Category: active treatment

Overcoming Inertia

When I get up in the morning, I always find it a struggle to get motived to go for a swim (or bike ride). That inertia can sometimes be overwhelming when I’m not feeling 100% – however, once I’m in the pool swimming or on the bike riding, I love it.

To help me keep motivated and overcome this inertia, I’ve done two things. I’ve created a Facebook group (anyone interested is welcome to join it – https://www.facebook.com/groups/RJHexerciseTeam/ – it’s a closed group so I need to approve memberships). This group tracks daily exercise. I see may of my friends doing incredible things to support me in exercising, as they too take on new challenges. It feels good to be joined in the journey, but also helps to encourage me to get out as I need something to write about when I create the exercise poll each morning.

My other way of motivating myself is to set a stretch goal. This is a goal that I may or may not be able to accomplish – something kind of crazy – but also achievable. Chemo may make it impossible, but it gives me a reason to get over that morning inertia and get into the pool (note that I only swim in the morning, because that is when the pool is at its cleanest). Most of the time I have the pool to myself. So, my stretch goal is to do a triathlon in December (after chemo before surgery). I am still trying to find a tri that I can do (something in California so I can easily get there without flying ideally). Regardless of what it is, it helps me when I’m swimming in the pool to swim just a little bit longer (although when I bike I’m trying to hold myself back a bit as I tend to overdo on the bike). I’m now thinking of the couch to 5km program. I’ve never been a big runner (back arthritis makes it a challenge), but I can also walk and work on walking faster.

So, what do you to help get over that inertia? To help motivate you to exercise when you aren’t really feeling like it?

Sat July 19, 2014
Who would have thought … I look sexy in a buzz cut!

Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
As she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut.

Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

Definitely feeling good today 🙂

Fri July 18, 2014
In for an emotional day (maybe)

I’m happy to report that the worst of the bone pains has passed. Once the nurse called me back, she looked into it, and advised that I could take an NSAID (like ibuprofen) for the pain. I have stronger NSAID for my arthritis, so I took one of them and within 30 minutes the pain had almost completely subsided.

Yesterday was also my most tired day. I took a nap at 11am and woke up at 2pm. I clearly needed to spend the day mostly sleeping (although I did do yoga and go for a walk – albeit a short walk). Both the yoga and walk made me feel better – so as much as it is difficult to motivate at times, I know that getting out and exercising does make me feel better.

Today I get to go swimming again. The nurse explained that the bone pain is caused by the overproduction of white blood cells being pushed out from the bone marrow into the blood. Since there are a lot all of a sudden, this causes pain – but it also is a sign of the rebound. So with the pain stopping (I’m sitting writing this with no medication in me – so it isn’t the medication dulling the pain, rather then pain being finished), my blood counts should be back up which means swimming is back on the agenda (yay).

So, if chemo is day 1 (we are recalibrating to a 1 offset rather than 0 as that is what most of the health folks do) then day 11 is my rebound day. I think I will create a graph which will allow me to better forecast symptoms and see if cycle 2 is similar. If I understand this correctly (crossing fingers), I’m not in recovery mode until the next treatment, which has been pushed to Wednesday because my oncologist is on vacation. Currently, the schedule has round three moving back to Monday, but I cannot imagine going back in to chemo at day 12, so we will definitely need to put that out. I may be strong, but I don’t need to unnecessarily push myself for the convenience of someone else’s schedule.

I mention in the title that today may be an emotional one. Today I get my head shaved. If you haven’t done chemo you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments and such. So, when you have an opportunity to take control and do something on your own terms, it can be important for some people to take control. I admit it, I’m a control freak. I like to plan things and I am already struggling with my inability to plan the exact dates of our Hawaii trip because I have no clue how I will be feeling.

And so, I am taking control of my hair, and having it shaved today. Scott will get his head shaved too. We’ll take a fun selfie when it is done! I’m looking forward to seeing what it feels like to have my head rubbed, the same way I like to rub Scott’s head right after a hair cut!

Thu July 17, 2014
This too shall pass

Started at about 5pm last night, I felt these pulsing pains up my spine. By 8pm last night, they were excruciating whenever I was in a seated position. I was lucky that Mom was with me at support group, as she was able to drive me home. I could not imagine having to drive with this happening. I was able to be in the passenger seat with the seat partially reclined, so that I could navigate as mom got her first experience with California driving.

I had been warned about what might happened during the Saturday support group, when one of the ladies explained it. I’m at my blood count low as well (nadir), so I’m also tired. The bone pain is caused by the neulasta, which is a white blood cell booster. What is happening is that as the chemo leaves my system, my bones start reproducing blood cells. My counts should rebound to almost normal in the next day or two. But the white blood cell booster means that my body is also suddenly producing an excess of white blood cells all at once. So the bones go from not producing new blood cells (or producing them slowly) to having a sudden growth spirt, and with that comes pain.

The pain I have now is when I’m sitting (ironic, as I usually cannot work while standing as my arthritis gets in the way, and now I can only work while standing). I may also try going out for a walk, although it is a rather warm day out. I wish I could swim, but with my blood counts low, that is not recommended. I am also in pain if I lay down in the wrong position. So I need to be in just the right position in order to sleep. I’ve asked my oncologist for some good pain meds until this passes – just waiting to hear back. Unfortunately, Wednesday is not the best day to contact them, as my oncologists’ nurse doesn’t work Wednesday (there is someone that covers for her) and my doctor is on vacation this week, so the Wednesday nurse needs to track down the backup oncologist (who doesn’t know me) in order to get that prescription.

If this happens next cycle, I shall be prepared for it! They actually don’t give you much other than anti-nausea meds for the first cycle, and they wait for you call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.

One thing that I’ve learned though is that although neulasta is required for the AC regime I’m on, many women opt to not take it. The clinical evidence is that it reduces hospitalization by 20% – however if you are someone whose white blood cell count doesn’t dip too low, then it is an unnecessary precaution. In essence this is a medication that manages a side-effect of the chemo, and the side effects of the neulasta can be worse than the chemo itself. So it all becomes about deciding which is worse. What the neulasta allows me to do is be more active. If I didn’t take it, then I’d need to be a lot more careful about interacting with people during my low days, as my white blood cells might be a fair bit lower, and therefore my risk of infection higher. Since I need to interactions with people for my mental health, it probably makes more sense for me to deal with the neulasta side effects than it does for me to not take it.

So my motto for day it, ‘this too shall pass’ … although I’m also hoping the nurse calls back soon to tell me they have sent a prescription into the drug store for me!

Wed July 16, 2014
Doing Better

Thank-you everyone for your support during my meltdown phase. I know that I shall have more meltdowns, as they are a natural part of this process. I was actually getting concerned that I had not had one. They are like earthquakes, if you don’t have smaller ones for a while, you end up with a big one. I had a small meltdown during the first chemo treatment, but it wasn’t the ‘big one’ that I knew I had coming. Sunday night was much more of a big meltdown.

I’m highly aware of my emotional state and generally doing what I can to avoid depression. I know that depression is often a ‘normal’ part of a cancer diagnosis. I’ve suffered from depression before, so I know what it feels like, but also, have a sense of when I need to ask for help (or at least I think I do). I know that if I don’t re-bound, then I need to consider anti-depressants – but I’m hoping to avoid that. Shorts bouts of meltdown and crying are OK and even healthy – but if I cannot recover from them, then I know I need help. I will try to avoid anti-depressant medication if I can, but if I feel the need I’m also not opposed to taking it. It just adds one more thing to my list, and unlike most of my current medications, anti-depressants are not “as needed”, rather they require a regular regime with severe side effects for missed / late doses.

After dropping Scott off at the airport for his business trip yesterday morning, Mom and I went for a nice drive along the California coast (Pacifica to Half Moon Bay), stopped for lunch at the Ritz Carleton Half Moon Bay (a bit disappointing, so we won’t repeat that but it was still a nice visit with Mom), and then home along Skyline Boulevard (top of the Santa Cruz Mountain Range). It was nice to take a day off and do some touristy type stuff.

Today I have a dermatologist appointment (follow up from the emergency visit the other day). I’m happy to report that after a day of treatment with creams, my hands are almost completely recovered, with barely a sign of the initial blisters!

With the improvements, I’m going to go for a short bike ride this morning. I’m NOT going to overdo it. I will take out my recumbent so there is little pressure on my hands. I need the cardio in order to stay sane.

I should be on my “low” right now from a blood count level. I don’t actually feel that tired – I’m actually feeling remarkably well. I’m waiting for the ‘brick to drop’ in that some people experience bone pain when the chemo wears off and the neulesta (white blood cell booster) suddenly kicks in. So far, crossing fingers, I’m good.

Tue July 15, 2014
Pondering the PhD
(This article is cross-posted on http://rjh.goingeast.ca).

When I was diagnosed with breast cancer, one of my first decisions was to put my PhD on hold. I had the opportunity to take a one year (maybe longer) leave of absence in the program (that is, to stop the clock). This was a pretty clear decision as my data collection was not complete, and in order to complete it, I would need to travel to Ottawa once per month over the next 6-8 months, which was no longer going to be possible.

With the stop in my PhD data collection, my current research study is coming to an end. I have a few loose ends to tie up, but, unfortunately, I do not believe there will be enough data or enough of a study to complete a dissertation (I may get one or two journal articles out of the data). I am proud of the current state of the first phase of the study, which resulted in the content on the website http://ipad-fm.ca and the eBook “iPadagogy: Employing the iPad as a Clinical Teaching Tool”, which is now available in the iBooks Store.

I’m not sure what I’m going to do when I finish treatment. Treatment just began (20 weeks of chemotherapy, which will be followed by at least two surgeries that will take another 6 months for recovery).

I am pondering my options. In an ideal world, I would go back and begin a new project. One that only takes 3-4 months in data collection, and that would allow me to then get to data analysis and writing of the dissertation. I’ve already spend three and half years doing coursework, writing comprehensive exams, and writing a research proposal. I’ve done small research projects and written and published several peer-reviewed conference papers. I just need to do a good research study that allows me to demonstrate that I can do this, and that gives me enough useful data to write a dissertation.

Looking at going forward options, I am wondering about transferring to another university. I am wondering if there is any way in which to transfer that doesn’t requires a complete ‘restart’. I’m not particularly interested in going back to do two more years of coursework. I’m OK with repeating some stuff, but I’d like a streamlined process. If I’m studying in Canada (or the US I think), I may still be able to access the last two semesters of my SSHRC Doctoral Fellowship – so I even bring with me some funding although not enough to finish the degree. I live in California, and now for medical reasons, a relocation within the next 3-5 years would be complicated and is not really something I’d consider. I’d like to be able to complete my PhD (or EdD for that matter) at a distance – and I’d like to look at some aspect of distance education, the use of new technologies, and faculty development. I also have developed a side interest in medical education – so if there is any cross section of distance education, new technologies, faculty development, and medical education that would be even more interesting – although the medical education aspect is not essential (I’m not an MD).

Today I came across Terry Anderson’s post on “Online Distance Education – Towards a Research Agenda“. My particular areas of interest are identified as:
- The Use of Technology in distance education
- The Cost and Economics of Distance Education (although I’d need to do a lot more reading in this area before I could study it).
- Professional development and faculty support
Actually, I find it interesting that the topics that most interest me all fall within the area categorization of “Meso-level research: Management, Organization, and Technology”.

So, I shall ask anyone reading my blog – any suggestions for Doctorate programs that might allow someone with special circumstances such as mine to transfer in? I’m not 100% certain that this is what I will want do when I’m done treatment, but I do want to explore the options so I know what is feasible / realistic. Thanks.
Tue July 15, 2014
Meltdown

Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part. I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

Mon July 14, 2014
Guilt

One of the interesting feelings that seems to be shared amount those who go through traumatic life experiences (cancer / sudden tumor), is that of guilt – particularly of guilt when you are feeling better or when you are in the presence of others who are sharing a similar but different experiences.

One of the ladies I was talking to at a cancer group mentioned that she was feeling a little like a ‘chemo dropout’. She had a bad (life threatening) reaction to chemo, and because in her case the chemo decision wasn’t so clear (the benefit was marginal) it was clear after the first bad reaction that she would not be continuing with chemo. There were several of us in the room just going through the first cycle of chemo, so she expressed feelings of what I can only describe as ‘survivor guilt’.

I was talking to another friend last night who also went through the traumatic experience of having a tumor removed surgically, and the reconstruction associated with it. However, in his case, the tumor had no cancer – so although he went through a lot of the same experiences – he isn’t considered ‘a survivor’, because he didn’t have cancer and that label, somehow, seems to be required. He also lacked support groups and all the other infrastructure that is in place for those with cancer. But also, he is lucky in that he does not need to deal with the constant fear of re-occurance. So, he has survivor-guilt because he survived but wasn’t as sick as others.

That comparison, that need to be part of the group, and yet the recognition that each journey is individual provides a conflict. There will always be someone who has it easier, but also someone who has a much more difficult time of it. When we are together to sharing there is a bond in that shared experience, but also that twinge of ‘guilt’ when you are doing better than someone else – also a lot of feelings of empathy – tearing at my heart strings – when I see others that are doing much worse – but also personal joy in that I am doing as well as I am. Such a mix of emotions.

I’m not sure that this post is really concluding anything, but making interesting observations about the pull of emotions that is going on right now as I enter my low blood count days (chemo nadir). I’m looking forward to the rebound.

Mon July 14, 2014
So a little more detail …

My post this morning was a little rushed, so I missed a few interesting details. The big question for everyone was why is this happening on my hands and not anywhere else. Most people who have this complication see it on hands and feet or hands/feet/mouth. Several doctors were looking for other locations for the sores, and not seeing any.

It was the on-call dermatologist (happens to specialize in chemo related derm complications so I picked a good night to be in the ER with this issue) that made a comment about ‘motor biking’, that had me saying – on Friday morning I went for a nice long (1hr+) bike ride on my folding bike. The blisters started about two hours after the bike ride. Of my three bikes, this is the one with mountain-bike style handle bars. And that is when the ah-ha moment came. The bumping associated with riding (I do wear gloves but still) didn’t align well with day chemo+4. There is a range in the chemo cycle where I’m more susceptible to this type of thing happening, and any trauma can set it off. The places on my hands where the blisters are align with sweat glands – and trauma to that area when my body is expelling chemo drugs can cause this toxicity effect (at least that is what I currently understand).

She asked if I had been warned about this complication – not that I can think of. That being said, many of the warning have been overly cautious and lacking details. Telling me not to ride or swim is useless, but telling me that I shouldn’t ride an upright bike on days 4-8 is a lot more useful (I now know this is when the chemo is leaving your system, so toxicity effects are most likely) and telling me I shouldn’t swim days 8-12 is also useful (this is when blood counts are low). The overly cautious recommendations would have me sitting on the couch watching TV the entire time – which is actually contra-indicated – exercise has been shown to improve chemo effectiveness as well as decrease side effects. So, I am looking forward to a discussion with the dermatologist on Tuesday where we can actually go through the best times and worst times for specific activities in order to reduce the likelihood of a re-occurrence in the next cycle. I’m also kinda happy that I’m presenting an interesting case for at least one of the doctors at Stanford 😉

Sun July 13, 2014
Not without incident

So my last post on more extreme reactions didn’t exactly get it right. With the blisters still progressing I called the on-call oncologist who didn’t think it was related to the chemo. The location of the sores and my comments about allergic reaction sent her on the wrong track. I took a couple Benadryl as suggested and observed; however, the blisters continued.

After picking up mom and going to support group, I decided it made more sense to stop in at emergency at Stanford than drive home and call the oncologist again, who mentioned that they would need to be seen if the problem persisted. We figured that it was a good idea to check out the emergency procedures anyways, while I was happily ambulatory and not “really sick”, just in case I needed the services at a later time.

After five hours and consultations with the internal medicine resident, oncology resident, on-call oncology fellow, dermatology resident, and on-call dermatology attending (who happened to the be the director of oncology dermatology) it was diagnosed as a reaction to the chemotherapy (Toxic erythema of chemotherapy). What had put people off of the diagnosis earlier is the atypical location of the blisters and the fact that I was doing so well otherwise. They were worried about Steven-Johnson syndrome (SJS), which would have been more severe and would have required IV corticosteroids.

So after five hours we were off to a pharmacy to pick up some creams to help with the symptoms. With this, they treat the symptoms. They don’t change the chemo as it is not considered a severe enough reaction to warrant a change. Unfortunately, the emerg folks at Stanford have out of date information about 24-hour pharmacies, so they sent us to a closed pharmacy. We decided to just go home and deal with it in the morning. In the mean time, ice and the cream I use to numb my port are keeping me sane.

Sun July 13, 2014