Category: active treatment

So I’ve survived one more chemo day … I type this as the monitor beeps saying I’m done … with any luck this will be my last …

Had some fun taking pictures by my tree before the infusion.

I won’t know until next Monday (the 13 – which also happens to be Canadian Thanksgiving) – what is happening with my chemo. I have an MRI on Thursday night and various doctors appointments on Monday. If the tumors are gone (or small enough), then we’ll stop chemo and get ready for surgery. If the tumors are still present on the MRI – or haven’t shrunk as much as we had hoped – then I’ll continue with chemo for another six weeks (although I may see if I can take a week off in order to give my blood counts a fighting chance of rebounding). My  red blood counts (RGB/hematocrit) are higher than they were last week (still low, but better). My white counts are still trending downwards.

So another week of appointments. I’m going to try to take it easy this week – listening to my body – and doing whatever I feel like doing. Pretty much like I have been doing since starting chemo with a little more emphasis on resting.

One side effect that I’m now having is pain under my nails on my thumbs and first two fingers. It isn’t painful when I do nothing, but when I use my fingers it hurts (even when typing I’m aware of the pain). The finger tips also are sensitive to the heat – in particular the heat of the gas burners on the stove. So I’m going to try to shift to meals made in the oven. If anyone has any recommendations for favorite casseroles, please post recipes or links in the comments. Thanks.

On Friday, I gave myself permission to stop working while I’m on Taxol. I have been trying to sneak in small amounts of contract work, but I just haven’t been able to get anything done. I’ve had the same task on my to do list week after week. It isn’t a big task, nor a lot of work, but it requires some concentration – and I just don’t have that right now. So, on Friday, I gave myself permission to let it go.

I have to say, it is a lot easier to put it on hold with the thought that I’ll have one or two more treatments – a lot easier than thinking 6 or 7 more treatments.

I got word from my oncologist – the current plan is that I do chemo on Monday (dependent on my blood counts). I have an MRI booked for Thursday evening. I see my oncologist again on Monday morning (Oct 13 – Canadian Thanksgiving). I also see both my surgeons that day. Depending on what the MRI says, we will either continue with chemo or move on to surgery. I’m leaning towards surgery right night, largely because the chemo is taking away all my energy. I’m tired of it all – ready to move on to the next step.

So, I’ve given myself permission to not work while on Taxol. I need to let that pressure go. I’ve also decided that I shall not be driving while on Taxol. Two weeks ago I was good on Tuesday and part of Wednesday. This week, I wasn’t good Tuesday afternoon. I do wonder if the issue is related to my low blood counts? In some ways, I hope that is the problem, as it would mean that when my blood counts rebound I’ll get that cognitive processing back.

Today, I’m tired – I’m actually looking forward to the post-chemo steroid boost – that is, the extra energy I get on Monday afternoon, Tuesday, and Wednesday because of the steroids given during chemo.

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!

[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.