Category: Emotional Journey

I am glad to have learned that the PBS mini-series Cancer: The Emperor of All Maladies (based on the book – The Emperor of All Maladies: A Biography of Cancer) – is available to watch at http://cancerfilms.org/media-gallery/?media=cancer-the-emperor-of-all-maladies—episode-

I wasn’t certain that I would want to watch it. I had learned about the book when I was first diagnosed, but the whole idea of reading about cancer was overwhelming. As it is, I cannot read about cancer too near to bed-time, otherwise I have difficulty sleeping. So, it was with trepidation that I clicked the link and started watching. Several of my blogger friends have commented on their inability or ability to watch the mini-series. As a survivor, it cannot be viewed without some emotion.

I really enjoyed the first episode. It is facilitating to learn not just about the disease itself, but also about how clinical trials were first established. Throughout the first episode, I found myself listening and trying to figure out how this or that innovation led to the treatment that I received. It helped me better appreciate the role of surgery as a first line of defense in some cancer treatment. As I watched, I found that I was a bit sad about not being able to participate in clinical trials. The bilateral nature of my disease excluded me from the only trial that qualified for. I have read through various blogs that many breast cancer clinical trials fail to find enough participants (although I haven’t been able to find a good reference for that fact – if any of my readers have a good source, please let me know). At the time of diagnosis, I was more interested in getting into treatment quickly, then I was at finding a clinical trial. It is one aspect of diagnosis that is quite odd really – before I had cancer, I had not even considered clinical trials.

When I was first trying to decide on which chemotherapy regime to take – my oncologist gave me two choices – AC-T (A-Adriamycin, C-Cytoxan, T-Taxol) or TC (Taxotere and Cytoxan) – I made my choice based upon the side effects of the two regimes, but also based upon what I understood to be the standard of care in Canada – because I’m Canadian, and it was something I could trust. What I didn’t understand at the time, was that the AC-T treatment was an older treatment than the TC treatment. This meant that a lot more is known about the AC-T regime – however, it doesn’t mean that the regime is better – just that it has been around longer and therefore more is known about the longer term side effects. It is always going to be the case that the older regime is going to be better understood, because it will have been studied for longer. It doesn’t necessarily mean that it is better (or worse) than the alternate regime. There is a nuisance there that I didn’t completely appreciate when I made my decision. I might have given TC more of a thought had I appreciated that because it was newer, less is published about it. That being said, the potential side effects for TC were things that I knew my body was both prone to, but also things that my body would have a harder time coping with – so the decision for AC-T was the right one for me. I also do wondering about my decision for neo-adjuvant chemotherapy. Again this is an area where the standard of practice is changing – there is not nearly as much written about it as there is adjuvant chemotherapy. In some ways, I am sad that I’m not directly part of a study that looks at the long term effectiveness of neo-adjuvant chemotherapy as opposed to adjuvant chemo.

Watching the first episode has me wanting to go out in search of clinical trials – if for no other reason, then to validate that I don’t actually qualify for any right now. On one hand, it would be great to be part of new treatments which have such promise, but on the other hand, an unknown drug with unknown side effects isn’t exactly something I feel I can deal with right now. I have participated in a couple of studies that involve me giving my blood for the sake of science. For me, those are easy trials to agree to. I can spare a couple of vials of blood now and then – and if my blood can help further breast cancer research, then I’m happy to comply.

I’m looking forward to Episode 2 of Cancer: The Emperor of All Maladies.

The fear of recurrence is ever present, and yet I’m feeling like I can begin to let go of that worry.

I saw my oncologist today about a headache and other pains. They had me scared. The oncologist did some tests and confirmed that is was nothing to worry about – that I should follow up with my ophthalmologist/optometrist as I definitely am in need of new glasses. One of the side effects of tamoxifen is vision changes, but that is typically vision changes due to cataracts, not refraction changes. Chemotherapy can also affect the moisture in your lenses. Since I had cataract surgery before I had cancer, my lenses are already implants. So vision changes are not necessarily directly attributable to cancer treatment. Either way, I’m not seeing road signs clearly even with glasses on, so it is time to go get my vision checked – and once I get new glasses, I’ll need to book my drivers road test so I can finally get my California drivers license!

I feel a little embarrassed. I went through waves of convincing myself that I had mets (metastatic disease) … I know I need to stop doing that. I find that I need the appeal to authority to help me stop the negative thinking, to move beyond it. This time, however, my oncology appointed ended better than my last. I don’t feel nearly as abandoned – more I feel supported – which is in part what I needed.

I’m doing some cognitive behavioural therapy (CBT) – when I first heard someone use the acronym, I got confused thinking they were talking about “Computer based training” – Cognitive Based Therapy uses the premise that you can change the way you feel by changing the way you think. I’m working through it with a good book (recommended by my therapist) – When Panic Attacks: The New, Drug-Free Anxiety Therapy That Can Change Your Life – So far, it is really helping. That’s a good thing. I’m finding that I can apply some of the techniques to other aspects of my life (e.g. Impostor syndrome) so that is good too.

And so, my oncologist encouraged me to get on with my life. He also wants me to exercise more – which is amusing – the only reason I’m not is because I was told by my plastic surgeon to take it easy – so I’m easing back into exercise. I went out for a short (10km – 1hr) ride on the trike yesterday. I’m certainly weak – but today I’m feeling stronger than yesterday – so that is good. Tomorrow I may try a short ride on my foldie. Recovery involves taking one step at a time, even when you really just want to take one giant leap!

At one support group meeting, someone mentioned that one thing they mourned was the ‘loss of innocence’ – more, it is the loss of the expectation that you will be healthy.

You see, before cancer, when I went to the doctor for a check-up, I expected that she would tell me that everything was OK. At worse, the doc might say that I could stand to lose a few pound (oh how I hate the BMI as measure of health – especially when physical fitness level not taken into consideration). In general though, I did not go into the appointment with any expectation that something would be wrong.

Now, when I go to see the doctor – even for routine checkups – I’m always afraid there will be something wrong. I am terrified (sometimes for days) that the doctor will find something. That the something will be yet another side effect of cancer, or worse yet, cancer again. I’ve totally lost that sense of things are going to be fine – that the outcome of the appointment wont be something serious.

So, I mourn the loss of the expectation that things will be fine. Instead, I go into the appointment all stressed out, waiting for the next shoe to drop. When the appointment is over, and I’m declared healthy, I take a deep breath and sigh in relief. I so want that sense of innocence back – the sense of optimism rather than the sense of brokenness.

At a support group the other night, some of the folks mentioned that they found things got easier as time progressed. That is, it was really hard during that time of uncertainty when you first get your diagnosis, but it got easier as you were in active treatment. I hate to be the one to burst their bubble, but my reality anyways is that it has gotten a lot harder after active treatment. During active treatment your doctors want to hear about your side effects, they want to do something to help reduce the side effects you are experiencing. After active treatment, it feels more like they are abandoning you – you are not interesting anymore – and your longer term side effects are not something they want to manage.

So, for me, at this point in time, I’m finding things a lot harder than I did during active treatment. My doctors are telling me to go away and come back in 6-months, and yet I’m still suffering from side effects. I’m also having to deal with fear – the constant sense that every time a part of my body hurts I’m afraid of metastasis. Every headache, every muscle ache (bone ache), the arthritis in my back … all of it brings on a paralyzing fear of disease spread – and yet my doctors don’t want to see me anymore. I feel like I’ve become this high-maintenance patient because I want some form of follow up … I want some form of confirmation that I’m doing OK. I also want some validation that my side effects are real, and that they suck … and perhaps maybe something can be done about some of them (or not) … some of the issues will take time to get better, and there really isn’t much else that can be done … I do wonder if the doctors also feel powerless at this point? Maybe this is why they don’t want more follow-up? … because they cannot do anything about it either … only time will help heal some of my wounds.

My point is, I’m finding this time a lot harder than I found other times in this journey. I’m struggling to reclaim parts of my life, while I deal with debilitating joint aches, feet that hurt when I walk, difficulty standing up after sitting for a few minutes, and an inability to get a decent  nights sleep … I’m trying to stay away from pain meds, and for the next week (pre-surgery) need to stop my anti-inflammatory meds, which in-turn means more joint pain and more difficulty moving, and more difficulty sleeping … and it all effects my mental and emotional well being. I  struggle with not going down that rabbit hole of “what if the cancer spreads” but that fight is really difficult when I haven’t had enough sleep … maybe I just need a few more hugs … so if you see me in the next week, feel free to give me a real hug … cause right now, I don’t hurt so much physically as I do mentally and hugs really help!

I’ve been having sleeping trouble since about September. Taxol chemo seem to be the first thing that impacted my sleep. Then it was surgery. With the combination, I also gained some weight – which really annoys me – because I struggle enough with body image that gaining chemo weight that then doesn’t come off because of the other meds such as tamoxifen is just plain frustrating. When my oncologist mentioned weight gain as an issue I was annoyed – since it was the stupid drugs that he is giving me that caused it (yes, this is an emotional rather than rational response) but also, even a side remark about weight gain has an amplified effect on my body image. I will need to work on that! My husband constantly reminds me not to focus on the weight, rather to focus on the strength. I know he is right, but it is still frustrating. I am getting stronger every day, and my endurance is improving.

I know that sleep is critical to my well being – both physically and emotionally. Not sleeping well also contributes to the weight gain, which contributes to the not sleeping well. It is all a vicious cycle. What my oncologist didn’t say, was that it might not actually be the weight so much as the lack of estrogen and progesterone that is causing my sleep issues!

After the last surgery, I started snoring, and my husband noticed issues with my breathing while asleep – and so, I asked for a referral to the sleep clinic. Yesterday, I saw the doctors there. The Fellow was nice, but I really wish she would have admitted that she knew nothing about breast cancer. It became pretty clear by her questions – she clearly did not know about the effects of chemotherapy (causing a temporary or early onset menopause), nor the anti-hormone treatment. I could have helped to educate her but also provide more relevant information, had she been willing to admit she didn’t understand the treatments for the disease, or really the disease itself. Anyways, her supervisor (preceptor) was a really old guy – reminding me of the ancient professors who never retire – but he knew exactly what was up. Once he heard breast cancer, chemotherapy, and tamoxifen, he knew. He did a quick examination and said “you have a narrow airway”. The lack of estrogen and progesterone in your body, in addition to weight gain, can cause sleep apnea. In part this is why men are often diagnosed with it earlier in their life, but rarely are women diagnosed before menopause. He referred me to the sleep study to confirm the diagnosis but also said to have a CPAP on standby – cause he was pretty sure of what the outcome would be.

And so the side effects continue. I remind myself that I’m lucky to be alive, and that without the treatments that I’m receiving death was pretty much a certainty (I had a pretty aggressive cancer). I’m also lucky to have access to the healthcare that I do, and that I shall soon have treatment that will let me sleep better. I’m doing the sleep study after surgery, since they need a week to get pre-approval from my insurance, and I will need a couple weeks to recover from surgery before doing the study. So, I shall cope with a few more weeks of not great quality sleep. I am comforted knowing that it was not something caused by the anesthesia (especially given that I’m going in for surgery next week). Knowing that sleep apnea can be related to the lack of estrogen and progesterone is something that I wish I knew sooner. I would have worried less, and sought treatment for it sooner. Oh well, as Alanis Morrisette says “you live, you learn” (http://www.azlyrics.com/lyrics/alanismorissette/youlearn.html, https://www.youtube.com/watch?v=Ci5j9yQ-528).

I have been completely fascinated with how my hair was growing. I also was completely attached to it – not wanting to do anything to it – but it was so darn unruly. Adding to the complication, my eyebrows are falling out again. I knew this was a possibility – as many have mentioned the second wave of hair loss specifically the eyelashes and eyebrows. My lashes seem fine for now, but the brows are noticeably thin such that I need to use a sweatband again (yes, your eyebrows do serve a purpose – to keep sweat from dripping into your eyes).

So after my shower this afternoon I suggested to hubby that he should run the clippers through my hair. I don’t have enough new hair to justify the price of a professional haircut, but the ends were certainly more fuzz then hair. He didn’t wait for me to change my mind. He started with the longest setting (me cringing as hair fell into the bathtub), but then needed to go one shorter – so clipped it off with a number 7. It probably could go shorter yet, but I’m so attached to it I just can’t give that much up! It feels a lot thicker now and is much easier to manage. The number 7 didn’t take off all the fuzzy white bits, so the hair still looks grey, but is starting to be a little darker.

Yesterday I watched Grey’s Anatomy (spoiler alert!) – I’m one that loves my medical dramas! On it there was a patient with an incurable brain tumor who also happened to be a specialized fetal surgeon. As always with medical dramas the amazing neurosurgeon at the hospital offers some hope. This character has been on the show since the beginning of the season and finally they got to the point where they had her go for surgery. (here comes the spoiler part) After many days go by she finally wakes up. I was a little annoyed at how quickly she woke up and was chipper and her old self – as if that really happens – anyways, when she wakes up they test her for various potential issues of brain damage – for the most part she is OK, however, she is completely blind. At this point a bunch of the surgeons are all depressed and sad (and crying) like they failed but she says “I’ll learn to adapt” but more importantly, that was the point – that she was alive such that she had the opportunity to learn to adapt – so it wasn’t a sad story, rather an amazing one of survival against the odds.

I tell this story because it has a large impact on me. You see, I have yet to come to a point of acceptance that cancer would have killed me had I not done treatment. Not accepting that, means that I find myself doubting that I made the right decisions, but also regretting every ache in my body. Before cancer, I was healthy and strong – stronger than I had been in many years – it wasn’t the cancer that made me weak, it was the treatment! So, I think of the chemotherapy and surgery as a loss – the things that cancer took away from me – rather than as a breath of new life – the opportunities to continue with my life in perhaps a more focused manner than before cancer. I need to start remembering that before chemo, although I was strong, the lumps in my breasts were starting to cause pain – they hurt – I wasn’t perfectly healthy before treatment, rather I had a disease that was trying to kill me.

It is one thing to say it, but another to really internalize it. Saying it is the first step … so yesterday I took another baby step on the path towards wellness.