I’ve got no eyelashes. Not a single one. And my eyebrows remind me of those scraggly hairs my adolescent sons would so proudly sport on their upper lip–which I referred to (and not kindly) as a pornstache.
I also noticed yesterday that the sides of my head are looking a little thread-bare. Like a newborn, my soft fuzz rubs off on my pillow when I’m sleeping.
So, it’s gotta go. I’ll be shaving my head after breakfast because when it comes to hair, I am all or nothing.
It is a tad disappointing–I was pretty jazzed about the new growth. However, with the last two cycles three weeks apart, I am experiencing the side effects of treatment yet again.
My first four days post infusion I was butt-kicked. Zero energy. The mouth sores are back as well, albeit a milder version than before.
Of greater note, I’ve noticed a familiar wheeze in my left lobe. Side effects plus efficacy is an acceptable trade-off. However, there is absolutely no point in going through this shit if my cancer’s not taking a similar beating.
I will be scanned on the 15th which shall confirm or deny my suppositions. Preemptively, I have alerted my oncologist and gone so far as to suggest that if there is not an obvious next step, a break might be in order.
When I look back over the past seven months, it as if I have been trying to get somewhere in a leaky canoe. In between paddling, I’ve been frantically bailing. The good news is, I’m still afloat. And should all else fail, well, I’ll jump overboard and swim to shore.
Every once in a while I google myself, just to see what’s out there. When I do so, popular searches appear at the bottom of my browser page and invariably one of them is Linnea Olson obituary.
Once upon a time it freaked me out, but no longer. In my community it is entirely valid. In fact, when Facebook alerts me that it is someone’s birthday, I go to their home page. I am checking to see if they are alive before wishing them a Happy Day.
BD (before diagnosis), I would read the obituaries faithfully. If someone was younger than me, my heart would catch. A premature passing felt both tragic and somewhat ominous.
Now, if someone has died and the cause is cancer–minus any reference as to what type–I presume it is lung. That is because lung cancer is still saddled with an assumption of culpability. We call that stigma.
As for my own mortality, I suppose you could describe me as comfortable. Not willing, and certainly in no hurry. However, as death has been my familiar for so very long now, there is inherent ease in our relationship.
In some fucked up way, this is advantageous. I do not worry about dying. It is life that keeps me awake at night.
Beautiful, impossible, difficult. Never, ever to be taken for granted.
I don’t think like other people do. I know this because those other people have told me so.
As a child, I certainly did not consider this a virtue. Shy, socially awkward, and not at all self assured, I was only too cognizant of my square pegged-ness.
The remarkable thing is, I grew into myself. Just like my outsized feet–which provided a hint of the height I would eventually attain–I am now more than comfortable in my own skin.
In fact, I like being me. A lot.
I believe this is because I own it–this me-ness. Or, as I said to my daughter yesterday, ‘Love the one you’re with. Yourself.’
There is no question that I am still weird, if quietly so. But I am also extraordinarily self confident, which I define as understanding both one’s strengths but also weaknesses.
I am also really good at passing–I fly that freak flag low. And one of my super powers is I really don’t give a fuck as to whether or not someone likes me.
Now if I were antisocial, that might be an issue. However, as I love people, most of them love me back. The perfect antidote to no fucks given. But I also don’t waste time trying to figure out how to fit into someone else’s agenda. This is both freeing but also means that I come across as genuine–not a bad thing.
This life of mine is imperfect and in the best of times, a bit of a mess. However, like some well worn and beloved sweater, it just feels right. Holes and all.
As universally difficult as 2020 has been, 2019 was no peach.
It was not something I shared for political reasons. Not those politics, the personal kind.
After six years of residing in a live/work space located in an artist’s community, my landlords decided not to renew my lease. Seems they didn’t like me much, or at least the fact that I was quite outspoken per various ongoing issues (imagine that). Initially I was told I had two months to vacate, but if you recall, I had a trip to Italy planned and it was simply not possible. Once I threatened legal action my lease was extended for two more months.
Moving meant not only my household items, but also my entire vintage clothing stock as well as art studio. And of course I was experiencing progression. Sucked, sucked, and sucked some more. But I got it done (with a little help from my friends).
The apartment I moved into was charming and located within a few blocks of a dear friend. It seemed perfect. However I had been there less than a month when I was awakened by a loud argument coming from the apartment above me. Unfortunately it was occupied by none other than my landlord. Awkward. The shouting went on for hours (‘You’re a fucking liar, No, you’re a fucking liar!’) and then something hit the floor. Alarmed, I texted her to see if I should call someone. And my heart sank.
Unfortunately the arguing continued off and on and I began to feel both trapped and unsafe. One night she hosted a drunken karoke party which I posted about on facebook. The next day a friend let me know that an apartment just across the street from her was for rent, and that I needed to go see it that evening.
I loved these landlords (a couple my age) and the location—my friend was literally two minutes away. So I decided that I would break my lease.
All hell broke out after that, as my landlady searched my social media and saw both the facebook post as well as a blog I had written about her Halloween decorations.
Sigh. To say it was ugly is an understatement and I hope I never, ever see her again.
I also learned, not once but twice, that having a terminal illness means diddly squat in certain situations.
In the end, just as I was starting chemo I moved yet again. Household, vintage clothing, studio. It was expensive and incredibly draining. I did not start 2020 in a good place–financially, emotionally, physically.
However, y’all know by now that I am nothing if not resilient.
I am still in the hole (in all respects) but I have made some solid progress.
My new home is safe (although my friend/across the street neighbor moved to Maine once the pandemic started), the vintage clothing business is hanging on by a thread (just don’t want to lose more money) and I have a new studio in an unrefurbished mill in Lawrence. It is grotty, cheap, and huge with the most amazing light. I love it.
It has taken me the past few months–what with the clinical trial et al–to get it completely set up. Today, for the first time in over a year, I painted. And I can’t even begin to explain what a joyful experience that was.
So 2019–bite me. 2020–bring it. You’d be surprised at what I can handle.
Summer, when you leave why must you depart so abruptly?
It was just a couple of weeks ago that I was sweating myself to sleep. This afternoon I crawled into bed with the heating pad turned on high just to get warm.
There is something disconcerting about the sudden change in temperature. It’s as if the season broke up with us, minus any preemptive conversation.
I mean, yes, I did voice my complaints during the last heat wave. Not vociferously, but I was a tad grumpy. The thing is, that was a passing emotion.
Now it’s already getting dark by eight…which will soon be five (damn daylight savings). The truth is I am far more productive when the days feel endless and the temperature is balmy. And the end of al fresco dining is going to put a real damper on my barely there social life.
Is it too late to apologize? If we clap could we have an encore? Or could you just take your time with fall?
I’m drinking a root beer at 9:30 in the morning. Sort of a blueprint for this day.
Last night I skipped dinner but I did enjoy a bottle of rosé. The entire bottle.
Blame it on I was really thirsty but not at all hungry. That and feeling immoderate; wildly so. Caution to the wind.
So there was that.
I’d like to say I woke up refreshed and ready to seize the day. Not so much. But this hangover is not alcohol related.
I’m just tired of having cancer.
Tired of chemo and its attendant side effects. Tired of being broke. Weary of a future that is full of question marks. Burnt out on being a good sport.
If life was a movie this is where I’d turn to the director and say ‘Hey. I’ve been showing up on this set for fifteen years now. My role is a shitty one but I’ve been giving it my all. Day in and day out. Even doing my own stunts. But you know what? I need a break. Find yourself another supporting actor.’
And then I’d head to the nearest pool. Order a cold drink with a paper umbrella, while I read scripts with happily ever after endings and worked on my tan. In between calls from my agent I’d be talking to my financial advisor, planning my retirement.
In reality I’m going to mix up a nice glass of amino acid to deal with mucositis, ignore my burgeoning debt, schedule a new therapy appointment, plan on scans again in two weeks and chemo in three.
Difficult to believe that August is almost over. A friend of mine noted on twitter that the past eight months have felt both interminable and also fleeting. Perhaps it is the disconnect between what we previously considered reality and the space we now exist in–the year that just keeps on giving. And taking.
On Thursday I had my eighth dose of DS1062-a. Cycles seven and eight have been on schedule–three weeks apart. And because of that I am back to dealing with some side effects. My ninth dose will be pushed back by a week or two, which I am totally on board with.
Infusion kind of knocked me on my butt this time. Not day one, where thanks to the additional boost of steroids, I powered on through. I drove myself in at an insanely early hour (check in, 7 am) and didn’t get back home until almost twelve hours later. But I still managed to make myself dinner.
However yesterday morning I hit the wall. Couch surfing and then early to bed and late to rise. And I’m still wiped out.
I have never been adept at feeling poorly, as I have no affinity for inaction. Impatience is one of my prevailing qualities. By chance (or not?) my psychic energy is at an all time high right now (plans, big plans); kicking back is not on the roster.
Balance, pacing myself, making certain I don’t bonk are the takeaways in the days post infusion. That and a quiet gratitude that as strange as life now is, I’m here–experiencing it.
I had to be in Boston bright and early yesterday morning for an echocardiogram. The technician noted that this was my 36th echo, and that she thought that was probably a record.
Honey, don’t get me started. I’m in the triple digits for chest CT scans. Forty some brain MRI’s and over sixty abdominal CT scans.
This is why I am once again noncompliant as I partake in my fourth first in human trial: after the first two CT’s, I have refused additional abdominal scans.
Trials are a necessary way of life for many of us with advanced cancer. But never forget that this is a codependent relationship; trials also require people like me. Emphasis on person.
I am, first and foremost, a human being. One who shall continue fighting not only for my life, but for my personal rights. And for yours as well.
Medical research cannot move forward without the consented participation of so called ‘volunteers’ such as myself. As I am in this for the long haul, I will not agree to onerous demands that put my already compromised health at greater risk.
I urge you to do the same. Question the necessity of tests that are not clinically indicated. Remind sponsors that you are more than your tissue. Stand up for yourself in a trial just as you would if you were a patient rather than a participant. Challenge the medical research establishment to make good on the aspirational ‘patients as partners.’
It is up to us to initiate change because we have the most at stake (literal skin in the game). We cannot afford to be complacent. And if you think about it, there is nothing to fear but cancer itself. Seriously. Question the unequal power dynamic and the status quo.
To do so does not indicate that you are anti research. In fact, I would posit that it means quite the opposite. You wish to be in this relationship but you also desire that it be healthy and productive for all involved. Demand respect. And always remember, assent is not your only option. It’s ok to say no, and better yet, to suggest an alternative.
Less passive participation is not only good for the individual, it will ultimately benefit research as a whole. So don’t hesitate to speak up. Speak out. Advocate for yourself but also for a truer alliance. An actual partnership.
I think (and if I were speaking my cadence would get real slow right now…) one of the most difficult adjustments as part and parcel of this pandemic is me.
I am simply not accustomed to this much alone time. It’s ok, as in, I can do it. But sometimes it fucking sucks.
If I cook, or clean, there’s nobody who’s going to care but me. Same if I choose to not cook or clean.
On the one hand, that’s kinda nice; in a cut myself some slack sorta way. But then again, it gets old. Really fast.
I suppose that’s because I’m not out to entertain/impress/interact with myself. Nope. It’s the difference between masturbation and making love. Quite likely the same outcome. But…that which is shared is just so much better. More memorable, more meaningful, more multidimensional.
We humans are social animals. And this pandemic is messing with that big time.
Once again, I can do this. But damn–I look forward to the day when we can once again just fall into one another’s arms. It’s going to be a hug for the ages.