BC Becky

Never thought I'd want to be a breast cancer survivor

Year: 2015

  • My cold still lingers on

    My cold still lingers on, although in some ways I’m feeling better. I get tired really easily – and yet I try to get out for at least a short walk each day. The walk gets me away from my computer, and gives my body a chance to stretch out and enjoy the moments of sunshine between the clouds. The weather isn’t as warm as it has been, but still rather nice. If I were feeling better I would consider getting back in the swimming pool. That is something that will have to wait until after this cold goes away. The good news in that, is that my incisions shall be well healed by the time I jump in the pool.

    Every day, either before or after my shower (or both), I look at myself in the mirror. I know many women who are not able to do that. I’m really happy with how my body looks. I see fat on my legs that I’m sure will become more trim when I can finally get back on the bike and ride – again, this cold is sidelining me. Aerobic activity is out of the question until the cough goes away. One day, I’ll find a way to share a photo on this blog. A photo of my scars but also of my new breasts – so that others can see what the type of reconstruction I had actually looks like.

    I am finding that I am remarkably more mobile. I was almost able to do a sun salutation (yoga) last night. I got as far as the plank part, where my core said ‘no chance’. I cannot support my body with my stomach/core just yet. Again, once this cold goes away, I hope to get back to the Y and the Living Strong Living Well program. They have allowed me to enroll in a second session because I could not complete the first. I’m grateful for that opportunity, as I am finding the targeted strength training to be very helpful. I was seeing some great results before my last surgery.

    As my cold lingers on, I am struggling with some emotional / intellectual demons. I find myself going down the path of think I’m never going to feel better, I’m never going to be strong again. The Cognitive Behavioural Therapy is helping me see that I’m telling myself these things. It is helping me figure out how to stop telling myself these things – to re-program how my thinking works when I’m not feeling 100%. I don’t have the answer just yet, but I’m working on it. I’m also giving myself permission to rest … but at some point, and the things on my to do list pile up even higher.

    I’ve never been one to procrastinate in the past, but I’m struggling with it now. I need to start getting back to work, but I struggle with the motivation to get it done. I use the cold as an excuse to not try.  I use chemo brain as an excuse to not try. I tell myself, maybe tomorrow, or maybe next week. It will all be better sometime in the future – but the reality is that I need to stop procrastinating and start trying again. I won’t really know what I’m capable of – or what I’m not capable of – until I try it, but part of me is afraid that if I try I will discover that I cannot do what I used to be able to do. That I will have cognitive deficits. That’s what is really scaring me. And not trying, procrastinating, means I won’t have to find out that I cannot do what I used to be able to do.

    Time is also needed to heal these wounds. I may be finished with treatment and surgery, but I have not healed from those assaults. The neuropathy in my feet is still a significant problem – but I’m feeling changes – I can feel blood flood to my feet (I can feel the swish of my heartbeats). This is a new sensation (very odd). I’ve told that we will not know the extent of my recovery (or damage) for at least another 6-months. Neuropathy can take 18-months post surgery to heal. The cognitive deficits associated with chemotherapy are even less well understood. I’ve learned from various social networks that people start to really get back to their ‘normal’ after about a year. So, right now, I can expect that I will struggle with some things – but that I can hope that as time goes by it will get better. I will regain most of what I had before treatment. It just takes time.

    So, this afternoon, I will try to get some contract work done. I will try to do some of the more technical stuff I used to do with ease. I know that once I get started, I will enjoy doing it, but getting over the initial inertia is hard. I need a push (or maybe another cup of coffee!).

  • I have a cold

    I have a cold. This is the first full blown in my chest, sinus full of cotton balls, cold I’ve had in a long time. In many ways I’m lucky. I’m lucky that I managed to get through chemotherapy and my surgeries without getting sick. If I had this cold during chemotherapy it would have been horrible, and may very well have led to a hospital visit. Fortunately, that did not happen. In some ways, I think my body knew that it couldn’t afford to get sick then, and suddenly, it can now.

    Interestingly, my anxiety levels are way down. This cold feels like a familiar cold. It doesn’t have feelings that remind me of cancer treatment or metastatic disease. The only fear I have with this cold is that I’ll get it every time I try to exercise, or that it will linger on-and-on preventing me from getting back on the bike or back in the pool (this has the effect of making my depression scores higher). Next weekend is Casting for Recovery – the fly fishing retreat that I was selected to participate in. I do not want to be sick for it!

    And so, I’m trying to take it easy. I’m mostly reading and watching TV. I’m trying to drink lots of warm herbal tea. I’ll try and get out for a walk later today if it isn’t raining (yes, it is forecast to actually rain here for the next 3-days). It’s a little cooler outside than it has been lately. This morning, I didn’t go to the market because it was only 12 degrees C outside. I’ve become a wimp, but I’m using the cold as an excuse. I don’t need to go out in the cold or the wet. I need to feel better.

  • Recent moods

    I am highly aware that my most recent blog posts have all seems rather depressing – or at least that is what I’m sensing. I want to say that I’m not really doing that badly. I’m struggling emotionally, and every physical ill (I have a cold now) amplifies the emotional struggles – but I’m doing OK.

    I have taken a new mantra from the book When Panic Attacks: The New, Drug-Free Anxiety Therapy That Can Change Your Life … specifically, “when you change the way you think, you can change the way you feel” … I actually turn it around. When I’m feeling anxious or sad, I remind myself that I have the power to change the way I am thinking, which in-turn, will change the way I am feeling. Most of the time this actually works. It does help me feel better.

    I’ve had a headache for a while, which seems to keep coming back. That had me really worried. I’ve also noticed that I’m not seeing particularly well with my glasses. My oncologist thinks the headaches are most likely caused by not seeing well – that is, the root cause is poor vision, which can be fixed by getting new glasses. After an emotional breakdown over not being able to get an optometrist appointment at my normal eye clinic (a bit of an overreaction on my part), I saw a doctor at Costco yesterday and my new glasses are on order. Hopefully the new glasses will resolve the headache issue.

    I am also struggling a bit with how I am physically feeling. Recovery from this last surgery has been quicker than previous, but it is still slower than I want it to be. It seems that when I try to get out and do more exercise, I end up with a cold. I’m not liking that pattern. It may also just be that my body is finally allowing the colds to happen. Thankfully, I managed to avoid colds and fevers while I was on chemotherapy and while I was preparing for my big surgery. Now that my body isn’t fighting so much to recover from those traumas, it seems that it is allowing itself to get colds – which slow me down. And so, today, being my mental health day is also a physical health day. Today my exercise will be a meandering walk over to the grocery store and back – and other than that, I’ll sit and read and watch TV … maybe if I’m feeling up for it, I might make another batch of raw chocolate (yum).

     

  • Blog Impact Survey

    Hi everyone,

    I’m conducting a study – I want to look at how breast cancer blogs are impacting people who read breast cancer blogs. I’ve put together a survey that takes about 5 minutes to complete. I am most interested in the final question. I am asking you to please take few minutes and complete this survey: http://fluidsurveys.com/s/blogimpact/

    The survey will be open until the end of April.

    Thank-you!

  • The Emperor of All Maladies – Episode 2 – hitting close to home #cancerfilm

    This morning I watched the second episode of Cancer: The Emperor of All Maladies. This episode struck closer to home, as one of the main characters – Laurie – had bilateral breast cancer (although much more aggressive than mine). She had similar treatments – neo-adjuvant chemotherapy and a bilateral mastectomy. At the end of the episode, she talks about the pervasive haunting that is fear of recurrence. I’m glad I was able to watch it this morning. I watched the first episode later in the day yesterday, and it haunted my dreams for the first part of the night. Hopefully a morning viewing will give my brain all day to process, so that I am not bothered in my sleep.

    I found it interesting to learn more about the history of breast cancer research – but also about how some of the different cancers are related.  One of the things I do find a little frustrating with the film is that it keeps jumping back-and-forth in time. One minute you are in the 90s the next you are back in the 80s. It makes it hard to determine which innovations helped influence other innovations.

    I didn’t know about the protests at Genentech. Learning about these things when you live in the area makes it that much more real. In some ways, I feel bad for not having cared at all about cancer (or breast cancer) when I was younger. It was never on my radar. In episode 2, they talk about 1 in 13 women … that statistic has now changed to 1 in 8 … but that is in part because women are living longer (someone in my blog network did an excellent post on this, but alas, I cannot find it – if you remember, please send me a link and I’ll put it here). I think about how far we have come in our protocols for clinical trials – and how some of the protocols needed for good science still cost lives. I also think about how much of a role privilege plays in gaining access to clinical trials.

    I recall when I was first diagnosed that there was potential for me to be in a clinical trial – but alas, I did not qualify because I had bilateral disease – which meant I had multiple cancers. My participation would skew the results. In some ways I find myself constantly questioning – does this mean that I missed my chance at long term survival? What that clinical trial the one that would save me? Of course that is crazy thinking. Part of what haunts me is that two of my three cancers didn’t respond that well to chemotherapy. They didn’t grow, but they didn’t shrink either. I didn’t have the same amazing result that Laurie did. I had a pretty mixed result – with my primary tumor responding very well to chemo and the other two no so much. The reality is that as far as we know now, the current treatment that I received did what it needed to do. My prognosis is good. But alas, as with Laurie in the documentary, I am haunted by thoughts of recurrence … I’m just getting better and better at coping.

  • The Emperor of All Maladies and clinical trials – #cancerfilm

    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.

     

  • Feeling a little embarrassed … definitely relieved

    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!

  • Learned something about my new breasts today …

    I had my post surgery follow up with my plastic surgeon today. All is healing well. Next follow up in three months or so just to check that things are healing well. She did say that I needed to take it easy for the first three weeks after surgery (so another week and a half), and that I should slowly add each sport and see how it goes. She so doesn’t know me … anyways, it will be a challenge, but I shall do my best to take it easy for another week (no biking, no gym, no swimming) – I think I can achieve the latter two, but biking might end up back on the table sometime mid next week. I did get full clearance to return to my range-of-motion exercises (which is more like yoga and gentle exercise).

    I had been told a while back that I should not be looking for “lumps” in my new breasts. That I no longer have breast tissue, so I need not worry about lumps. So, I asked my plastic surgeon about the hard spots at the bottom of my breasts (both can be quite firm). She pointed out that I no longer have lymph nodes in my breasts (my pathology reported that two nodes were removed from each breast as part of the mastectomy – all nodes were clear of cancer). The flap tissue does not have lymph nodes. The tissue left after the mastectomy can swell and fluid can pool because there are no lymph nodes to encourage drainage. If I spend most of my day upright (and I do), then the bottom of my breasts can feel hard (this is especially the case when I lay down). To help soften them I can do some massage to encourage lymph drainage – massaging towards the center chest wall. If the skin, when pinched, looks like an orange peel, that is mastectomy skin and the firmness can be quickly massaged away.  Once I tried it, I saw was surprised that it only took like a minute or two to make things much softer. Why, oh why, did someone not tell me this sooner?

  • Bought my tickets for the #RecklessTour but still nervous about it

    When I found out that Bryan Adams was doing another tour, and that he was playing in Ottawa in February, I was disappointed that there was no way I could travel to see the show. You see, I’m a huge fan. I still remember the first ever time I saw him live (Calgary 1992 Waking up the Neighbours tour) – and the words to “There Will Never Be Another Tonight” made me ignore the folks heckling behind me as I stood up to dance throughout the rest of the show.

    I was lucky to get 4th row tickets for the Corel Center opener, and then Alcatel box seats for his last show at the Corel Center show (I guess they call it ScotiaBank Place now).

    So, I was peachy pleased to learn that he would be playing at Shoreline Amphitheater in Mountain View – but I was also very nervous. Honestly, I was kind of hoping for a show at the SAP Center (where the San Jose Sharks play).  You see, my mobility isn’t what it used to be. Shoreline isn’t a great venue from a parking perspective (one road in and out means lots of traffic). It also is an outdoor venue. In the past, this would not have been a problem, but now, I’m not so sure. I cannot stand for long durations. I also cannot easily get onto and off of the ground. So, the general atmosphere of a show at the Amphitheater doesn’t play well with my current physical abilities.

    I was tempted to skip the concert, but then I hated that I was even considering skipping it. I really don’t want to avoid doing things that I really want to do just because I might need some additional assistance. After exploring a bit, I discovered they do have accessible seats for those with limited mobility (I was able to request them on the LiveNation website directly). I had to pay what felt like a premium for them – but alas – I get what I hope to be decent seats. We will still have to deal with crazy traffic to get there …  I hope they have accessible parking places … and most importantly I hope that I’m not expected to sit during the entire show, cause how can you not stand up and dance to “Summer of ’69″…

  • Loss of optimism

    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.

css.php