Tag: side effects

Lupron woes

Wed February 8, 2017

I’m coming to the end of my three month cycle with lupron. That is, every three months I get an injection of lupron to suppress my ovaries. This is part of my cancer treatment – hormone therapy. What I am finding is that as I come to the end of the cycle I get really moody. I get really sad, but also get frustrated really easily, and I find myself yelling at idiot drivers when I’m in the car. I am self-aware enough to see these things happening – to know that it is not my body in a normal state.

I checked in with one of my support groups to learn that this is not an uncommon phenomena. It is something that annoyingly, doctors dismiss as if it is all in our heads. In many ways, all we need from our doctors is recognition/validation that the symptoms we are experiencing are normal. A simple, that sucks, I’m sorry to hear it but there isn’t much we can do about it would work. Not a blank stare and comment about having not heard of that happening before .. because really, it happens. When doctors don’t acknowledge the issue, patients stop reporting side effects. It is known as learned helplessness. If you appear to not care about the experience, then we will stop telling you about it. But this is not a healthy doctor-patient relationship. In a healthy relationship these things get acknowledged.

Anyways, I’m writing this in part because I’m moody as hell so if you interact with me in the next two weeks you may notice that I’m a little on the crazy side. I’m also writing this because some of my readers are also on lupron. I want to validate for them that these feelings of moodiness are a normal side effect. I have not been that careful of ensuring I get the lupron exactly on time – that is I usually get it a week or two late. My oncologist tells me that is ok – however, if these mood swings are going to be the norm in that period of time then I’m going to be more careful about getting the shot exactly on time. Because the sadness in particular sucks. It drains me. It makes it difficult for me to concentrate and get work done. I really don’t need two weeks of it!

Feature image: By Fvasconcellos – Own work, Public Domain, Link
Not talking = not blogging

Sat August 30, 2014

I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

My mouth sores got bad enough for me to ask for stronger drugs. I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle. The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.
Feeling my nadir today

Wed August 27, 2014

For the last couple of rounds of AC, I’ve actually felt quite strong on my nadir day (day of lowest blood counts). Today, I’m tired.

My biggest struggle today is mouth sores. On the weekend I started to develop mouth sores (the ones on the underside of the tongue are especially painful) and along with it thrush. I’ve now started treatment for the thrush, so my mouth isn’t as full of gunk, but boy do the sores ever hurt! I’m on a pretty much liquid diet, as solid foods get stuck under my tongue and in the back of my cheeks, and I cannot move my tongue well enough to clear it out. I also cannot easily open my mouth wide enough to do a decent job brushing my teeth (plus with low platelets, I need to be really careful with teeth brushing as my gums bleed).

It all sounds rather awful, and feels that way too, but in the grand scheme of things is it more an annoyance that a real problem. I will need to run out to Costco later today (after the plumber comes to look at the toilets) to buy more ice cream. The coolness and non-acidity of ice cream actually relieves a lot of the pain in the mouth and ensure I get in some calories – however, they are not enough nor the right calories for exercise.

I biked to an ophthalmologist appointment yesterday – but that proved to take too much out of me. Biking in the sun, without adequate hydration and an inability to suck on the water bottle (and pain when opening mouth wide enough to get the water bottle nub in my mouth) meant that I was exhausted by the time I arrived (about a 40 minute bike ride). So until I am able to eat solid food (even soft solid food) and hydrate adequately, biking is out. Today is officially an exercise rest day. Tomorrow I’m allowed to get back into the pool, so if I don’t have the energy to bike (cause I’m not eating the right foods today), I can at least do a gentle swim.

I’m looking forward to the rebound!
Nothing quite feels like you expect it

Sat August 23, 2014

One of my fears has been regarding neuropathy. It is a common side effect for the Paclitaxol (aka T-Chemo) which I start on Labour Day (September 1st). It is also a less common side effect for AC chemo. It seems that I’m destined to experience it now!

It all started this morning, with some tingling in my feet. I noticed that the front pads of my feet were a bit tingly (sort of like they were about to fall asleep but had not yet). Unfortunately, it didn’t get any better, and now I’m finding it a bit painful to walk – I can feel myself compensating for the tingly (which is less tingly and more like fine needles stuck into my feet). I only seem to notice it when I’m standing / walking – so it doesn’t bother me at all when I’m sitting or laying down (which is good). It may seem counter-intuitive, but the more I walk, the less painful it is (it isn’t really that painful, rather it is annoying).

So, now I’m going to put on my running shoes and go out for a walk – in hopes that getting the blood flowing to my feet through walking will make the problem go away.
Persistence, Tenacity, and New Blood

Wed August 20, 2014

This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

Perhaps this is a better persistence picture (also in northern Thailand):

My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

Unfortunately, my phone doesn’t take very good photos.

We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).
Feeling strong

Sat August 16, 2014

I am surprised by how all of sudden my strength returns. Where only a week ago I could only swim 7 laps in the pool, I’m now swimming 30 and the only reason I stopped was because I had too many other errands to do.

It seems that with each AC cycle the down days after neulasta are longer, but when my strength does return, I’m stronger than I’ve been before. In cycle three, I walked farther (10km on day 2), cycled farther (36km on day 10), and swam farther (we actually I swam this distance in cycle 2 as well 1200m) – than I had before chemo started.

As I’ve discussed in my last post, I’m also struggling with increasing signs of depression – worsening with each cycle. This in part is related to not have access to my coping mechanisms (exercise) for the longer stretches each cycle. In part because the reality of having breast cancer is sinking in (denial is becoming less and less active in my brain), and a lack of knowing what will come next. Relating to exercise, each added day when I cannot get in a long workout, my stress and anxiety build. I’ll be working with the folks at onc-pysch on developing additional coping strategies, but will also be changing some medications to something new, where the side effects are actual effects that align well with counter-acting the effects of chemo (drowsiness, anti-neasea, and increase appetite). The new meds should also help deal with some of the ‘chemo-pause’ side effects (night hot flashes). We shall see how it all works – but for the next two or three days, I should be feeling strong – and will try to enjoy it while it lasts.

When I was up at Stanford yesterday, I visited my tree. I wish pictures could capture the scent of the eucalyptus.

I’m not nearly as good at taking pictures near myself near the tree – but here I am sporting the new cap Maha sent me from Egypt 🙂
On my way back

Sat August 9, 2014

After the abyss that is day 3 and day 4 after chemo, I feel that I am coming back to life. It is a rather dramatic transition really. Swimming on day three I struggled to swim 7 laps (280m). Today, I thought I’d push myself to make at least 10 laps, but then something clicked – the fatigue let go – and I swam 20 laps (800m).

So the real me is coming back to life. I’m still rather limited in what I can do. Blisters on my hands are re-emerging, and I have blisters on my feet that may limit walking – we’ll see how my feet feel in my new running shoes. Biking is out for a couple more days, as it contributes to the blisters – so swimming is my main exercise until that gets cut off, which by then I hope to be back on the bike and walking again.

One more cycle of AC – there is light at the end of this tunnel.
So I bit the head off of the repair guy

Fri August 8, 2014

It has been one of those kind of days. Actually, I managed to get some real work done this morning, so it hasn’t been a total write off. But I’m tired. Every little errand tires me out. My body aches and I’m nauseated. So when the repair guy called saying that he was at the front gate and wouldn’t come find my apartment, but rather required me to walk out to the front parking entrance to get him, I already was not impressed. Then mid-way through repairing the microwave he sniffles and coughs. OMG. I pretty much freaked out (internally). I texted Scott who suggested that I just ask him to leave.

You see, my immune system is compromised – not really badly – but enough that I was pretty clear when the repair guy came last week that no one was to come if they had a cold. I do not need that right now.

I did not kick him out, but when he started to ask about the co-pay, which my landlord needed to pay, I couldn’t process. My brain was not functioning. I snapped. I said, if you are sick I need to you to leave because I’m having chemo and cannot be exposed. He clearly felt bad and explained that it was just allergies because the people at the last call had a cat. But I still could not manage the mental processing of the co-pay issue. I called Scott on my cell and handed it to the guy. He was able to get the number for the property manager and deal with the co-pay issue. He politely went outside to deal with the issue and just knocked on the door to give me the receipt when it was all done.

I feel kind of bad for snapping – but I just couldn’t manage it. It is frustrating that I can handle some mental tasks really well, but others are beyond my abilities. I’m pretty sure I had the number for the property management folks someplace, but I did not have the capacity to figure out where that might be. I spent all morning working on getting my ethics submitted for my thesis project – so clearly I had some form of mental capacity – but this was just too much. Any capacity for multitasking it pretty much gone!

Ugh, chemo brain!
Transitions matter

Wed August 6, 2014

Talking to my friend Stacey this morning, and reflecting on the BCC (Bay Area Women’s Cancer Connections) Young Women’s Group for those in treatment and post treatment, I see a need for some form of “graduation ceremony” or “bridging ceremony” .

At the BCC Young Women’s group, what I noticed was a very large group, where many close connections had been made. But also, the group was too big for those of us who were new. It was a bit intimidating, but also in order to give each person the 10-15 minutes they needed the group ran over 2.5 hours – which if you are actively in chemo treatment, is just plain exhausting. I had to choose not to attend because I couldn’t bare the thought of being there that long right after treatment.

I struggle with the group being both “in treatment” and “post treatment” because they have another group which is a survivorship group. But what I saw was that with young women the actual post treatment is a long time. Treatment isn’t just surgery, chemo, rads .. it can involve several more surgeries and lots of follow ups. It is almost like they need three groups, one for those of us “in treatment” – cancer warriors as I like to refer to us. But I also see the need for another group to help those who have moved beyond that “in treatment” stage who are still fighting the issues of reoccurrence and addition proactive surgeries. So I see the need for the group, but also I see the need for people to make the transition to other groups, post-treatment, and survivorship, but there is no mechanism that I see to encourage that transition. Without that gentle ‘kick’ to move from one group to the next, the initial group doesn’t provide the support it needs to provide to the young women who are newly navigating the experience.

In my discussions with Stacey this morning, I heard her desire to not be seen as “cancer Stacey”, but rather some new “Stacey” who isn’t first and foremost someone surviving Cancer. Again, I see this as a huge transition. It is a graduation of sorts. Not all women make that transition at particular time, but at some point the transition usually happens. For me personally, I’m looking to the Avon Walk and next fall when I formally re-emerge in into my thesis process as that transition. In the spring, I will begin by attending academic conferences, where I’ll still clearly be Cancer-Becky – as I’ll be hairless, and I may even be presenting on topics relating to being a breast cancer blogger. But in the fall, I will be writing my dissertation, and reporting on my life before cancer. I won’t be writing as “cancer-Becky” I’ll be writing as Ed-Tech Rebecca.

Similar to working through the PhD process, it is important to celebrate the transition we make. Some of them are easily identified (e.g. passing comprehensive exams, getting your proposal accepted, the last day of chemo!). Others are more mental transitions, that take time … but when we are ready to self-identify and make those transitions, it would be so much easier if there were a more formal way to make that declaration – to celebrate the change.

So Stacey .. if you are ready to make the transition, how do you want to celebrate it?
Is it tired or it is fatigue?

Mon August 4, 2014

I find myself asking the question, am I tired? or am I fatigued? I used to think it was the same thing. I’m learning that it is not.

The symptoms are similar if not the same. Heavy eyelids, yawning, lack of energy.

When I’m tired, I can take a nap and I usually fall asleep quickly. When I’m fatigued, laying in bed results in restless lying around, and sleep does not come. Fatigue responds better to exercise than it does to sleep; however, overcoming the inertia of fatigue in order to get to the exercise is a challenge.

For the most part, this chemo cycle has been easier on me than the first cycle. I knew what to expect and I knew when to take which medications, and I charted out which days to avoid certain activities. I managed the side effects a lot better. However, the one side effect that I felt more of throughout, was fatigue. At various times, I found myself weighted down with fatigue. I felt tired but napping was ineffective.

Now that I appreciate the difference, I know what to do. This morning I was definitely feeling fatigue. Trying to go back to sleep didn’t help. Hopping in the pool and swimming 800m did. Feeling much more full of energy now – hopefully enough to tackle Costco and Safeway so the house is well stocked when nausea hits!