Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.
Sometimes it’s funny, other times it’s frustrating as hell.
All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.
Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.
With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.
It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.
I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).
I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.
I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.
*if I can find it 🙂
oh, how i’d like to be that person! – your volunteer personal assistant! – is California too far? – i’m very good at organizing OTHER people’s stuff! – i’m only so-so at my own – fearing some tense time (reviewing my bank statements) between now and my tax appointment tomorrow, i just re-scheduled for the following day – (thank goodness she had a spot!)
and only thing i can share about losing things is: try to focus on the moment (duh!) when you are dealing with something important (like keys and glasses) – my bad habit? it’s running around with my key-ring in my hands – bad idea! – one of the most important things i have, and how easily it could get dropped in the trash, locked in the trunk, or lost in the laundry basket – i think about that nightmare and try to focus!
anyway, you are doing GREAT – i know how much glasses cost and if you didn’t beat yourself up over that, you’re in GOOD shape! – now, back to my bank statement reviewing ….
Thank you Kristen. I do too many things rather mindlessly–something that was an issue even prior to all the treatment. I’ve lost that ability to retrace my steps, something I was good at before. I am continuing to work on strategies for coping with my deficits though. Good luck with your taxes—I need to get to mine as well.
Dearest Linnea, I would gladly oblige as I am uber organized and a Exec Assistsnt/Personal Assistant by trade. if only I were located near you. 😦 I’ve been following your blog since my mom was diagnosed with lung cancer (adenocarcinoma) 6 years ago. She’d been in remission for a while but that ugly cancer reared its ugly head once again. Her latest treatment isn’t working and we’re waiting to see the next plan of attack. You have been a true inspiration. Rock on!
Trisha, you sound highly qualified and I wish you were closer as well. I’m sorry that your mom is facing progression and I wish her some treatment options—for me, that is the definition of hope.
It must be an astrological thing. I lost my glasses more times than I can count at work yesterday. I still haven’t found my coffee. These things are in the realm of lost socks. They’ll all sitting there enjoying our frustration!
Tracy, that’s pretty funny that we both lost our eyeglasses and coffee as well. Hope you find it soon—I figured I would eventually smell it (cream et al).
Oh if only. If only so many things. I am too far away to be of any practical assistance but I am hugely cheered to know that officialdom reads your blog. Maybe they read the comments too! Dear Officialdom, Please take notice of what Linnea has to say! She is a soldier and a trooper and she is helping us all win this war, for everybody. Let her always have the support and help she needs and deserves!
Thank you Liz. I wish you were closer as well, if only so we could go for a cup of tea.
We’ve had a rule in my house for over a year now (I’m 2 1/2 years into treatment) – no one is allowed to say, “Don’t you remember”. The answer is NO – so why ask?! My pali-doc put my on ritalin which helps me focus at work and stay awake, but by the time I get home all my “good stuff” is sucked right out of me! “Keep on keeping on!” Congrats on 12!
Christine, that is a wise rule. I have heard ritalin is effective but man oh man, I don’t need to add to my pharmacy. You keep on keeping on as well!
Oh my gosh! I am not the only one!! There is so much to deal with. Sick and single sucks! Bills go unpaid…where are those house cleaning angels?! Now, where is my coffee…
(Chris in Wyoming)
Yes. Being single certainly complicates things. But I’m also proud of myself that I cope as well as I do and you must be too.
sound like Miss Lorla Pfiser schpeaking de teluth. I’m simon, my dose went down to 75 and I started to remember Linnea my friend has a flog. no no, vlog, no no no blog!
Hey Simon, nothing wrong with 75!
Do you live in Austin Texas? If so, I would like to help!
🙂, Cindy K.
Cindy, you are so sweet. I have a sister in Austin but I am in Massachusetts. But thank you!