Tag Archives: coping with cancer

Hold me

I am at a tough place. Physically, financially, emotionally.

Moving again combined with chemotherapy plus lorlatinib has been more difficult than I imagined. I am exhausted and raw–figuratively and literally.

In December my five years of alimony came to an end. The previously draconian divorce laws in NH have been revised, and were I to be divorced now, I would have received alimony for up to one half the length of my marriage. I asked for an extension which was summarily denied (no surprise). I don’t qualify for disability (not enough work credits–being a stay at home mom bit me in the ass–hard) so I am going to have to have to rely on my retirement fund. It is all very stressful and yet small potatoes compared to my health issues.

Breathing. So simple and yet not. Thus far no indication that chemotherapy is making a positive difference. Which of course makes the abundant side effects less tolerable as well. And then there is the mind fuck of pushing ahead with the belief that this is all for a reason while also understanding that in fact I may just be making myself sicker with no resultant benefit.

On Monday I was given the option of forgoing chemo. My response was ‘hit me.’ I need to believe that I am accomplishing something.

There is also the reality that I am essentially going this alone. That the dog still needs to be walked and I need to eat, neither of which is going to happen magically.

I have no doubt I shall get through this. It is what I do. But it also occurred to me (again) today that perhaps the worst part of being alone is having no one at my side. That human touch and warmth would do far more toward making me feel whole than a meal or a walk for my dog (things I can do myself).

Well. I am not one to let conventionality stand in the way. If you’re a close friend of mine and within driving distance, don’t be surprised if I hit you up for a sleepover. Nothing fancy. Not sexual.

Just hold me.

xo

Losing it

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 🙂