Another plateful

A week ago yesterday, I fell down the stairs of my house.  My tailbone’s quite sore but nothing’s broken.  In that week I had a chair lift installed, did the second half of my third chemo cycle (white cells too low to have it on Day 8 so I received it on Day 15 instead), my father was admitted to the hospital due to a collapsed lung (being rushed to ER from his opthalmology appointment), and had two absolutely opposite visiting experiences with my brother.  Today my brother was moved out of the Critical Care Unit to a regular room, so it’s a new game in terms of his recovery and discharge.  As for Dad, his lung doesn’t seem to be reinflating, so we’ll see what happens with that.

I’m feeling breathless and wheezy, I’m guessing due to hemoglobin counts hitting bottom.  They seemed low at chemo time, so hopefully that’s all it is.  Two weeks ago I was cheered by taking a 1.5 mile walk without undue effort, and it seemed the pain meds were not as frequently needed.  Then the fall happened and suddenly I feel pretty beat up again.  I was marveling at how much better I felt going into Cycle 3… perhaps a bit too optimistic, but with coughing at an all-time low, it appeared chemo + Tarceva was actually gaining ground.  I’m still hopeful it is and some meaningful activities are on the horizon.

I would’ve like to see Coachella (Music Festival) this year.  Blur and the Stone Roses were headlining, along with a slew of bands I like, but it’s just another fantasy.  Sadly, I also missed seeing The Specials in mid-March, due to feeling craptastic.  Having just finished reading Steve Jobs’ biography, I find it peculiar that no mention is made of Steve Wozniak’s equally intense interest in music, which spawned the US Festivals (’82, ’83).  I guess it’s not about Woz, but I’d venture to say that his love of music was at least as far-reaching as Jobs’.

I wonder if the Boston Marathon bombings created any security anxieties at Coachella.  So sad that large-scale events can no longer be attended with the  naive unawareness of decades past.

Anyway… It’s a pretty day to watch the roses bloom and Roadrunners prance about.  I wish I had more energy, but at least the side effects of last year’s treatment have resolved (scalp rash, raw feet soles, finger fissures, crusty nose, terrible skin rashes…).  So, onward.  Two months to the 7th anniversary of my stage IV diagnosis.  I hope I make it and can celebrate in a memorable way.

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Death, Love, Sorrow, Guilt

Daybreak is upon us.  Sleep eludes me, though I need it badly.  There’s chemo this morning, but more importantly… my brother is dying.  He was admitted on the eve of his birthday.  I will forever regret not going to the hospital on his birthday, the last day he was effectively alert.  He survived surgery last night, which I hope removes some of his pain, even if it casts more uncertainty into a dire situation.  His kidneys are shot, and his heart is only functioning at 10%.  The surgery was to remove infection that was sure to kill him.  Even if that’s a success, how can he go on?

One of the deepest and most complex love of one’s lives can be that of a sibling.  I imagine that most who know him experience the divide of the person we knew and loved, before the beast of mental illness stole his mind and body and replaced it with an alien.  Occasionally we would see a glimmer of the real person we cherish, but in the past two decades, more often than not, we tried to cope with what remained.  My mother has been steadfast and devoted in her care of him.  At her advanced age, it’s been a miracle she’s able to visit him, bring him food, take him around, put up with his erratic and abusive behavior.  That is the power of love, to know and believe that underneath it all is the wonderful, brilliant person, suppressed by illness – and have faith that whatever kindness and love one shows somehow brings comfort and joy to that core being, even for just a second.

I am racked with a storm of emotion and pain.  My brother and I were not close until high school/college years, at which point we connected on pretty much every level.  I’ve often wanted to write about him – he was brilliant and colorful, full of promise, vulnerable and naive, a true Romantic.  Someone he knew at Berkeley said to me years ago, “The more intelligent the person, the more fragile the psyche.”  We used to chuckle and wonder at all the (once-brilliant) grad students who had gone off the deep end and now wandered the streets of Berkeley, shouting things (“Rare!”), digging in trash cans, sleeping in People’s Park.  This friend’s argument about my brother being a Romantic in the pure sense of the word was enlightened, and yet I failed to get past it and realize the very real disease eating his fragile psyche.  Each thought brings with it fresh and unbearable sorrow…

Why am I using past tense?  I think he’s still alive.  As far as I know he’s breathing, on life support.  We saw him yesterday, intubated, before surgery.  I wondered if I should take a picture, and decided this was not how I wanted anyone to remember him.  If this was the last time I saw him alive, the image was burned into memory forever.  I have many good memories – I choose to memorialize those.

Last night my sister got drunk, my husband joined her in light conversation, and I was left to research cremation services.  At 1am they were talking loudly about places to ride ATVs.  I guess this is how things will go.

I’m not the kind of person who’s able to maintain lightheartedness in the face of death – especially of someone so dear to me.  My ability to detach and be stoic went away when I got cancer.  I believe I truly understand the meaning of Life is precious.  And yet I’m beating myself up over all the time I didn’t bring my brother love and comfort, all the time that passed between us when I didn’t communicate with him.  And how my and my family’s ignorance allowed his mental illness to go undiagnosed for so long that once it finally happened, there was little we could do to control it.  Maybe there’s not much that can be done anyway.  I’m told that’s the case and I shouldn’t dwell.  But the mind goes to these things, and sorrow makes the guilt more intense.

I’ve been suffering for a long time, worrying about my brother, my mother, my father.  I think – through my own illness, at least I’ve had some comfort.  I bristle at the insensitivity of those closest to me that they don’t try to give me greater comfort under the circumstances, that they are so clueless and detached about my condition.  The minute I show any signs of recovery, people expect an immediate return to the status quo… I complain, but I am reminded about the long years of poverty and deprivation and utter discomfort that my brother has endured due to mental illness, and I deserve to be flogged for all my pettiness.  I want to flog everyone around me who complains about all their ridiculous pettiness as well.  I want to scream, and cry, and point out how much comfort everyone has compared to my brother.  While we complain about the discomfort he has brought upon us, all I can think of is how much he deserves some small amount of comfort, joy, beauty, intellectual stimulation – which was so important to him, even through his mental illness.  I just want him to get some real rest, to be free of pain, suffering, misery.  Loneliness.  He has been lonely for so long, and alone.  For my part, I feel like I’ve not done everything I could to alleviate that.  My mother, bless her heart, has been his angel and saving grace.  Her job has been thankless, and we don’t deserve her.  If there ever was a saint, it would be this amazing woman.  So here the two of them are bound up together in suffering and survival.

Years ago she came through a protracted and severe illness which she barely survived.  Like my brother, she stubbornly refused to get medical care until it was almost too late.  The illness made her hair white overnight.  Through her tears and despair, she told me she was tired and didn’t want to go on living, but she wanted to survive so she could help my brother as long as possible.  She used to say no one loved my brother more than me, but compared to the depth and strength of her love and loyalty, mine is but a flicker.

I am exhausted, and heartbroken.  I just want my brother to be restored to the incandescent being he was, to wholeness.  If that means death, so be it.  I don’t know if death just turns us back to dirt, or if our souls truly do transcend to some collective unconscious or another dimension or whatever.  I just want whatever will give my brother comfort.