Spring and summer were busy, interesting, and difficult. I traveled lengthy distances on three separate occasions. Not an easy task for someone who rarely travels willingly and doesn't travel well. Two of these trips were to tend to others, although they didn’t start out that way.
The first trip took me to Florida, the casino, and the beach, with whom I’ve shared an ongoing love affair for most of my life. The second took me to Netroots Nation; this trip was strictly for me. I needed this trip to heal my broken spirit; didn’t quite work out that way. The third was a trip home to check up on someone I care about deeply; five days that confirmed I’ll only be going back for funerals.
What can I say? Some of us didn’t grow up on Walton Mountain sharing Hallmark moments. We ride out the darkness that seems to consistently follow us the best we can and hold onto the lighter moments with both hands.
Unless one has experienced a mental or emotional disorder firsthand, one can only imagine. Speculation is opinion, possibly based on fact, nothing more. Clinical unipolar depression is crippling and devastating in its morbidity. Life becomes dictated by one’s mood and the mood of most days is consistently black. Imagine living every day like this. Can’t or think you have? Try wrapping your mind around this -
Dr. Kay R. Jamison, Professor of Psychiatry at Johns Hopkins University School of Medicine, herself bipolar, describes depression in her book, An Unquiet Mind: A Memoir of Moods and Madness, far better than I ever could.
Depression is awful beyond words or sounds or images; I would not go through an extended one again. It bleeds relationships through suspicion, lack of confidence and self-respect, the inability to enjoy life, to walk or talk or think normally, the exhaustion, the night terrors, the day terrors. There is nothing good to be said for it except that it gives you the experience of how it must be to be old, to be old and sick, to be slow of mind; to be lacking in grace, polish, and coordination; to be ugly; to have no belief in the possibilities of life, the pleasures of sex, the exquisiteness of music, or the ability to make yourself and others laugh.
Others imply that they know what it is like to be depressed because they have gone through a divorce, lost a job, or broken up with someone. But these experiences carry with them feelings. Depression, instead, is flat, hollow, and unendurable. It is also tiresome. People cannot abide being around you when you are depressed. They might think that they ought to, and they might even try, but you know and they know that you are tedious beyond belief; you’re irritable and paranoid and humorless and lifeless and critical and demanding and no reassurance is ever enough. You’re frightened, and you’re frightening, and you’re "not at all like yourself but will be soon," but you know you won’t.
I’m not writing this for sympathy. I get enough of that, unwanted, because of the cancer, thanks. (And I’m not even terminal.) To some I’m the walking dead, to others, I don’t appear sick enough. So, clue me in - what exactly does cancer look like? I’m doing my best here, folks. I’m writing this to get it out of me and, maybe, it’ll help someone out there in the process.
Balance is difficult. The depressions tie me up. I’m no social butterfly. I don’t talk much because I find myself tripping over my tongue far too often. Plus I’ve got a really dark, very dry sense of humor. Many find this off-putting.
Last fall I began working on a bone crushing depression that’s been slowing debilitating me.
In February, the cancer showed up in my bone marrow.
With my immune system acting as though it wants a life of its own, in March more blood work showed that I also had Epstein-Barr virus. Okay, fun dates are out.
In late April, I thought I’d take a friend up on his allegedly generous offer of healing and rest at the beach. I was grateful to be able to see the shore once again, but as so often with this particular friend, there was an ulterior motive. Isn’t there always with certain "friends"? I was his escort to places he’d wanted to see and things he’d wanted to do, but didn’t want to do alone, newbie to the community that he is. Right up my alley, free spirited, light-hearted sprite that I am. Long story short, the trip was a rub. He had his escort and I visited the beach. We also ended up visiting one of the nearby casinos. My friend wanted to flaunt his means and what it can buy. It was okay. But then, like I said, I’m looking at this through the fog of depression.
We were there two days. The pool was gorgeous, warm, and inviting, complete with a pool side bar; this meant little to me because I don't indulge. Visually though, it added a tropical quality to the already beautiful surroundings. My friend had invited his current lover to meet us there under the guise that he wanted us to meet. Umm . . . right.
I’d wanted to get some sun; I’d taken on a greyish pallor since the whole cancer thing started back in 2001; my complexion matched my mood. Nice. I hoped to look somewhat alive for Netroots Nation in July, so I began working on a bit of a tan. What better place to start than in Florida?
I’m sorry to report than my friend’s companion at that time turned out to be an alcoholic. The telltale signs began to show themselves the day I met him. Let’s just say things got highly dramatic as the late afternoon and evening progressed. The up side occurred, interestingly enough, while I was watching the young woman across the bar bounce her boobs.
Obviously, they were new boobs. Very large and very perky, unlike natural very large breasts which tend to appear heavy. While my friend and his companion were making not-so-subtle innuendo to each other, I was watching this young lady show off her new boobs. She and her small entourage were very pleased with the outcome of her very obviously newly-acquired cosmetic surgery. I watched as one of her male friends slid his hand up from behind, under her arm, gently cupping and squeezing her right breast, nodding his head approvingly. When he was finished with his critique, her female friend, standing in front of her, ran her hand up Ms. New Boobs’ abdomen and she, too, cupped and gently squeezed the right breast. She smiled broadly, nodding in apparent approval as well. "And the vote is in, folks, the new boobs feel real!", I thought to myself. What a relief for Ms. New Boobs, huh? In thanks, Ms. New Boobs bounced her new acquisitions enthusiastically for the attentive, yet small, crowd that had formed around her.
As my friend and his friend continued to flirt, the woman sitting next to me leaned over and asked, "What do you think?" "The girl with the bouncing boobs?", I asked. "Yea." "I think she thinks she knows what she’s doing.", I answered in reply.
We smiled at each other and she introduced herself as Lisa. And we began to talk. She lived in the area and she and her spouse decided to come to gamble for a few hours and thought they’d have a drink. She asked what brought me there and I told her a bit about myself. Sometimes talking to strangers is easier than talking with those the closest to us.
Small world that it is, Lisa’s mother had died from the type of cancer that I’ve got. Her mother was an active woman and a long distance runner as well. She contracted her disease in her early 70s and passed away within three years. "It was like watching the fluid run out of a radiator" is the way Lisa described her mother’s waning energy level. We talked for about 10 more minutes, then exchanged a hug and I excused myself to shower and dress for dinner. As we parted company, Lisa took out her cellphone. "I’m calling my 16 year old daughter. I want to make sure she’s not bouncing her boobs for anyone."
I returned home more tired than when I’d left to find that my dad had been put out of his home. He sounded fragile and beaten. I made arrangements to go home and did so last month. I was sad, my spirit at the point of breaking.
My next trip took me, in July, to Netroots Nation. I sorely needed to reconnect with the wonderful energy I’d found at YK07. I needed something to thwart this darkening depression and replenish my spirit. I was certain Netroots Nation was just the remedy. I was wrong. While I had a lovely time, reconnected with some friends I’d met at YK07, and met a few people that I greatly admire, the energy was missing. That wonderful, positive energy that was so alive and palpable was missing for me at this year’s event.
Without saying more than is necessary, I also managed to humiliate myself in my own personal way while there. And I suspect I may have unintentionally embarrassed someone else in the process. While it would probably not mean much to anyone else if it’d happened to them, it’s a less than stellar moment for me and one that I look back at with tremendous regret. My one word synopsis? Fuck.
Moving on, last month I went home to check on my dad. I can report that he’s doing much better than he was back in April. He’s faring very well for a man who’s never lived in an apartment, in fact. I’m grateful and relieved. I visited with two relatives aside from my father and returned with the confirmation that there are no further reasons I should ever go back. Aside from funerals, I won’t. Unfortunate considering Netroots Nation is being held there next year. Will I be there? Although I registered early, it’s not looking at all promising.
The up side is that while I was there, I won a pair of tickets to the Steeler game (exhibition) that was played on 8/28. I had no use for them, so I gave them to a guy I didn’t know. I'd never seen this person before in my life. He was pleased. Good karma for me, right? (Sorry Ellicatt, if I’d have been thinking clearly, I would’ve offered them to you first.)
On 8/29, I visited my friends at the cancer center again. I went alone this time. What can I say? Circumstances are what they are.
In any case, my lymphocytes are in normal range again. Good news, right? Well, if I were a glass-half-full type person, I’d say, "Yes!" But I’m not. I’m me. I tend not to get too happy or too sad about this stuff. I know cancer well enough to know that it doesn’t follow any rules, set patterns, or logic. It does what it wants when it wants. After all, last September my lymphocytes were in the high-normal range and by February the malignancy went from only appearing in my blood to showing up in my bone marrow too.
I did get some interesting and somewhat good news from The Leukemia & Lymphoma Society this past week, though. Seems that I’m eligible to collect some financial aid to help defray my travel expenses, co-pays, and deductibles. Being lower middle class played a part in this. I’ve got a bit of paperwork to fill out, but sincere thanks to The Leukemia & Lymphoma Society.
Also, there’s a support group for Non-Hodgkin’s Lymphoma sort of close-by. I have to see just how close/far that "sort of" is. They meet once a month in the evening, so if it’s close enough to the train station, I’ll be able to go. If not, I won’t.
Another interesting piece of good news is that:
The five-year relative survival rate for NHL patients rose from 48 percent in 1975 to 64 percent in 2003.
Some weird news is that, when the time comes, should I choose to undergo treatment, most of the treatments for my kind of malignancy come with a common side effect of convulsions. Not appealing, I can tell you.
Also, one of the available treatments is Arsenic Trioxide. You gotta be kidding me. What is this, an Addams Family episode?
This is where I’m at - aside from the whole depression thing. I’m in the process of trying to work this out too. Supposedly there are newer meds out there. Ones that don’t have such severe, undesirable side effects. Ones than won’t exacerbate the situation and make the depression worse, ones than won’t encourage the belief that swallowing over 200 pills with an anti-nauseant chaser is the best possible solution. We’ll see. I’m discussing this with my psychologist. In two weeks I’ll bounce it off of my psychiatrist. ©