Tag: emotions

Lupron woes

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

Wed February 8, 2017
More time together

I recall someone mentioning that one of the things they enjoyed during treatment was all the extra time they spent with their spouse. This is something that had not really occurred to me.

My hubby and I spent every waking moment (pretty much) together for 16-months while on our bike trip. Then we spent 1 year living on opposite sides of the country when he moved to SF and I stayed in Ottawa to work on my PhD. So, we’ve see-sawed on this. We’ve spent a lot of time together and we’ve spend not enough time together. One of the reasons I chose to moved to SF when I did (rather than stick around longer in Ottawa) was that I didn’t like living apart. I remember telling myself that we would not intentionally do that again.

When I was diagnosed, it caused a re-set on many things. It also caused us to spend more time together – and not just more time in the infusion chair – we really spent more time with each other. Looking back over my blog posts (part of my research), I notice that I mention conversations we had while walking together in the early morning (chemo mucks with sleep patterns). It also brought me back to when we were first dating. We would often go on long walks and chat about this or that.

Reading about the walks made me realize that I’m missing them. With re-emergence life is starting to get busy again. We are starting to fall into old patterns. Not that we were not happy before, just that there was a new level of intimacy and connection that happened when we spent that intense time together. I didn’t realize I was missing it until I read about it on my blog. And so, with that, we shall try harder to make sure we have time in our week to walk – time to chat about anything and nothing all at once. We know that self-care is important, but couple-care is import too.

Feature image (c) Rebecca J. Hogue

Tue January 24, 2017
December 17 – Just another day

Today was a typical Saturday. At 6am my alarm goes off. I roll out of bed and make myself a cup of coffee. I look at the thermometer and notices that it is 14 degrees inside the house (brrr) and only 1 degree outside – cold enough to cover vegetation with a layer of frost. Shortly before 7am, we hop in the car so I can drop my husband off for his carpool into the city.

The colder day means that I can find parking at one of my favorite hiking spots – Rancho San Antonio. I am always amazed at how often I cannot get a parking spot at 7am. I climb out of the car and grab my hiking poles. I find myself wishing I had remembered to bring gloves. With the cold, I tuck my poles under my arm and pull down the sleeves of my jacket to cover my freezing cold fingers. I walk. I decide to explore a different route, turning right instead of left. The trail look more like a road than a path. I find it switching back and forth while each step brings me higher on the hillside. After 30 minutes, being unsure whether or not this path takes me back to the parking lot, I ask the first runner that passes me whether or not this trail loops back. He informs me that no, it does not. I am not where I thought I was. I’ve already walked more than 6 km so decide it is time to turn around. I will have to save climbing to the end of the road for another day. When I get back to the car I stop my activity tracker. I hiked 10km (about 6 miles) in 2.5 hours. At about this time last year, this was a typical Saturday morning hike.

After the hike, I make my way to the Sunnyvale Farmer’s market. The market doesn’t open until 9am, so the morning hike means that I can stop by the market on my way home. Walking through the market, collecting fruit and vegetables for the week, I enjoy sampling the many different fruits that are currently in season. This takes a bite off of my post hike hunger. I discovered that there are still some good organic persimmons. I had thought the season was over, so I am pleased and grab 10 or so. The total comes to $5, so I find myself wishing I had grabbed more. I also discover that several of the stalls still have tomatoes. It has been three years since moving to California and I still don’t understand the seasons here!

Once I’m stocked up with fresh produce, I head home for a quick shower and some lunch. Since it is the third Saturday of the month, I have a support group meeting at Bay Area Cancer Connections. I’m so thankful that this place exists. I think of how hesitant I was the first time I attended. My husband pretty much forced me to go. I was still having trouble even saying that I had breast cancer.

After group, I head home for a brief time and try to get some work done. An hour later my phone beeps with a text telling me that my husband will be ready for pickup in 30 minutes. I have just enough time to finish what I was doing before hopping in the car. When we get home, I throw together some dinner influenced by left overs from last night.

A pretty typical Saturday. What makes this particular Saturday different is that it is December 17. Last year on December 17 I felt sad. I was a little surprised by that feeling. This year, I don’t seem to have any special emotions. I am not sad, nor am I happy. I’m having a pretty typical, not particularly interesting day.

What’s so special about December 17? On December 17, 2014 I had a nipple sparing double-mastectomy with immediate DIEP flap reconstruction – a 10+ hour surgery. The double-mastectomy removed the last of the known breast cancer from my body. Because I did immediate reconstruction, it also represented the last big hurdle in my treatment and a transition from active treatment to active recovery. December 17 represents my cancer-free day. I’ve been cancer free (or at least free of any known cancer, one never really knows) for 2 years. Let’s hope that I have many more uneventful December 17ths in my future!

Sat December 17, 2016
Feeling my nadir today

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!

Wed August 27, 2014
Is it tired or it is fatigue?

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!

Mon August 4, 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
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
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
Chemo day in pictures …

Step one was to have the access placed into my port. This allows the nurse to draw blood for blood tests, but is also used for the infusion of chemo itself.

Since they need to wait for the blood test results, we had about a half hour between the blood draw and the appointment with the oncologist, so we went over for the standard tree picture. This one indicates how I was feeling.

And here is the more typical me with a smile on!

My first reaction came at all the pre-chemo drugs. I’m still not certain what they all were. Three of them were anti-nausea drugs and one is a steroid. I thought we had the print out of what they all were but I cannot find it.

This is the Doxorbicin (or the A in the AC regime). It is administered directly by the nurse. It was followed by Cyclophaphouride (C) which was a 1 hour IV drip. Although the appointment was for five hours, it didn’t take that long. I totally broke down when she brought the tubes of red stuff – but not nearly as much as I expected I would. The emotional breakdowns are inevitable.
This one was actually taken at the beginning while we were waiting for the nurse (notice the IV isn’t hooked up yet). Afterwards I was looking a little on the green side – but not feeling too bad. The steroids wore off at about 3-4 pm and the nausea started to kick in. Hope that ends today!

Wed July 9, 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