BC Becky

Never Thought I’d Want to be a Breast Cancer Survivor

Author: Becky

  • Grumpiness …

    Today I was pretty grumpy by the time we made it into infusion. I ended up waiting an hour after my appointment time before I got a chair – they were out of chairs and beds, so I had to wait until one cleared. Then when I got one, it was in the corner – it feels like I’m tucked away. The person beside me had the curtain drawn so I felt like I was in a little cave. I was already grumpy, so waiting an extra hour and getting a crappy spot didn’t make me happy.

    Then the order in the system was wrong. It showed the amount of steroid I was on for cycles one and two (20mg) instead of the change we made last cycle (8mg). As I write we are still waiting confirmation, but we did manage to get the nurse to let me take 8mg while we wait for the call from my oncologist (the nurse checked with my oncologists nurse practitioner). Because I take the steroid by pill, I need to wait 30 minutes after taking the steroid before chemo – so waiting for the call back and then having to wait another 30 minutes was really trying my patience.

    Honestly, I’m just getting tired of the chemo routine. The last few weeks I’ve had more bad days than good days. I keep hoping for a rebound, but it isn’t coming as quickly as I’d like. After today I will be 1/3 of the way through taxol. Can’t wait for this to be done!

    Fortunately the nurses are so friendly that after a few minutes, I started to feel a little less grumpy – to that is good. I don’t like grumpy Becky!

    We had some time between the blood draw and the infusion appointment, so we walked over to my tree for photos and sat down and enjoyed a brief picnic lunch.

    Photo & Video Sharing by SmugMug

    Photo & Video Sharing by SmugMug

  • Breast reconstruction (academic analysis)

    In preparation for my consult with plastic surgery this week, I’ve been doing some reading on patient satisfaction after breast reconstruction. I began by asking the medical information officers at Bay Area Cancer Connections for a link to a few articles. From there, the academic in me took over, and I search and read a variety of articles regarding post reconstruction patient satisfaction.

    First off, I should start by pointing out an important blog post written by Nancy on why post-cancer breast reconstruction is not a boob job. When looking at patient satisfaction, I focused on post-cancer reconstruction which is a lot more complex than cosmetic reconstruction.

    I should also point out the my literature review focused on autologous reconstruction, in particular on DIEP flat reconstruction – as this is what I currently believe I’m most interested in. I’ll have a better sense after the consult, as I don’t yet know that I’m a candidate (although I think I am).

    Important terms:

    • Autologous reconstruction is reconstruction that involves the patients own tissue (e.g. DIEP flap, TRAM flap).
    • Prophylactic mastectomy (PMX) is the removal of the healthy breast to reduce the likelihood of re-occurrence of breast cancer. PMX is also performed on women who after unilateral mastectomy dislike the lack of symmetry.

    In my literature review, some interesting things emerged:

    • In a great general article on breast reconstruction Serletti et al (2011) indicate that “studies suggest that generic counseling increases the likelihood of choosing prophylactic mastectomy, despite the fact that BRCA accounts for only 5 to 10 percent of all breast cancers” (Serletti et al, 2011, p.124e). In other words, seeing a generic counsellor likely increases prophylactic mastectomy. Now, given that you typically are referred to a genetic counsellor if you have a family history and/or are diagnosed under 45 years of age, I’m not completely surprised by this.
    • The biggest factor in determining timing for reconstruction should be whether or not radiation therapy is required, as “several studies have identified postreconstruction radiation therapy as an independent risk factor for volume loss, fat necrosis, and poor cosmetics”  (Serletti et al, 2011, p.129e). That being said, women are generally happier (sooner) with immediate reconstruction. That is, Zhong et al, 2012 highlight that post-surgery happiness is the same, however, the time post-mastectomy pre-reconstruction women are less happy. However, the reason for delayed reconstruction is usually cancer treatment, so I’m not surprised they would be less happy!
    • The rates of implant-based surgeries in the US has dramatically increased (as compared to autologous reconstructions option) (Albornoz et al, 2013) despite literature that indicates that patients longer term satisfaction is greater with autologous reconstruction (Yuch et al, 2010). This in part may be attributed to the increased surgeon compensation rates, but also the availability of operating room time. Autologous surgeries take significantly more time to perform and the hourly rate of compensation by insurance companies in the US is lower than for implant-based surgeries (Albornoz et al, 2013) . One of the studies I read said that university hospitals did not show this same increase in implant surgeries – highlighting the economic reason for the increase (I can’t find the reference now).
    • “The strongest predictors of implant reconstruction were procedures performed after 2002, Medicare recipients, bilateral mastectomy defects, and patients operated on in the West and Midwest regions” (Albornoz et al, 2013, p.21).
    • “It is now mandatory for partitioners caring for women with breast cancer to inform them about reconstruction” (Albornoz et al, 2013, p.20).
    • “Studies suggest the increase in bilateral mastectomies is attributable not to the changing incidence of bilateral breast cancer but rather to the growing use of contralateral prophylactic mastectomy” (Albornoz et al, 2013, p.21-22).
    • In a Canadian study that looked at patient outcomes after autologous reconstruction patients scores on breast, sexual well being, and psychosocial well being improved after surgery (measured at 3-weeks and 3-months). The only negative finding was that at 3-months patients scored lower on abdominal well-being – that is, even after 3-months patients felt a decrease in their abdominal health. Note that the surgeries in question were predominantly DIEP flap which did not involve muscle from the donor site (Zhong et al, 2012).
    • Both Zhong et al (2012) and Yueh et al (2010) indicate that women undergoing DIEP surgery travelled further for treatment. This is likely because it requires specially trained surgeons (surgeons trained in microsurgery) and as a result the surgery is only available in major centers (more commonly offered in academic settings – in part also because surgeons are not compensates as much for autologous surgery as they are for implant surgery).
    • Institutions that do more flap surgery have better flap surgery outcomes (significantly). Specifically, “in centers with a high volume of microsurgical procedures and experienced surgeons, the number of total flap losses tends to be low, an dis consistent with our flap loss rate of 1.8% in the DIEP flap group” (Momoh et al, 2012, p.22). I’ve seen numbers as high at 10% for flap loss rate.
    • Patients who have reconstruction have increased body image afterwards (Gopie et el, 2014) – not a comparative study – so doesn’t say anything about body image of patients who don’t have reconstruction – does breast cancer create a more positive body image regardless of type of post mastectomy surgery choice?
    • In Canada the barriers to immediate reconstruction for flap surgeries include availability of operating rooms and experienced surgeons. Socioeconomics play a role in whether Canadians get access to immediate flap reconstruction. Women travel to special centers to access immediate flap reconstruction (Zhong et al, 2014).
    • With abdominal flap reconstruction, patients are not necessarily satisfied with the abdominal outcomes. This highlights the need to better set patient expectations regarding not just the breast outcomes but also the abdominal surgery outcomes (Niddam et al, 2014).
    • In looking at a large insurance claims database, Jagsi et al (2014) note that 76% of patients who underwent bilateral mastectomy opted for reconstruction. They also note that those who underwent radio therapy were less likely to undergo reconstruction. That being said, I wonder if the radiotherapy numbers include lumpectomies (which they would), such that reconstruction is less likely to be necessary.
    • In a study looking at risk factors associated with blood transfusions and DIEP surgery, Fischer et al (2014) looked at neo-adjuvant chemotherapy but did not indicate that it was a risk factor. Those who have blood transfusions are more likely to have complications (no mention of causality in the study – so it could also be said that those who have complications are more likely to have blood transfusions). One thing that is useful to look at if you are having the longer bilateral mastectomy with reconstruction surgery is giving your own blood in advance of the surgery, so that you can have it available for transfusion. I’m not sure if this is even possible when you have neo-adjuvant chemo.
    • Lundberg et al (2014) reviewed the literature and provided a view that DIEP surgery is only cost effective in patients who have been treated with radiotherapy (and are therefore not candidates for implants). They point out that the studies done so far use “bad science” (I don’t agree – this article reads as somewhat biased itself). They do say that if you are a smoker, you should stop smoking 4-weeks before DIEP flat surgery in order to significantly reduce complications. They also point out the BMI over 30 is a risk factor. What is interesting here is that you need to have enough body fat to have enough fat at the donor site, but too much fat reduces the likelihood of successful outcome. It will be interesting to see what the plastics folks say for me.
    • Lundberg et al (2014) recommend “angiography … preoperatively to find out if the flap has perforators and can provide the anatomical prerequisites for the operation to be successful” (p. 108)
    • Those undergoing nipple sparing surgeries are more likely (>88%) to have immediate reconstruction (Albornoz et al, 2013).
    • Serletti et al (2011) highlight that many patients “begin by saying they do not want implant reconstruction” (p.125e).

    One of the challenges with using literature to help inform your decision is that it is all based upon the past. As was highlighted by Lundbert et al. (2014), the techniques and tools (e.g. implants) used today are not the same as those used 5 and 10 years ago. As a result, the studies involving longer term outcomes are not truly representative. In many ways the surgery will be a gamble – the decision may be based upon the best information available at the time, but there is always the random chance variable that we just don’t know. In many ways, my surgery choice needs to be in part based upon my gut feel – the same as my decision for neo-adjuvant chemotherapy. I have to choose based upon what ‘feels’ right for me, after collecting all the evidence I can.

    In looking at the literature I am most concerned about studies regarding the cost/benefit analysis of the different reconstruction types. There is a significant trend towards implant based reconstruction. This can be attributed to the change in technology being used (a new type of silicon implant was approved in 2006), but also because it requires less time in surgery, and it therefore easier to schedule. In addition, the autologous surgeries require specially trained plastic surgeons – which means women need to travel to major centers in order to have this type of surgery (makes me glad that I’m being treated at Stanford!). My concern is that the cost/benefit studies will be used by insurance companies to deny women specific types of surgery. Although the Women’s Health and Cancer Right Act of 1998 requires that insurance companies cover reconstruction, I’m not sure how comprehensive that coverage is and whether insurance companies can limit it to types of reconstruction?

    OK, I have a few more articles to read, but I’m not getting much new information – which means I’m reaching saturation on this particular literature review.

    If you want a copy of a particular article and don’t have access, send me an email.

    References

    Albornoz, C. R., Bach, P. B., Mehrara, B. J., Disa, J. J., Pusic, A. L., McCarthy, C. M., . . . Matros, E. (2013). A paradigm shift in U.S. Breast reconstruction: increasing implant rates. Plast Reconstr Surg, 131(1), 15-23. doi:10.1097/PRS.0b013e3182729cde

    Gopie, J. P., ter Kuile, M. M., Timman, R., Mureau, M. A., & Tibben, A. (2014). Impact of delayed implant and DIEP flap breast reconstruction on body image and sexual satisfaction: a prospective follow-up study. Psychooncology, 23(1), 100-107. doi:10.1002/pon.3377

    Jagsi, R., Jiang, J., Momoh, A. O., Alderman, A., Giordano, S. H., Buchholz, T. A., . . . Smith, B. D. (2014). Trends and variation in use of breast reconstruction in patients with breast cancer undergoing mastectomy in the United States. J Clin Oncol, 32(9), 919-926. doi:10.1200/JCO.2013.52.2284

    Lundberg, J., Thorarinsson, A., Karlsson, P., Ringberg, A., Frisell, J., Hatschek, T., . . . Elander, A. (2014). When is the deep inferior epigastric artery flap indicated for breast reconstruction in patients not treated with radiotherapy? Ann Plast Surg, 73(1), 105-113. doi:10.1097/SAP.0b013e31826cafd0

    Momoh, A. O., Colakoglu, S., Westvik, T. S., Curtis, M. S., Yueh, J. H., de Blacam, C., . . . Lee, B. T. (2012). Analysis of complications and patient satisfaction in pedicled transverse rectus abdominis myocutaneous and deep inferior epigastric perforator flap breast reconstruction. Ann Plast Surg, 69(1), 19-23. doi:10.1097/SAP.0b013e318221b578

    Niddam, J., Bosc, R., Lange, F., Chader, H., Hersant, B., Bigorie, V., . . . Meningaud, J. P. (2014). DIEP flap for breast reconstruction: retrospective evaluation of patient satisfaction on abdominal results. J Plast Reconstr Aesthet Surg, 67(6), 789-796. doi:10.1016/j.bjps.2014.02.008

    Serletti, J. M., Fosnot, J., Nelson, J. A., Disa, J. J., & Bucky, L. P. (2011). Breast reconstruction after breast cancer. Plast Reconstr Surg, 127(6), 124e-135e. doi:10.1097/PRS.0b013e318213a2e6

    Yueh, J. H., Slavin, S. A., Adesiyun, T., Nyame, T. T., Gautam, S., Morris, D. J., . . . Lee, B. T. (2010). Patient satisfaction in postmastectomy breast reconstruction: a comparative evaluation of DIEP, TRAM, latissimus flap, and implant techniques. Plast Reconstr Surg, 125(6), 1585-1595. doi:10.1097/PRS.0b013e3181cb6351

    Zhong, T., Fernandes, K. A., Saskin, R., Sutradhar, R., Platt, J., Beber, B. A., . . . Baxter, N. N. (2014). Barriers to immediate breast reconstruction in the Canadian universal health care system. J Clin Oncol, 32(20), 2133-2141. doi:10.1200/JCO.2013.53.0774

    Zhong, T., McCarthy, C., Min, S., Zhang, J., Beber, B., Pusic, A. L., & Hofer, S. O. (2012). Patient satisfaction and health-related quality of life after autologous tissue breast reconstruction: a prospective analysis of early postoperative outcomes. Cancer, 118(6), 1701-1709. doi:10.1002/cncr.26417

  • I wasn’t sure …

    … but I’m pretty certain now … my oncologist warned that it might happen, and that I should not worry … it has no relation to the effectiveness of the chemo …

    … the hair on my head has started to grow back! It is still pretty thin – where I had mostly shiny head before, I’m starting to show a 5 o’clock shadow. It will likely be several months before I have “hair”, but I can definitely feel the difference in the stubbliness of my scalp.

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  • Sometimes feeling better is cosmetic but you don’t see it

    This is the second time that I’ve heard this – having nipples makes a huge difference to self confidence (thanks Stacey for the honest and open blog post).

    There is a company that makes temporary rub-on nipple tattoos for women post-mastectomy. You can even buy them in variety packs, to help you decide which colour you prefer. This allows women to try various shades prior to having permanent tattoos. What I find interesting is how this is such a contrast to the Look Good Feel Better workshop. Here the nipple tattoos are applied under the clothing. They aren’t meant to be seen by the general public. I’ve heard women comment that having them makes them feel whole again. When they look down, suddenly things look right again. They find comfort in that.

    I have no idea what I’m going to do about my nipples (but part of the reason for this blog post is so I don’t loose the link to the temporary tattoos!). I don’t know if I’ll actually get a choice in the matter – the cancer may mean that they cannot be saved. I don’t know. I also find myself debating whether I want to save them (I hate wearing bras at the best of times) – but then I read posts like Stacey’s and I hear from other survivors – and I think, perhaps having my own nipples will help me recover? It might make the recovery process easier (from a mental perspective rather than a physical one). I don’t know.

    Sometimes what you don’t see on the outside makes a very big difference on the inside …

  • Feeling guilty after the make-up workshop

    After chemo on Monday I attended the Look Good Feel Better workshop – this is a free two hour workshop for women with cancer. The focus of the workshop is make-up. Immediately after the workshop, I didn’t feel better, rather I felt guilty. Why did I bother?

    Had I not be lured into the workshop by people saying it was excellent, I likely would not have chosen to attend. I had been warned, but the warning was from back in Canada, where surely, it was different. Unfortunately, I don’t think it was that different (or perhaps not different at all). If you are someone like likes to put on make-up in the morning, and who wants to learn how some tricks of the trade by professional estheticians, then you may very well enjoy the workshop. But don’t expect the facilitator to know anything about cancer – and don’t expect them to know what make-up is good for you – and don’t even expect that the make-up kit you receive will contain make-up you can use after the workshop. They categorize the make-up into three colour schemes (light, medium, dark). Given that I was a medium, the medium range is pretty wide! You don’t know what colors or even what types of make-up are in the kit until after you open it – at which time it cannot be re-used.

    My behavior made me experiencing cognitive dissonance. In one breath, I am asking you to help sponsor my fundraising walk that raises awareness about the chemicals in our life that increase risk of breast cancer, in the next breath I’m attending a cosmetic workshop where some of these chemicals are used to produce beauty products that I do not need and will not use.

    So, in short, if you are someone who wears make-up and wants to spend a couple of hours getting some tips from professional estheticians, then you will likely enjoy the workshop. If you are someone like me, who never wears make-up (I wear the occasional lipstick), then don’t bother. It is both a waste of your time, but is also an environmental waste – as all the free make-up you are given will need to be tossed out once you open it. Here is a selfie of me with make-up … it didn’t last long as the foundation irritated my skin, so I washed it off shortly after the workshop!

    2014-09-15 14.40.59

     

  • Thanks for the hugs

    First I want to say ‘thanks for the hugs’. I received several emails and virtual hugs after my post yesterday. I really appreciate the support – and often when I get into one of my down moods, I just need a little encouragement.

    I know that I tend to ‘catastrophize’  – that is, to imagine the worst possible scenario. I am especially prone to this type of thinking when I’m not feeling physically well. Pain or weakness make me more prone to catastrophising.

    The first step to stopping is in part to recognize that it is happening. It wasn’t long after I posted “I’m scared” that I realized that I was ‘catastrophising’. My brain was stuck in a loop of ‘worse-case’ and not moving beyond that. Once I realized it was happening, I can then change my thinking. The reality is that although I’m feeling neuropathy and pain, it isn’t that bad. I have ways to manage it. The worst of it is limited to about 12-72 hours (depends on the cycle), and for the most part, things clear up before the next cycle. I’m not at a point where stopping Taxol is a real consideration – not yet anyways – and we’ll cross that bridge when we come to it.

    I’ve now processed the things that I was worrying about. We can deal with the wrenches in the path when/if we need to…

    It is important for me to write about my feelings when they are happening – even when they aren’t happy comfortable feelings. If I don’t write about my down days, I’m not being honest to the journey – but also, others who read my blog need to hear that down days are a normal part of this process too.

    Today I’m doing better. Thanks for the hugs.

     

  • I’m scared

    I have given myself permission to go into surgery kicking and screaming. I’m OK with not being calm and collected when I get rolled into surgery. It is natural to not want to deal with it.

    But, what has got me scared today? I went for a bike ride and the exercise seem to make the neuropathy worse! Unfortunately, my 18km ride today will likely be my last ride on my road bike until after Taxol – unless something changes. In addition to making the neuropathy worse, my sense of disorientation is not ideal when riding that bike. I’m further off the ground than on my ‘bent and I feel like things move too fast. The bike itself is less stable – so more risk of falling. I shall miss it, but alas, it may be time to start looking into indoor exercise options!

    On Monday, when my oncologist mentioned that if the neuropathy gets too bad, we stop the chemo and move up the surgery date – that scared me. I have things planned – I have plane tickets booked. I don’t want to have to change my plans … I want to continue to feel like I am in control of this process … so today I’m scared. Scared that my well laid plans will all need to be tossed to the side as I deal with this disease … ugh

     

     

  • Sunscreen

    [Update: Several people recommend the following website for a list of Environmentally friendly / chemical friendly sunscreens: http://www.ewg.org/2014sunscreen/best-sunscreens/best-beach-sport-sunscreens/]

    So, I have a question. The folks as Breast Cancer Fund have indicated that some of the chemicals used in sunscreens are endocrine disruptors and are therefore bad.

    The article on harmful chemicals is here: Sunscreens (UV Filters). The bad chemicals are listed as:

    “3-(4-methylbenzylidene)-camphor (4-MBC), octyl-methoxycinnamate (OMC), octyl-dimethyl-PABA (OD-PABA), bexophenome-3 (Bp-3) and homosalate (HMS) (Krause, 2012; Schlumpf, 2001).”

    I primarily use:

    1. Coppertone Sport (cream), active ingredients are: Avobenzone, Homosalate, Octisalate, and octocrylene.
    2. Coppertone Sport (spray), active ingredients are: Avobenzone, Homosalate, Octisalate, and Oxybenzone
    3. Aveeno daily moisturizer, active ingredients are: Avobenzone, Octinoxate, and Octisalate

    OK, so looking at this, it looks like Coppertone Sport would not be recommended (sad face) – so now I need a recommendation for a good waterproof / sweatproof sunscreen that doesn’t contain any bad chemicals. Any thoughts? (the print on the bottles is so small that it is really difficult for me to read!). I notice that some of the Aveeno products also use Homosalate, specifically I have a bottle of Broad Spectrum SFP 50 for Face that contains Homosalate.

    So, for those of you reading this, can you do me a favour and check the ingredients on the sunscreen you use … and let me know if you find one that is sweatproof / waterproof and doesn’t contain any of the bad chemicals listed above. Thanks.

     

     

  • Bear with me – I’m busy – and cognitively challenged

    So this morning I found myself busy. My brain is in overdrive from a thinking perspective, but I do not have the time to get everything done that I want to do. I cannot keep up with everything on my to do list.

    Part of this is trying to get all of the errands I need driving done (DMV, grocery store, bike repair, reiki apt) as well as all of the things that I want to get done that require more concentration – and trying to pack them all into the same day – plus I want to go for a long bike ride while I have strength for that. I think I may be a little over committed.

    In running my errands this morning/afternoon, I notice that my visual cognitive disassociation is happening sooner this cycle; however, it is isn’t as sudden shift and at this point in time is not really that bad – I’m aware of it, but it isn’t bad enough to really affect my ability to do things. I’m still thinking well, and even problem solving – just perhaps, not as quickly as I’d like. So, this cycle I haven’t suddenly noticed that I couldn’t process, however, I’m feeling a mild version of the disassociation. I’m still comfortable driving when I’m alone in the car with no music. I am reminded of my grandmother as she was getting older (and her very early signs of dementia – before we recognized it as such). She would say that she was OK driving alone, but she was very uncomfortable driving with other people in the car. I can totally relate to that feeling.

    One of my errands this morning was a trip to the DMV. When I had tried to book a driving test previously, the person on the phone said they could not book an appointment beyond the time of my temporary permit, and that I first needed to go in the office and renew my temporary permit. I was told that I did not actually need to do the driving test for 1 year after the written, but I needed to have a valid temporary permit. At this point in time, I’m not comfortable committing to a date for the road test, because I have too much variability in my treatment and side effects.

    When I talked to the agent at the DMV, he said he could only issue me a permit on that would be valid to the day of my driving test, and he had to book a driving test. He could book me a test for October 7th (ack). Fortunately, I had the wherewithal to ask to speak to the supervisor.

    You see, the agent wasn’t listening to my story – he wasn’t able to deal with exceptions – he could only process things based upon the rules that he knew. I figured that if I spoke to the supervisor, I could come up with a better strategy for how to handle my specific situation.

    The supervisor was able to listen to my story, appreciate the issue at hand, and provide me with the information I need. I can drive in California under my existing Ontario driver’s license (as long as that is valid – so mental note – must renew when we are in Canada next, as it expires Feb 2015). Since my temporary California permit expires on Monday, the supervisor was able to issue me with a new permit that doesn’t expire until 1-year after my written test (July 22, 2015).

    So now, I have until July 2015 to book my California driving test. The manager could totally appreciate the complexity of medical treatment and how that affected my ability to do the driving test. She just confirmed that I don’t drive when I don’t feel that I am mentally able to, but also appreciated the added stress of doing a driver’s test and how that might not be feasible at the moment. I was concerned about the legalities and insurance – she made an interesting comment that it isn’t relevant if I don’t get pulled over, which I found amusing. So now I can comfortably wait until after surgery to do my California driving test – or I can choose to get it done after the cognitive effects of taxol have worn off.

    Now, I must get back to one of the other 8000 things I feel like I need to do today!

  • Another reflection on chemo brain

    [Free Webinar Wednesday, Sept 17, 9am PDT, noon EDT on chemo brain – http://www.lbbc.org/Events/2014-09-17-Chemobrain]

    A great blog post by Anne Boyer crossed my twitter stream today. In it she talks about her experience with chemo brain after her first cycle of AC chemo. I encourage you to read her post before continuing with this one, as she does such a great job describing how chemo brain manifests itself in her.

    I was lucky. I didn’t have clear indicators of chemo brain during AC chemo – at least not until the last dose, at which time the mouth sores made everything else irrelevant! What I did have was an inability to multi-task or concentrate (if Scott played any music, I became unable to type, write, or think). My inability to multi-task began before the chemo – as I had a hard time concentrating immediately after diagnosis (for that I blame stress and anxiety). However, I noticed during AC chemo that driving took a lot more energy. I could still do it, but to pay attention to so many things at once was exhausting. As the chemo progressed, I found myself thankful for the disabled permit that allows me to use a close parking spot at the grocery store. The cognitive effort associated with finding a parking spot would have made running errands impossible. I may not physically need it from a strength perspective, but I definitely physically need it from a cognitive perspective.

    But as I ventured into the T-chemo regime, the cognitive numbness became more pronounced (actually my cognitive abilities are sharper for the first two days and they then decline rather rapidly). I tried to blog about it, which in hindsight is rather remarkable. When I think about the experience and read about what I wrote, and then read Anne’s description of the effects of Adriamycin on the brain, I find myself wondering what are the effects of Paclitaxol on the brain? And what long-term effects of adriamycin wilI I discover (or not discover as I will have forgotten what I used to be able to do – a blessing I suppose). Anne writes:

    MRIs of other women with breast cancer suggest damage to the visual cortex, “significantly reduced activation of the left middle dorsolateral prefrontal cortex and premotor cortex,” and “ significantly reduced left caudal lateral prefrontal cortex activation, increased perseverative errors, and reduced processing speed.”  Women complain that they lose the ability to read, to recall words, to speak fluently, to make decisions, and to remember.

    One of the things that I didn’t mention in the cognitive numbness post is my difficulty in finding my words. I go to describe something and I’m not able to get the words out. I find myself pausing while I talk (or at least I feel like I’m pausing while I talk). The flow of my language isn’t the same – it has somehow been interrupted. This is one area where I hope that blogging is helping me. It gives me reason to practice using my words. With each blog post I am ‘exercising’ the parts of my brain that I use to analyze problems, and describe them. This mental exercise may prove to be just as valuable to my recovery as the physical exercise I do.

    I cannot help but be offended that these side effects are not mentioned – or at least not talked about in any detail. There was a brief mention in our “Introduction to Chemotherapy” workshop that chemo brain was a potential side effect, and that it was a real thing, and that it was being studied – but that is it. I find it offensive that the side effect has been understudied because women’s description of the symptoms have been dismissed. But also, this side effect is especially scary for me – an academic. When I’m done this treatment, will I still be able to do the work that I do? I have a new found respect for my friend who started her PhD immediately after her cancer treatment. She negotiated PhD courses while under the fog of chemo brain while negotiating life in a new city. All I can say is Wow.

    Another area that I haven’t been able to contemplate since chemo is reading academic articles. I don’t know what that barrier is. It may just be a mental block not related at all to chemo – is might just be that my body wants to take a break from academic work and it is exerting a resistance to reading academic articles. I want to be more knowledgable in certain areas, but I don’t seem to be as capable at search for the right articles, but I also don’t seem to be motivated to read articles. So, I fill my ‘high functioning cognitive days’ with busy work – I get some contract stuff done, I catch up on my emails, I write lots of blog posts – but I don’t read academic articles. I keep hoping that will change soon. I have a few starting to pile up in my ‘to read’ list … I just need the cognitive presents and also the motivation to make that leap – but it just isn’t there yet.

    So for now, I shall keep up my ‘exercise’ and try to write regularly – either here or on my other blog. I can only hope that my words continue to make sense and continue to demonstrate some level of cognitive competence.

     

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