Category: Research Data

They say …
not to read too much on the Internet, and yet it is the internet that is helping ensure I am better prepared for chemo. There are a few things no one mentioned to me, that I’m now finding out:
- You should go to the dentist and get your teeth cleaned prior to chemo. You should not have teeth cleaning during chemo as there is a risk of infection, but also chemo can cause mouth sores, which makes a dental cleaning that much more difficult. So, I found a dentist and had my teeth cleaned last week.
- I’m now seeing that I might need a shingles vaccine. I think this is a live vaccine, so cannot be given during chemo. I might already be too late (t minus 1 week).
I have no idea what else I’m missing … but the best bit of advice I’ve had so far is to take some time off before going into treatment. We are still planning to head up to Yosemite on Monday after my ultrasound – but we are opting for a hotel rather than a campsite. I need to know that I have access to showers, so my port incisions don’t get infected. Although it is not the same as camping, it will still be nice to spend some time hiking and meditating in nature.
Sun June 29, 2014
TV Breast Cancer

Now, I don’t watch a lot of TV, so my perceptions may be off a bit, but I’m still a little mad. When someone on a TV show gets breast cancer, they don’t portray it right at all. They don’t show you the decisions that need to be made. They seem to always show you someone going through chemo – which many women with breast cancer don’t do – and they don’t show you surgery – which pretty much all women with breast cancer do. By dramatizing the whole experience they do nothing to prepare you for the reality of it. This makes me rather mad!

Specifically, I remember last year one of the lead characters on Parenthood had breast cancer. She lost her hair, she got sick, she ended up in the hospital at one point because she ignored an infection – but they never dealt with the surgical implications of breast cancer – the dealing with what it means to have a part of your body cut off – and what it means in our society to not have a breasts. So yes, I’m expressing anger again, so perhaps that is the phase I’m beginning to enter in ernest.

I’m also annoyed at our society. The entire concept of reconstruction is so much more emphasized here in the US. I recall one of the women in my PhD class commenting that this was “silicone valley” as in the land of fake boobs (she was mixing up LA and San Fran) – but from a breast cancer perspective, it certainly is the land of fake boobs (although from what I understand many people choose techniques that use their own body fat rather than silicone implants). It is like people will think I am weird if I do not opt for reconstruction – and yet I see all these non-essential surgeries and the extra pains that women go through – and I question it. Why would I want to subject myself to that (yes, there is some irony here, in that I had PRK eye surgery, but there was a defined quality of life benefit for that – I just don’t see that defined quality of life benefit for reconstruction). Many of the women I know going through reconstruction did not have chemo – so they had one less toxic experience with breast cancer – but still.

In some ways, I think dealing with an inside cancer is harder and in other ways it is easier. With a lymphoma, it is much more serious because you cannot simply “cut it out”, but then you also don’t have to deal the surgical implications of cutting off a body part. I also feel for those who have slow growing cancers, who cannot actually feel their tumors. If you don’t have the physical evidence of the cancer, the doubt creeps in – do I really have cancer? Worse is that until treatment, you don’t feel sick – so there is also the perception that it is the treatment that makes you sick. I’m not quite in that case, as I have a large mass in my left breast. There is no mistaking it. It is there. But I do feel it regularly, and I question, “it is getting smaller on its own”, “it is spontaneously curing itself”, “maybe I don’t have to do this chemo thing after all”. I can only imagine how much worse those doubts would be with an invisible cancer that you cannot feel.

Right now, I’m feeling strong. With each passing day the wound associated with the port is healing. I’m hoping for a longer bike ride today – might even try riding one of my upright bikes. I should be able to swim by next week, depending on when the third biopsy occurs. By not have surgery first, I’m loosing some certainty in the cancer – as they cannot fully stage it until it is removed and full pathology is done. I’m finding that the imaging doesn’t provide enough detail – to go from one larger tumor to two smaller ones under MRI which was not seen on ultrasound (although they are double checking on Monday) and mammogram, demonstrates the lack of accuracy in imaging.

Sun June 29, 2014
The Cactus Garden

Today was mostly a quiet day, with a great visit from a friend, and a quick trip up to Stanford for an EKG (baseline prior to chemo). Since I arrived early, they seem to have a habit of telling me my appointments are 20-30 minutes before they actually schedule the appointment, I took the extra half hour to take a closer look at the cactus garden. Just before the garden, there are a bunch of trees that have been relocated into giant transplant containers. They are building a new hospital, so there is construction everywhere. Apparently, they try to save a lot of the trees during construction, and replant them when the buildings are finished.

I find it interesting that Royal Roads University has a rose garden, and Stanford University has a cactus garden.

And of course the requisite selfie in front of my tree :-), I notice that it is starting to loose a little more of its bark. Thanks Maha for the lovely scarves – this one does a great job hiding my port incision.

Sat June 28, 2014
The Power Port or Dignity Port

So, I had my port installed yesterday. The interventional radiologist that installed it told me he was installing a Power Port, but the package they gave me calls it a Dignity port – so now I don’t know what kind of port they actually installed! I’ll have to make a phone call over to interventional radiology (IR) when their office opens to get clarification (it is completely under the skin, so I cannot see it). Looking on the Internet, they are different things. I kind of like the PowerPort better just for the name. When he said it was a PowerPort (rather than mediport), I thought immediately of the Power Rangers, and thought myself a super hero. I kind of like the idea that I’ve had super powers installed – as I think I’ll need them as the weeks progress!

I’ve heard from several others on chemo that it was a good decision to just get the port. The idea is that with the port, they don’t need to find a vein each time they need to draw blood or give treatment. Given how difficult it is for them to draw blood from me under ideal circumstances, this was actually a pretty easy decision for me.

The procedure itself went well. It wasn’t at all the same kind of sedation as cataract surgery, though they called it the same thing. I was pretty much high as a kite blabbing away to the drug dealer (nurse who gives the drugs). He said he visited Canada and asked about the unique Canadian food. It took me a minute, then I realized he was talking about poutine! It is funny because we see poutine on some menus here (they try and make if fancy with spicy gravy and totally do it wrong), and it is associated with Canada – where I’ve always associated it with Quebec. Somehow we managed to talk about poutine for half an hour while the surgery was being done. Again, I was pretty loopy and talkative, and what I remember most is that my mouth was pretty dry from talking too much after not having had anything to eat or drink since the night before.

Immediately after surgery they offered me food (I was starving) and a drink. I think I ate more yesterday than I’ve eaten for weeks!

With all else that was going on, I also managed to slip in a teeth cleaning yesterday. I had seen the dentist back in March in Ottawa, so it wasn’t strictly necessary – but I read somewhere that it is recommended to do it before chemo. You cannot do it during chemo, as you have an increased risk of infection and one of the potential side effects is mouth sores. So, that was one more task off the pre-chemo checklist. We liked the dentist, so that too is one more relocation task accomplished.

We are hoping to get a few days off of everything next week. Scott had booked vacation over a month ago (pre cancer diagnosis), and we have a campsite booked at Yosemite Monday – Friday. We won’t stay that long, but it would be nice to go up for a couple of nights. I haven’t been to Yosemite yet (its about a 4 hour drive from here), and I’d love the opportunity to spend a couple or few days in nature forgetting about the last few weeks (decompressing) and mentally preparing for the months ahead.

Fri June 27, 2014
Preparations

I’ve talked before about how other things I have done in my life have prepared me well for this new journey. At the chemo class yesterday, the nurse talked about taking it one step at a time but also about celebrating between the various phases. This is very much the same advice given when you start a PhD. It is said “this is a marathon, not a sprint”.

Also similar is the challenge in planning. Many of my PhD friends can relate to the challenge in planning things like family vacations. There are so many variables, and so many uncertainties, that planning is difficult. You want to make sure you are in a good place to actually take a break.

And I’m a planner. I’m someone that likes to have things mapped out. I had my schedule mapped up to the end of 2014 – exactly how I would get my data collection finished, the number of trips to Ottawa, various conferences. Now I just don’t know. It is nice (and yet scary) to have a start date, but there are still so many uncertainties. I’ll get to learn a lot about blood counts – if any of my counts fall too low, they will pause treatment to allow them to recover. This of course, will put a wrench into any plans that I make.

Fortunately, I also have the experience of our bike trip to draw on. There, we adapted. Although we still had some scheduled components. We had container ships to catch – and the ships wouldn’t be waiting for us – we needed to be there when they were there. At times, that meant using trains or buses to help us get to where the ships were going to be. We had to adapt our plans.

With the shift of chemo start to July 7th, and hopefully not too many doctors appointments next week, we have a chance to get away for a few days (we hope). Well before the whole cancer thing, we had booked a campsite up at Yosemite for a few days. Although we had originally planned for four nights, we may only go up for a couple of nights – but still, it will be nice to get away. I have not yet been to Yosemite, so it will be nice to see what all the fuss is about.

Thu June 26, 2014
Significance of dates and getting ready for chemo

It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care.

Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

Chemo calendar:
July 7 – AC
July 21 – AC
Aug 4 – AC
Aug 18 – AC
Sep 1 through Nov 17 – weekly T

Thu June 26, 2014
The calm and then the storm

Yesterday was one of those calm then stormy days. It began with a breakfast meeting with a new friend, whom I met through the social network myBCTeam.com. It turns out that we have a lot in common, and I think we would find ourselves as friend regardless of the cancer connection. She has a wealth of knowledge around breast cancer and resources available, which I’m sure will prove to be very helpful. I never thought that having breast cancer would be the thing that made it easier for us to meet people in California.

I had not heard anything from Stanford until the afternoon. Then I got a call from interventional radiology. These are the folks that place the port. I now have that booked for Thursday. They use twilight sedation, similar to what they do with cataract surgery. They use a small incision (exactly what small means is definitely relative) to place a port directly into the vein. The port lives under the skin, so once the incision is healed I can swim and shower/bath without worry.

Shortly thereafter I had a call from my oncologist (MO). He suggested that I could start chemo as early as Thursday – right after the port is placed. His call had woken me up from a pretty sound nap, so I was not even sure how to answer. I had to first answer the question of ‘which chemo’. I decided on AC-T. I had a gut feel about that one from the beginning. The MO said it was the one that about 80% of women who need chemo for hormone positive breast cancer get (this means they understand the side effects and how to treat them). Also, shortly after making that decision, my second oncologist confirmed that is the one she would recommend. So, I’ve heard from multiple sources that it is the right choice – and it feels like the right choice. So, both quantitative me and qualitative me agree on this one.

I decided that I will not start chemo on Thursday even if it is an option (it still needs to clear insurance). It is all too fast, and I need to be mentally and physically prepared. Mostly, I need to ensure I’m well hydrated for a couple of days before and the placing of the port with twilight sedation means fasting prior to – so pretty the opposite of what my body needs.

So, if I start on Monday it will go something like this (assuming there are no issues that cause breaks):

June 30 – AC
July 14 – AC (on this regime, hair typically falls out after second treatment, grows back during T)
July 28 – AC
Aug 11 – AC
Aug 25 – T weekly for 12 weeks (until November 10)

Some people are completely tired/fatigued during chemo. Others continue to work throughout. Apparently getting regular exercise helps to reduce the side effects, so I shall be trying to get out for walks and regular bike rides although perhaps not climbing too many mountains. Fortunately the paths near here are pretty flat. If my balance goes, we’ll look into renting or buying a used trike … we’ll make this happen!

After that, there is a break for recovery before surgery. We are thinking a week or two on the big island in Hawaii! Last time we went to the Big Island (in 2006) we wanted to rent a VW camper van, but couldn’t because our Canadian car insurance would only cover continental US and we couldn’t find anyplace to buy insurance. Now that we have US car insurance, we’ll look into that option again.

Wed June 25, 2014
Slash, Burn, Poison, and Starve

A new friend commented to me that the treatments for cancer were to slash, burn, and/or poison. It bugs me that the most effective treatment and first choice is always to ‘cut it out’. I’ve added starve to the list for breast cancer, as that is one of the more effective treatments if you have positive receptors.

Slash refers to surgery. It is often the first line of defense – just cut it out. For many women with small slow growing tumors, this is the only treatment required.

Burn refers to radiation. Radiation is another localized treatment. If there is a risk of the cancer spreading locally (usually goes with the lumpectomy choice of surgery rather than mastectomy, where the surgeon cannot alway tell whether they ‘got it all’) then radiation is used to burn away any cancer cells that might remain.

Poison refers to chemo. Chemo is a systemic treatment and affects your entire body. The reason you do chemo is to try to make sure that all cancer cells in your body are killed. If there are any cells floating around, you want to make sure they have been killed.

Starve refers to hormone therapy. I’ve added this one to the list. If your cancer is hormone positive (80% of breast cancer is), then what is known is that the cancer feeds on Estrogen or Progesterone or both. So, once the slash/burn/poison treatments are complete you move on to starvation treatment that suppresses your bodies ability to produce the hormones that the cancer feeds on.

One challenge many women face is with the starvation therapies. People often see the ‘treatment’ as finished after slash/burn/poison, and don’t realize longer duration effects of the hormone therapy. The duration of the hormone therapy keeps changing. They are back up to recommending 10-years of tamoxifin for pre-menopausal women (this had been reduced to 5 years at one point). Treatment doesn’t end just because you are not visiting the hospital once a week for an infusion. It becomes a silent pill that you take every day for 10-years, all along praying that the cancer doesn’t return.

I’m not ready to contemplate the 10 years of treatment. I’m not ready to think beyond the first cycle – which for me will be poison. I’m too afraid of the spread. Doing surgery first would have meant a 4-6 week delay in the start of chemo – that is a 4-6 week opportunity for the cancer to spread.

Wed June 25, 2014
Should I blog?

As a blogger, I often get asked ‘should I blog?’ I can testify as to why I blog and the benefits that blogging provides for me, but I also don’t think that blogging is for everyone. Blogging is work. Even with inspiration a single blog post can take 1-2 hours to write. If you aren’t a writer, then the act of blogging can be difficult (heck, even if you are a writer it can be difficult).

One of the benefits of blogging versus writing for other mediums is that you have complete flexibility. You don’t have a requirement to write every day or every week. You can write whenever you are inspired. That being said, if you don’t write regularly, then your readership will fall off – people will worry about you – because they use your blog as a way to gauge how you are doing.

As a cancer blogger, one of the benefits I’ve experienced is that I only need to write things once. Anyone who cares about it can choose to read my updates. There is no need for people to read every detail of my experience, but those who want to know the details can choose to read about it on my blog. I don’t have to type endless emails with the same information.

If you aren’t typically a public person, there are private blogging options. You can create a private blog on WordPress or Blogger, where only those you invite can see it. A better choice might be Caring Bridge. Caring Bridge let’s you setup a website where you post updates but it provides a way to coordinate what you need. You give access to your friends and family and they can use that as a way to figure out how to help you. I may yet need to set this up, as I go into chemo – we may need local help with food – not sure yet as I don’t understand the implications of chemo. I usually prepare the meals – but does chemo mean that I cannot cook for Scott for the first 48-hours? I don’t know yet. It isn’t just about a desire to not cook, there is a real health concern regarding passing on the chemo drugs to your care givers.

So when people ask me ‘should I blog?’ I first tell them to think really hard about it. How public do they want to be? How much do they like writing? Why do they want to blog? And then I offer to help – if you want to blog, I’m happy to help you get started. It is the least that I could do!

Tue June 24, 2014
Knowing what to expect
“In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

The two options look something like this:
- option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
- option 2: docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC
They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.
Tue June 24, 2014