to do? What are my goals?

After the whole brain MRI thing, I am finding myself needing to find time for stability. I need to find a normal that doesn’t involve the crazy scares and feeling tired and like crap. This PhD time is a time for me to work on things and try to get back to a point where my health is stable enough for me to actually think about where I want to be in two years. I just am not there yet. I’m still picking up the pieces.

I do find it annoying (as do others with hormone positive breast cancer) that the hormone therapy phase is not considered active treatment. This causes a perception that it is easy – no big deal – and that you are healthy and ready to get back to life. Although this is true for some women, it isn’t for many. For me it has been a bit of a roller coaster. I get stable for a bit and then sudden I’m thrown for another loop. I climb back up on step at a time but then suddenly another drop – perhaps not as low as the previous – but it is back again.

I have moment of denial – where I look back and think about how this really isn’t happening to me. Denying the past as a way to reach for a future that doesn’t include constant doctors appointments, and disruptions to all the forward moving things I’m doing.

And as I type this I am just plain tired. I need to nap and relax for a bit. This has been a jam packed week and I need a little down time to process it all – but also a little time to just process nothing and recharge. And with that I shall sign off for today …
Things I do not say

Thu June 23, 2016

I have been reflecting for a while on the things that I do not blog about. I’ve wanted to blog, but I could not. I could not share my fear and anxiety with my family. They had enough happening. They did not need my issues, especially if they turned out to be non-issues, added to their plate of concern. And so I did not blog. I waited to blog. And now that I know it is a non-issue, I have decided to tell this story in reverse chronological order – to reduce the amount of stress and anxiety that goes into reading it – but I also think the story is important as it help to describe some of the additional stresses that living with a breast cancer diagnosis entails.

Today I got a call from my doctor’s nurse practitioner. I was surprised at how quickly the call came. I had an MRI of my brain only last night (at 7:30pm), so to get a call before noon the next day was pretty amazing. He was calling to tell me that the MRI was normal. There were NO signs of metastatic breast cancer. I could go away next week without that worry hanging over my head (yay). At hearing the words I cried. I had been holding in (mostly but not completely) a lot of fear and anxiety over this.

Last week I saw the neuro oncologist for the first time. It took more than a week to get an appointment to see her. I was there on a referral from my regular oncologist. I described my symptoms and she suggested that a brain MRI was in order. They did some neuro tests and some blood pressure tests and validated that my symptoms did not appear to be heart or blood pressure related. The neuro exam was mostly inconclusive. There were no give away symptoms. Because of my history of breast cancer, she wanted to do an MRI. I knew what this meant. The words cancer were not mentioned in the appointment. I did not want to ask because I did not want to hear the answer. I knew that although the neuro exam demonstrated no signs of metastasis they also could not be ruled out. That was the thing, she was completely non-comital. And so I called and booked an MRI.

The week before I sent a message off to my oncologist. For months I’ve been having this weird thing happen where my ears felt like they needed to pop, only they didn’t. It was getting worse. In addition I had a couple of spells that kind of scared me where I had the head full sensation and a little dizziness and disorientation. I didn’t like it. I sent the message and the response I got back was “would you mind seeing a neuro oncologist?”. This scared me. It was not seeing a neurologist, rather it was a neuro oncologist, someone who specializes in brain cancer.

Before that, I had complained about the symptoms to my primary care doctor. I had figured it was all blood pressure related, but my blood pressure was finally under control and the symptoms persisted. She ordered a head CT. I did that. It came back clear. Brain bleeds associated with high blood pressure had been ruled out. The next step from her perspective was a consult with either an ear-nose-throat person or a neurologist.

And so, that is where my head has been the last month or so. We don’t know what the cause of my little ear popping episodes are, but we know that I don’t have cancer in my brain (yay). Although they are a little annoying, they are not specifically problematic. I do want to get to the bottom of it somehow – it might be a drug interaction or side effect given all the meds I’m on. Who knows. I see the neuro oncologist on Monday to see what she has to say about the brain MRI. The good thing is that she can look at it directly and see if there is anything she thinks might be related. She would also be familiar with any potential celiac side effects in addition to the cancer issues.

Before I got the phone call, I decided to take today off and drive up to Big Basin. I got the call while having lunch with my friend Lori before making my way up to Big Basin. I decided that I needed to go anyways – I just needed to spend a little time in the presence of ancient trees. I started this blog post from the table in the feature image. I would loved to have finished it up there but the mosquitoes were too bad. I need to plan better next time.

On the drive home I found myself asking what can I learn from this experience? What is the thing that I should be taking away every time this happens as it is bound to happen again. One of the things that happens when I end up in crisis mode is that I start to re-visit what I’m doing, what I enjoy doing, what I want to keep doing. I find myself asking, is this what I want to be doing if I only have 5 years to live? 20 years? Honestly, I cannot see 20 years out. I’m struggling with planning things that are 3-months out. Five years seems like forever right now. But living in the moment is also not a healthy way to live. I cannot live for only the moment. I need to have something to look forward to. I need to feel that big tasks (marathon length tasks like the PhD) are worth doing. Living only for today doesn’t allow me to think or plan for the future, and that isn’t a healthy way to make your way through life – you need a balance of both forward thinking and being in the present moment. And so, although my future is very uncertain, it doesn’t look like I’m on deaths door just yet. Now that I know my brain is “healthy” I should be able to kick it back into gear and get some work done. We’ll see about that!
It’s that time of year again #cancerversaries

Sun June 12, 2016

What has happened to it all?
Crazy someone say
Where is the life that I recognize?
Gone away

But I won’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

~ Duran Duran, lyrics to “Ordinary World”

It is hard to believe that two years ago today the radiologist told me I had breast cancer. I had felt a hard area in my left breast. After a week I went to see my Family Medicine Doctor. She ordered a diagnostic mammogram – my first ever mammogram. Immediately after the mammogram and ultrasound, the radiologist told me I had breast cancer and sent me immediately to the surgeon who did a biopsy. I was so thankful that the words at the bottom of the appointment sheet said “you will get your results immediately”, so my husband was with me when I saw the radiologist and the surgeon.

I look back over the two years and I’m sad. Somehow a lot of the tough memories seems to stick, where the fun things don’t seem to be as present in my mind. It does remind me that I need to get out and laugh more. I need to have more fun in my life. I also need to reflect on all that I have accomplished in the last two years. I did not just sit back and watch TV for two years (although I did watch a lot during chemo). I walked a lot. I swam a lot. I biked a lot.

I’ve accomplished a lot in the last two years. I’ve had three co-authored papers published, and two more have been submitted for publication. I co-founded Virtually Connecting. I’ve published a couple of short pieces in the online journal In-Training, wrote a piece for the BAYS anthology, and have another piece coming out soon in Wildfire Magazine. I’ve attended many conference and presented at a bunch of them (#et4online, OLC Innovate, AAG Medical Humanities, ALT-C, QUB ePatient, Big Ideas Fest, dLRN, MedicineX Ed, Social Media and Society, Celiac Disease Foundation Annual Conference). On the conference front I’m actually pretty scattered. I go to conferences on Educational Technology, Medical Humanities, and Medical Education. I’m trying to find the space where my research fits. Oh ya, and I’ve written 476 blog posts for this blog! And several for my other blogs (rjh.goingeast.ca, goingeast.ca/blog).

But I still look back on the last two years with some sadness. What I went through doesn’t inspire me. It doesn’t make me feel stronger or a better person. That whole cancer narrative of ‘what doesn’t kill you makes you stronger’ isn’t at all how I feel today, although it is how I feel some days. I’m stronger physically. I can hike a lot further than I’ve been able to hike before. I hiked the 7-mile Mount Tam Peak Hike for prevention while on chemo and then again last year. I also walked 32.5 miles in two days for the Avon walk. I could not have done that before. I am also swimming more. I swim a mile almost every time I get in the pool (once or twice a week). I’m trying to get back on the bike but that is proving to be a bit of a challenge (I think more mentally than physically). And yet I also have lot of physical reminders. I still have neuropathy. I still get random pains from time to time that send me into downward spirals where I need to remind myself that there is most likely a non-cancer reason for the pain. In some ways celiac disease diagnosis was a blessing, because it gave a different reason for some of my pains. Celiac is a huge pain, but it is manageable.

I also have to honor how lost I was before my diagnosis. My PhD research wasn’t going well. I had not made the short list for my dream job and was feeling like I was at a cross roads with respect to career options. A reset is what I needed.

Perhaps the one good thing that came out of the last two years is all the new friends I have. I’m a lot closer to several online friends, but also have some great friends here in California. We like to say ‘the best friends you wish you never met’ – and that is so very true. I have met so many amazing women from different walks of life, all struggling to get through life with this disease.

In March we bought a house. We tackled a bunch of renovations on our own. I did so much more than I thought I could do (and perhaps a little more than I should have done). We are still working on making the house feel like a home – but it is getting there. It is so much nicer than the apartment we were living in before. As I write this I can hear birds chirping outside my window and can hear the keys click on my husband’s keyboard. Our old place the sounds would have been washed out by the ever present traffic noises.

Yesterday, with a group of fellow survivor friends, we did the Bubble Run (we walked the 5km). It was a little crazy actually. We had planned on walking along the shoreline and going to lunch to celebrate the end of a 6-month renewal program we attended. Instead we all signed up for the bubble run and had a crazy time walking through colored bubbles. Seemed appropriate in many ways.

Today, this is my ‘ordinary world’ …
Live life on your own terms

Wed May 25, 2016

Last weekend I attended a memorial service for a friend from support group. She was the first person within my face-to-face circle of friends to die of breast cancer. I find myself wondering, if you die of complications related to the treatment of breast cancer, is it still considered dying of the cancer? Anyways, that aside isn’t relevant to this point of this post.

The over arching message from her celebration of life was that she “lived life on her own terms“. I learned more about her from the service. Our lives were similar in so many ways. I wish I had chance to get to know her better. Our last exchange was a Facebook chat where she said to me, sorry cannot make it but please keep inviting. She died very quickly after her metastatic diagnosis. An aside for those that don’t know, breast cancer doesn’t kill you when it is in your breasts. It kills when it spreads to your bones, liver, lungs, and/or brain. When it spreads to other parts of your body it is called metastatic breast cancer. Some people with metastatic breast cancer live several years after diagnosis. They live in constant treatment jumping from one regime to the next as the disease adapts to each treatment. Life becomes about staying one step ahead of the disease.

I find myself replaying the phrase in my head “live life on your own terms“. I’m not exactly certain what that means, but it seems to help me whenever I doubt myself. Whenever I find myself feeling a bout of impostor syndrome, questioning if I belong someplace or if my contributions matter in the world. Then I think, does it matter if others value what I do as long as I am enjoying what I do? As long at it matters to me? As long as I’m “living life on my own terms” … it is certainly something that I hope people say about me at my celebration of life … “she lived life on her own terms” … that is something worth celebrating.
Place memories

Wed May 18, 2016

The other day I said to my husband that Yosemite was my “cancer place”. The first time I went there was as a brief holiday before the beginning of chemotherapy. We went again for our anniversary while I was in the middle of chemotherapy. My memories of Yosemite are all tied up in my cancer experience. I said the same thing about the condo we rented for the last two years. It is the place I lived when I was diagnosed and went through cancer treatment. I was very ready to move on to a new place that did not have those associations.

The problem with getting cancer right after moving to California, is that I don’t have non-cancer memories of places. Almost every place I go, the memories associated with that place are cancer memories. My brain does not have non-cancer memories to fall back on. The sights, sounds, and smells, all remind me of different times in my cancer journey.

I definitely need to try to find some new places, but I also need to make new memories. I need to create memories in places that are not cancer memories – so that when I go someplace, I’m not remembering my cancer or my cancer recovery, but rather I’m remembering what I enjoyed about the places.

Last week I got to create new memories at a place that I love – Calaveras Big Trees state park. We visited there last summer almost exactly a year ago. We really enjoyed it despite locking ourselves out of our rental van! Last time I wasn’t able to complete the entire South Grove hike – in part because I was hiking too slowly and we had to leave that day.

This time we planned a little better and did the South Grove hike on the day where we did not have any other plans. It was nice to have the freedom of time to explore the trees. Despite my various injuries, I was able to do the complete hike – all 10.8 km of it! I was also able to create some new memories of the place – not involving me and cancer. We enjoyed sharing the Big Tree experience with my sister-in-law, brother-in-law and 9-year niece. I’m happy to say that I now have some new memories of the place – memories that don’t involve me and cancer. I hope to spend the next couple of years working towards re-programming my brain for all the local places. I want to be able to go places and not have flashbacks or be reminded of the emotions I had the last time I was there. I’m ready for California to not be my cancer place!
I didn’t get sick … life with #celiac disease

Thu April 28, 2016

I just had a conversation with a friend about how we need to be better about blogging when things go well. It is so easy to find reason to write and rant about things, but more difficult to remember to write when things go well. So this post is mostly about things going well, with a little stupid mistake on my part.

Last week I spent the three days in New Orleans for an Ed Tech conference. I managed to navigate eating in New Orleans without getting sick. That is a huge success. I had only one minor melt down – and that had more to do with high expectations not being met. We were at a nice restaurant for a special dinner event with 50+ people. I expected that when I requested a gluten free meal (which I did well in advance) that I would get a decent meal. Unfortunately the shared appetizers were not gluten free and there was no effort made to provide something. Then when the meal came I was not given a choice between chicken or fish like everyone else. I was given a piece of dry chicken breast. I had a minor melt down. I refused to eat it. Shed a few tears at the frustration (body filled with sadness), then turned it into anger. I expressed my anger to the wait staff and asked that they asked the chef to make me something better. I would be happy with pan fried piece of fish that was gluten free. This should not be a difficult request. The waiter did well. They took away my dried chicken breast and about 5 minutes later a nice piece of pan fried fish arrived. I am so glad that I found the courage to get up and complain. This is part of my advocacy – I remember writing about it early. I need to speak up for all those with celiac who are not able to. Good restaurants can do better!

I am, unfortunately, very sensitive to gluten. After getting home, I foolishly bought some chocolate ice cream. It was a brand that I have purchased before – organic, local. I’ve always bought the cookies and cream made with gluten-free cookies. I’ve never had a problem. This time I bought the dutch chocolate. The next day I was horribly sick (diarrhea, stomach cramps, felt like a fever). It took me a while to figure out what it was that I had eaten. I should have known better. I recall at the conference in New Orleans someone handing out chocolate bars. I asked if it was gluten free. They said it was just chocolate, so it should be. I explained to him that most chocolate is NOT gluten free, as it is often processed on equipment that also processes gluten. I knew enough in New Orleans not to try it. I should have known that the dutch chocolate flavored ice cream would be a problem. As the saying goes, live and learn.

I am celebrating that I didn’t get sick in New Orleans, and I’m learning that I shouldn’t buy any ice cream that isn’t gluten free. Fortunately, I own a good ice cream machine. Next time I want chocolate ice cream, I’ll make my own.
Fear and UTIs

Sun April 24, 2016

First I want to warn all my readers that this article is going to talk about female stuff. It is going to talk about urinary tract infections (UTIs) and other things related to female body parts. If you don’t want to read it – turn your gaze now …

(more…)
Imbalanced …

Mon April 18, 2016

I wonder, if balance is a verb, is imbalance the opposite? Or just unbalanced? One of the things that I am realizing (or re-realizing as I seem to make this reflection over and over again) – is that I do not understand my bodies cues. The things it used to tell me, the indicators that I need to slow down – I am not really getting them.

After many days of renovating, and packing, and squeezing everything in, my body finally said enough. On Saturday morning at 8am, (we moved on Friday), I developed a whole new kind of chest pain. This was chest pain that I had never felt before – sort of like a heart burn only it wasn’t. It came in waves, and after about the third wave I got up from my desk and walked over to Scott in the back room to explain what was happening. Then another wave hit – and I said “I think I need to go to urgent care”. We quickly got our stuff together (searching for iPads so that we’d have something to occupy our time), and hopped in the car. The waves of pain continued, so rather than going to urgent care, I suggested we go to Emergency at El Camino Hospital (about a 5 minute drive away from the PAMF urgent care). As we arrived, Scott pulled up the car and escorted me in. He had to get a wheelchair for me, as the waves of pain had me afraid to walk. With each wave of chest pain came shortness of breath. It was truly horrible. When we told the receptionist that I had chest pain and shortness of breath, she paged the EKG tech. Within a minute or two (enough time to sign a few papers), someone was there escorting me to a bed. I laid down on the bed and immediately had another wave of pain. She hooked up all the leads, and everything seem to calm down. We waited five minutes and everything was fine. It was long enough to validate that I was not having a heart attack.

Then we waited. I’m not sure how long, but not too long. I was seen by a triage nurse, then we waited some more. The El Camino Hospital Emergency Room is a rather quiet place. Even when busy they are not crazy like Stanford. It was spit and polished clean, and had a very calming atmosphere. It didn’t feel like an emergency room at all. Eventually we were escorted back to a room (a private space – again very unlike Stanford). Someone took my vitals – my BP was slightly elevated but not terrible. I saw the physician assistant. They drew some blood. We waited. Eventually I was told that it didn’t look like a cardiac problem. This was intended to help relieve me. It had the opposite effect. You see, after cancer, everything, if it isn’t something else, looks a lot like cancer. If this wasn’t a heart issue, then what was it? At one point, I looked over to Scott and said “I don’t know what to hope for?” We thought maybe a blood clot? We could not figure out what the least probable cause could be.

They took a chest x-ray. That too came back clear. We did a second round of blood tests – while they kept me under observation – everything was fine. Knowing that the x-ray was clear relieved a little bit of my concern. Certainly, if it was cancer, it would should up on the x-ray wouldn’t it? Eventually the doctor came in and examined it to me. He explained that my pain was all exterior chest muscle (so not heart or lung related). That it was likely related to over-exertion. That is, all the heavy lifting I did the day before during our move (compounded by all the lifting I’ve been doing the last two weeks while we worked on the floors). The doctor’s message was that I needed to do a better job of taking care of myself. He said that the good news was, that the treatment for this was all within my own hands. He recommended Physical Therapy but also that I take a yoga class or some kind of exercise class where I do more stretching. That I needed to stop skipping my swimming because I was too busy renovating. Message heard!

And with that, we returned back the grind that is home renovation and moving out. My hubby got the brunt of it, in that he had to do a lot more running around and finishing up the old place. I’m paying a lot more attention to how much I’m lifting. I’m becoming more and more aware that my body doesn’t give me the same cues it did before. I don’t know that I’ve overdone something until something crazy happens – like severe chest pain – I just don’t know when to stop.

And this brings me back to balance is a verb – and imbalance is the anti-verb – and right now I need to recover from some imbalance so that I can get back to that balance state!
Balance is a verb

Mon April 4, 2016

A friend of mine, Stacey, recently posted about her experience after a weekend retreat at Commonweal. She commented that one of her learnings was that ‘balance is a verb’ (her blog post is here: http://coffeemommy-at-work.blogspot.com/2016/03/balance-is-verb.html).

This idea of balance as a verb has got me thinking. It really resonates because I’ve been in search of the ever elusive balance. Of course, that is the thing that one seems to never have – a work-life balance – a balance between making money and spending it – and of course there is the act of balancing on one foot. It seems the latter balance is the one that is improving most in my life right now!

I was reflecting on it today and it occurred to me that balance is more of a mindset for me. I don’t think I’ll ever find a perfect ‘balance’ (as a noun) between my work and other things that I do. This is in part because I like the work that I do. Since cancer, one of the questions I ask myself regularly is ‘am I enjoying what I do?’ and the answer most of the time is yes.

These last couple of weeks things have gotten insanely crazy. We bought a place – a manufactured home (aka trailer). It needed a little work. We are finding that it actually needed a little more work than we anticipated. We are also being kicked out of the place we are renting. Our lease expires on April 17. We have a looming deadline to get the house ready for occupancy before our lease expires. I’ve booked movers for April 15, but have no clue how we will get our house packed up before the move.

And on top of all that I have end of semester approaching for all the classes I’m teaching. I have no clue how professors manage to teach a ‘full’ course load and still do any research!

So in many ways my balance is off. I’ve had to let a few things go, and postpone a few things, just to get back on track. That is when I remember that ‘balance is a verb’ and I need to actively do things to balance my life. It isn’t something that you search for and find, rather it is something you actively do.

Now to get back to work and demonstrate that I can indeed actively balance all that is on my plate and not drop anything!