Tripping on Taxol Terror (Or, finding my way off the pre-chemo ledge while everyone else is road-tripping)

First of all, can I just whine a little bit and say that while there is no good time to deal with cancer, summer is particularly crappy if you have the road-tripping gene like I do. I have spent the past few weeks seeing everyone off on their trips, perusing my own  trip photos from last summer and longing to hit the road myself. (And let me just say how strange it is to look at photos of me from a year ago at this point – is that really me??) Ah…nothing like the 6am post-tent-sleep photo-op. I do long for the feeling that can only be achieved after sleeping outside. Next year.

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For now, I will plan for next year’s trips. All signs are telling me that trips will be possible, which I guess when you put it in perspective, is not something I was really believing just a few short months ago.

Two days ago marked Chemo #5 for me. This meant the first dose of Taxol, which basically snapped me back to the state I was in prior to Chemo #1. The fear with this one was again the unknown – this time about whether or not I was going to fall into the 10% of people who react to this medication, or rather the agent in which it is packed – something about the Yew tree. I am riddled with allergies, and I’ve certainly never met a tree to which I didn’t react. I have allergies across the board – environmental, food, stings, you name it. I have epipens littered all over my house, all with varying long-expired dates stamped on their sides, I will admit. So for me, it was almost a definite. I was obviously going to react to this medication, and I had myself in such a state leading up to this treatment that I’m fairly certain there are friends and family questioning my mental health at this point. I tried getting the drug changed. I thought about hitting the road and just plain old opting out. The fight or flight instinct is a pretty powerful phenomenon. When I shared what was happening in my body (hands and feet freezing cold, filled with the instinct to flee, etc) with one friend of mine, his response was a good one: “Fight is all you got. now do it.” Excellent advice.

Another good friend helped in many ways that day – it takes some pretty bang-on instincts to know that showing up and helping me cook breakfast (with music!) at 7am would be a pretty good way to lead me into this treatment. Happy place found, belly full, sufficiently caffeinated and then subsequently Ativan-ed, I headed in and started what turned out to be a perfectly uneventful but marathon-like chemo session, starting at 8:30 and ending close to 4 in the afternoon. And even with all the Benadryl and Ativan on board, I think I only napped for about 20 minutes. Can I just say thank you to my support system? Five down. Three to go.

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Reeling senseless into the final four (Or, how I’m grieving the loss of my taste buds)

My perfect date, I have always maintained, is a potent cocktail of music, cooking and a good Rioja. This waiting period between chemo #4 and #5 marks a rather poignant loss of my ability to fully enjoy all three.

My senses are so wrapped up in who I am it’s almost funny. I judge people based on their favourite smells and tastes. I cook entirely based on how food smells. I have been guilty of withholding judgement on a person’s whole worth until I have given them a long, inquisitive sniff. I hold on to articles of clothing that smell like people I love far longer than what would be deemed healthy, and flashes of smells can knock me over with emotion. The same can be said for music, which I’m fairly certain is much more commonplace. Music for me is ritualistic, though, and it plays very specific roles during particular activities. My cooking music is particularly sacred, and it didn’t occur to me until yesterday (when I was trying to get as smart as my ‘smart’ tv and played a sample of a song) that I hadn’t played my cooking music in forever, because I haven’t been in that sacred place in my kitchen in what now seems like eons. My senses are off – they are both over and under-whelmed by this chemotherapy business, and I am being therefore being distanced from the activities that I love so much. These are the little things that deserve a moment in the grief that cancer causes. I miss music. I miss the full experience of all of my senses. And while I recognize the value of being somewhat numb in this particular phase of the journey, every muddled bit of my being looks forward to listening to Ana Moura in my kitchen again, and feeling, and hearing, and tasting and smelling it all. It really is the little things. Cue up “Como o Tempo Corre”. Cheers.

Some days are busier than others (Or, how to traumatize your best friend by treating her to a ‘day in my life’)

Yesterday morning my alarm went off at 6am, which is highly unusual for the day after chemotherapy. I had been invited to speak to a group of fundraisers at the Cancer Centre, and being a little nervous, I convinced my best friend, ‘T’,  to come along. She had also been pre-booked to come with me to my tissue expander appointment and then later in the evening to the workshop ‘Look Good, Feel Better’. Booking three different events on the day after chemo was probably pretty ambitious, but having company made it both do-able and fun – although some parts were probably more traumatic for T than others.

The highlights:

I struggled with how to walk into the boardroom at 7:30 am. Wig? Hat? Nothing? I decided that it would be a very appropriate place and time to brave the bald – and I did, for at least a few seconds. I managed to walk into the hospital, through the halls, and into the boardroom and be introduced to a few people before having the hat land firmly on my head for the rest of the presentation. Baby steps, yes? In any case, hat or no hat the talk went well and I am proud to have been invited to speak. Having moral support there was good for keeping me grounded.

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Next appointment wasn’t quite as glamorous, and required a little more ‘sassy’, as T would say. The green wig was the topper for the expansion appointment, which had been put off for weeks and weeks now because of some issues with old incisions. Wasn’t quite expecting to have this be the last visit, but it was, which means that there was about double the amount of saline injected than what I expected. I had invited T. with me, because really – how many chances will she get to witness this sort of procedure? The responses were funny:

‘Sweetie, can you really not feel anything?!’ (This one was kind of shrill, I will admit)

‘Um..are you going to need to go shopping for new bras?!’ (Yay, shopping!)

That presence had all of us laughing through the appointment, which was referred to as kind of ‘sci-fi’ afterwards, and even managed to bring a smile to my face in the middle of the night when I awoke with that intense ‘expander pain’ that winds itself around your back and ribs for a few days after the procedure.

Finally, last night I brought T. along to be part of the ‘Look Good, Feel Better’ workshop, where we were honoured to be in the presence of several other women all dealing with or having dealt with their own trials with cancer. I haven’t put myself in this type of situation yet, and I must say it was really valuable. Seeing the grins on each others’ faces when wigs and scarves got removed and looking around to see others looking for answers to the same questions really made me realize that I’m not as isolated as I think. There were women there who snapped things into perspective pretty quickly for me, telling stories of having to be away from family during treatment and being forced to travel and be far from home for extended periods of time. I cannot imagine how difficult it would be to pair dealing with this illness with being away from my children and my support system. Yet another reason to feel lucky. And helping to model the wigs and hats was fun too – the work that this foundation does is really valuable.

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Four down, four to go. (Or, I’m so happy Taxol is clear – and I promise I won’t wear saran wrap to chemo to match.)

Today marked the half-way point in my chemotherapy. I think, after a conversation with my nurse at chemo today, that the raucous chemo days are leaving, along with the red devil.

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Replacing it will be four sessions of benadryl-infused taxol treatments, which come with their own little devils – risk of allergic reaction being one of them. Benadryl, when taken intravenously, is apparently quite effective at putting one to sleep, and there is no point in fighting that from what I understand. Chemo will be a quieter affair for these next four. Perhaps I will bring one person with me to each, or a few who really like to talk to each other, because I will be bringing a blanket and a good pillow with me.

Two weeks ago I had so much energy that I wanted to do a four-hour hike and picnic to celebrate, and since then have had to come to terms with the fact that four-hour hikes are just not in the cards for me right now – not necessarily because I couldn’t do it, but more because it would have to be perfectly timed to avoid hitting the proverbial wall while in the middle of said hike – my friends are patient, but half-hour power naps mid-hike would be frustrating for even the best of them.

Today, we settled for wearing a little red (some needed props) in celebration of saying goodbye to the red devil, and lunch in my back yard right after chemo. And yes, there were mojitos.

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It’s interesting what happens when you put a big group of people in the same space, and sit back and think about where everyone is coming from and what they’re dealing with. It can actually make you feel incredibly connected, and profoundly touched, because you know damn well everyone has their own demons they’re battling – not necessarily red devils, but devils in the form of their own diagnoses and fears, devils bearing banners saying ‘Kids + career = difficult’, or ‘My marriage is really shitty right now’, or ‘I have to put my dog to sleep tomorrow’, or ‘I just made a really difficult career choice’, or ‘I am tired and I need to support my daughter’, or ‘I am stuck in longing’, or ‘I am worried about my partner’s health’, … the list goes on.

What is amazing, and wonderful, and revealing, and telling is that all of these people come together when it is time to support someone, or celebrate something, and although there are tears, and there is sadness, and there is regret, and there is fear, these are drowned out for an hour or two by laughter, play, drink-mixing, filling of bellies, lots of hand-holding, hugging and (good-natured) harassing, and for just a little bit we are able to forget about our own little devils and live in the here and now. And let me tell you: For the here and now, I am thankful. xo

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