Category Archives: Attitude

A new day

I went to bed early last night because I was feeling depressed. Sleeping is generally one of the least harmful activities one can engage in while under the influence of overbearing sadness.

Depression is a funny thing. Never a welcome guest, it arrives unannounced, moves on in like it owns the place, and then proceeds to do whatever the hell it wants, including but not limited to, absolutely trashing everything.

Oy. And never a clue as to when it might decide to pick up and leave.

Well, I woke up on the same side of the bed as usual this morning and yet…something was different. By the time I got home from walking Lily and Kumo I realized that I was in a good mood.

Yeah. That was more like it.

Suddenly everything that felt like an overwhelming burden/impossiblity yesterday now looked a whole heck of a lot more like an opportunity today.

I got on my laptop and started cruising not just the classifieds but also websites for grants and residencies for artists and writers both. And as I did, I started to feel a wind in my sail. I can do this I said, and unlike yesterday, I wasn’t talking myself into anything. Nope. This was true affirmation, the can-do that is my usual MO. I am an overcomer. It’s not for nothing that ‘Adversity Expert’ is one of my tag lines on my current curriculum vitae.

Nope. Challenges are something I eat for breakfast. So let’s get back on track. 😉

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting. It would appear that I am going to live. Appear being the supposition here, as one can never be too sure. However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.

Bounce

I don’t do things halfway and when I go low, I go low. Take no prisoners, lethal sort of low.

My face couldn’t couldn’t get out of the way soon enough and so I made a minor mess of it. If you’ve never picked your skin you wouldn’t understand, but if you have, you know. Damned if you do, but in some sick way, self damage is an amazing way to relieve stress. However, just like alcohol, it tends to make things worse the following day.

That said, my mood is on the upswing. Sometimes when you hit bottom you bounce. I plan to take that momentum to propel me forward into some healthier activities. Writing (I’m on a roll), working on my health insurance, going to the gym and yes, painting.

It’s been a long time since I’ve held a brush but my easel beckons. And getting my art on might just be the perfect antidote to much of what ails me.

That, and the always amazing outpouring of love and support that a post brings–both here and on Facebook. Thank you. Know that every message goes straight to my heart in the best of all ways and that as alone as I feel at times, I’m really not. Because I’ve got all of you. ❤

Deepest Indigo

IMG_2826

Depression is having its way with me.

Yesterday I took myself to Five Guys for lunch. A small cheeseburger, fries and a chocolate malted. Not so bad, as I am working out again.

But then dinner rolled around and so did my gloom, just like a bank of fog. I started with a glass of white wine (that bottle was staring at me so I just decided to kill it). Some black licorice. Five olives. A beer and a banana. Cereal with goat milk kefir and frozen blueberries. My repast all over the place, just like my mood.

I feel as if my schtick is strength and positivity. For the curriculum vitae I am putting together I have Adversity Expert as one of my skills (given my lack of actual substance, I am taking some creative license with my CV). And honestly, I feel as if I am letting some of you down by so openly sharing my current depression.

However, in the name of keeping things real, this is part of it. Any one of the stressors in my life (emotional, financial, physical) is enormous and when you add them all together, it is, on a good day, extremely challenging. And on the bad days–overwhelming.

What I am describing is OTSD–ongoing traumatic stress disorder.

Yes, I am unusually resilient. However, almost thirteen and 1/2 years of dealing with this shit has taken its toll. Last night I managed to waken myself from a nightmare because (and I distinctly recall saying this to myself) ‘I don’t want to see where this is going.’

If only it were so easy to walk away while awake.

So please bear with me as I move through this tough place. As my Granny B was fond of saying, ‘this too shall pass.’ And so it shall.

The lung cancer blues

I was a miserable child. As in, I was miserable; a good deal of the time.

As a ward of my parents, I felt a good many things to be out of my control. However, with careful observation it became clear to me that I was in charge of my personal happiness. And I set about making certain that my own disposition became–through much effort–a sunny one.

This has served me well. Certainly, it has made me more likable but it has also impacted my outlook on everything.

Even cancer. Yep, when I was first diagnosed I look at my odds (not very good) and decided that it was going to be hard, but that I could do this. As in, I had the skill set (that sunny disposition being part of it) to give this a go.

And so I have. But of course, I never could have guessed that I’d be at this surviving thing for such an extended period.

It’s a blessing. And a curse.

There was a sweet little op ed in the NYT’s today about the good in taking things for granted. Sadly, that is a luxury well beyond my reach; an innocence lost long ago.

No, my life is fraught; every frigging moment. Not by choice, but rather circumstance.

Thirteen, going on fourteen years of living with a disease such as lung cancer. For the bulk of that time, well over a decade, I have also lived with the knowledge that my cancer was terminal.

My cancer has remained stable for an extended period. Somnolent, resting, biding its time. I feel good/strong. Sometimes I even pretend that I can let down my guard–just assume I’ll be sticking around. Those are the good days.

But then it hits me. All of it. Like a ton of bricks or a platinum doublet. I am alive but alone with an uncertain future on every front. Grateful and terrified all at the same time. Sad and sometimes angry too. Anxious about my friends because even if cancer’s not breathing down my neck, it’s breathing down theirs.

I was right; this is hard. Really hard.

Baller

Let me start by saying my last scans showed continuing stability. Fifty (50!) months and counting; thank you lorlatinib.

And then, a salient detail per those last scans.

I walked out on my brain MRI.

Yessiree bob. Alice and I had talked about the fact that given my persistent lack of brain mets, MRI’s of my brain every three months (mandated by the protocol of the clinical trial) were not clinically indicated. And that it might be more appropriate to get them (yea!) annually.

I hate brain MRI’s. Yep. I’d rather have twenty needle sticks in a row. The percussive and excessively loud noise of an MRI makes me hyper anxious. As I drive to scans by myself, I cannot medicate for anxiety, and so I simply ask them to stuff as much wadding in around my ears as is possible.

To date, I have had 50 (FIFTY) brain MRI’s (hold the presses—I need to get myself up to the records department to check this #. Patient Gateway is a cluster fuck and I’m not sure my tally is accurate. In the meantime, know that it has been a lot.) Wrap your mind around that number in a slightly different context. Since 12/22/16, it has been known that I have gadolinium deposits embedded in the tissue of my brain; secondary to intravaneous contrast. Although it is unknown if I shall suffer side effects secondary to gadolinium deposition, it is concerning and I have been forgoing contrast for two and one half years now.

When I showed up for my scans last Thursday, I was scheduled for a brain MRI in addition to the chest CT (I am non-compliant per the abdominal CT scans, with 44 of them below the belt to date). As I lay in the CT scan I had this little conversation with myself. It went sort of like this: ‘Would I rather be sitting in the MRI machine or in my car, with the radio cranking?’ Then of course the guilt set in. Lorlatinib is months away from FDA approval. If I walked out on my MRI could my non-compliance throw a snag in the trial? Should I simply take one for the team?’

In truth I’d been taking one for the team for a decade now. And, if my walking out today truly screwed things up, I could always get an MRI at a later date.

When I told the technician that I would be skipping my MRI she warned me that patients are sometimes kicked out of trials for this sort of thing. ‘Well, then wish me luck’ I said.

I walked out to my car, put the key in the ignition, and drove north. Balls out, y’all. This girl’s gonna live and although that’s a big YES it sometimes requires just saying no.

Something’s not right here

 

I’ll be going along going along and then every once in a while I get this sense; the world has lost its goddamn mind.

To wit. I ordered some Tickled Pink Pickles (delicious, you ought to try them) from Walmart, way back in April. I was to pick them up at a local store and after being notified they were ready, I got a second notice that they were out of stock. Fine. Weeks passed and I forgot about the pickles.

Until yesterday, when I received a notice from Walmart that my order was in. Stranger yet, 21 minutes later I received a second notice thanking me for picking up my order.

Not me. Not my pickles.

It took too much of my time to find the number for Walmart Customer Service (thank you google) and then to explain to the person on the other end of the line the intricacies of this situation. The four month lag between order and delivery, the impossibility that it was actually I who picked up the pickles (‘They just want them back’ she said). It really shouldn’t be this hard.

And then last night an email from the person I share a storage unit with, thanking me for paying my rent but also reminding me that our rent had risen again and thus I owed her another five dollars (this is a loosey goosey arrangement). Well, as this same scenario had happened a few months ago and rent hikes are per the calendar year, I inquired further. She sent along a copy of the rent notice showing that the price for the unit had risen from $176 to $179 a month. Huh? I messaged her back saying ‘So it went up $3 and you raised mine $5?’. Yes, she responded. And then wrote a long-assed explanation as to how she had measured the space inside and discovered that I had 1 sq ft more than she did. And so, just to make things right, she had, without discussion, been arbitrarily hiking my rent while also blaming the landlord: ‘This kind of sucks the rent is going up. Your share will be 85. Sorry about this but I have no control.’ Uh, yeah.

Oh, the humanity.

Sometimes it’s funny. Other times a little bit funny but sad too. But then it can just be sad, like when I open the New York Times and read stories such as this: TRUMP ADMINISTRATION UNVEILS ITS PLAN TO RELAX CAR POLLUTION RULES. That can’t be right, can it?

It’s not. And it would be easy to say we have no control and/or that it’s too hard to fight back. But we must. We share this planet and if we are complacent, we are complicit.

Never ever be afraid to stand up for what’s right even if it’s a small thing (pickles). Deciding not to sweat the seemingly minor transgressions can be a slippery slope. Lately I’ve noticed that when something is priced at, say, 1.99, the merchant automatically keeps the penny. It may seem like nothing but…it’s not. A penny is a something and if I want to give it to someone, that’s my choice. But they shouldn’t automatically assume that it is theirs. Speak up, speak out, and don’t be afraid to ask for and sometimes even demand change–double entendre intended.

Those pennies add up.