Home

I’m home for a minute. I get to see the Hubby for a day or two, then it’s back to the mine fields. This thing with my brother – epic as it may be – will eventually get resolved.  The key is finding a sympathetic landlord, as his is a most unusual situation. That may take a while, so it’s Plan B, moving stuff into a storage unit. If it were going to be an organized move, with boxes and some sort of command of the situation by the movers, that would be one thing. But I’m looking at motorcycles and scooters, parts, tools, and things un-packed. And of course, my brother’s now ill with pneumonia. He went to the hospital today but wasn’t admitted. I hope the antibiotics will pull him through this episode and at least allow us to get him out.

I can’t believe this is happening while my father spirals downward. If he doesn’t do chemo, I fear he won’t make the end of the year.  He’s not doing well at all, and the stress of caring for my brother is undoubtedly accelerating his demise. His fervent hope was to finish and publish his book before he died, but with everything, I’m afraid I’ll have to finish it for him and get it published.

My mother is up in arms about everything and her illnesses are taking over her body. Yet she refuses to take the time off to see the doctor (mostly because, without me there, she’s the only left to care for both my father and brother).  She’s 76, can’t see very well and therefore doesn’t drive the freeway, and I bet she’s much more ill than she lets on. I hope she doesn’t just drop one day.

My heart breaks every moment, thinking about my parents and brother. I am angry at my sister for not having the commitment that I do towards my family, but she left home at 16 and was always distant (there are exceptions to this, usually when money is involved). She is detached, which serves her well, but the manager in her always has to take credit for whatever minimal effort she makes. Her MO is to throw money at things, so maybe someday that will prove itself the most useful. However, I fear for my brother’s welfare when my parents and I are gone. I fear he’ll be walking the streets.

I’m not trying to save the world. I’d like to make my father’s last days tolerable, peaceful, free of physical pain, at least. It might be time for hospice soon.  I’d like for my mom to spend quality time with him before he goes. I’d like my brother to be taken care of by some other entity besides my mom, who can no longer do it. And I’d like to see my Hubby more than one or two days a month.  These are my dreams. Oh yeah, and if my sister could see one of these items through, that would be a friggin’ miracle.

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Exhausted

Broken. It’s just mind over matter now. Home and rest is so far away…

Getting my brother moved (a Herculean feat) will help my parents’ mental state immensely. But I can’t make up for 30 years of heartbreak and difficulty. And I wasn’t always so understanding of their ordeals in dealing with him.

My Dad’s out of the hospital. He has a leaky heart valve, for which he’ll not be getting open heart surgery. So apparently he’s been sent home to die. Which will get him first–the heart or the cancer or a stroke caused by both…?

I’m crushed and I want to lie in bed and have a good cry. But I can’t. And the bitchy older sister who has heretofore not lifted a finger and refuses to have anything to do with my brother isn’t doing much for my health either. But I’m glad for at least some support. She’s the only one not ill (probably because she has no qualms walking away).

Melodrama, I know. But it really is tragic. I envy people whose lives aren’t one giant inferno.

I’m so tired and sad.

It never ends

Because my plate just isn’t full enough, add to it the new problem of my brother being evicted out of the apartment he’s lived in for 10 years.  More than likely the landlord has had enough with my brother’s hostility towards attempts at interior maintenance and clean-up, so the long-suffering landlord used this as the last resort.  He was offered another apartment at a different property, however, but it’s in a horrible neighborhood, too dangerous for my Mom to drive into.  (My Dad checked the place out and witnessed drug transactions out front, in broad daylight.)

So… guess who has to go down to deal with this situation? I’m trying to do things online but it’s not working well.  I’m guessing I have to go and look on the college bulletin boards  myself.  Or someone has to.  Maybe my brother, clinically a few olives short of a greek salad, will find an appropriate replacement himself, which would be odd but not unthinkable.  If not, I envision a storage unit and a cheap motel…I don’t know what else to do–

I’m whining, I know.  But more than that, I’m feeling terrible for my parents.  Dad has stage IV lung cancer, Mom is 76 with one foot in dementia and the other in her own escalating health crises.  So really, I’ve 3 people to care for, and I just wish my own friggin’ cancer would take a break so I can stabilize everyone for just a second.  My parents haven’t had a moment of peace since my brother lost it, either before it was discovered and certainly not after.  I am horrified, thinking back on this.  And I imagine my Dad’s just hanging on in order to support my Mom.  It’s a giant mess – I just don’t know what to do about it.

Leaning into the points

I just started reading Pema Chodron’s, When Things Fall Apart.  Alas, it’s due back to the library so I guess I’ll have to request it again or borrow it elsewhere.  I don’t buy books much anymore.

My oncologist asked, “How’s life?”, to which I answered, “Well, I have it. I’m still here.”  He became quite serious and I thought I’d heard wrong, as I often do.  I repeated, ” I still have life—is that what you asked?”  And he said, solemnly, “You’re not chipper, the way you normally are.”  Not sure how I responded but once we got chatty things were fine.

He prescribed Advair for my wheezing (since I gave up Asmanex due to the ocular pressure it was causing), recommended I stay the course with the UC Davis trial I’m on (MK2206 + Tarceva), and dropped the bomb…He’s moving to Southern CA!!  His wife just got a fellowship to UCLA, so I assume she’s a physician as well.  Bastards!  I have to get another oncologist AGAIN?  It’s not until May but he’s looking for a job.  If we move to SoCal I might be able to follow him, but that’s a far-fetched situation, not to mention I don’t like SoCal Kaiser. I suppose it was meant to be but I need to find another radical mind like his, I suppose.

When asked about other trials and whether Kaiser approves out-of-state trials, he said he was willing to help me (and he was quite serious).  He might have to do some begging, but he could probably get me in.  The reason for this: I’ve “outstripped all (his) expectations”.  (Maybe I AM a cat.) This was at least reassuring, since I’m considering Univ. of Colorado. The trick is to do this before May.

Finally, he said his instinct was to put my Dad on Carboplatin/Alimta, rather than Tarceva, and that I’m quite distanced from my disease.  Not sure what he meant by that, but he probably also finds it peculiar that I can discuss it like some object.  I assured him that I can be emotional but have lived with fear for 5 years now, and I only behave that way when I’m well.  Fear generally takes over when I’m unwell.

I asked for a recommendation for a Vietnamese restaurant. “That’s the most important thing we’ve discussed all day!” Totally unexpected response but, whatever. Kind of like when I offered him an Altoid and he exclaimed, “Thanks for bringing me back to medical school.  Wintergreen. We used to eat these.  Instead of smelling formaldehyde around the cadavers, it was formaldehyde and wintergreen.”  Ohhh-kaaayyy.

I guess I’ll continue recovery mode today, and not do much of anything.  I seem able to breathe deeper, in spite of the wheezing.  Almost feels like something’s breaking up in the left lung.  My oxygen was at 98%, my blood pressure was awesome (pretty low), but my pulse, as usual, was kinda high.  I keep forgetting to ask what that’s about.  One of the interesting things my onc asked was when my next scan was due and if we could scan sooner.  The caveat with that is, if something turns up on the scan (progression), I’ll be kicked off the trial.  To which we decided – it’s better to know sooner, rather than later. I’ll find out on the 14th.

August extracted a great toll on me.  There’s admin crap to do but maybe one more day won’t make a difference.  Time for magic pajamas.

My heart goes out to Judy and Morris Matsunobu – Naomi’s parents, as they head to Hawaii for family matters.  They scattered Naomi’s ashes in Manhattan on Sept. 4, the day before her birthday.  She would’ve been 39 this year.

Call of Life

I’ve just noticed a movie trailer about Sarah Palin, and it freaks me out.  I tend to believe that it’s people like her that will move us closer to the catastrophe we are bringing, as described in Call of Life:

My friend Bernard, past vice-president of Sierra Club, is featured as one of the speakers. After a visit with him and a limited discussion of the actual crisis at hand (we’re only familiar with things that affect us, which is so superficial), I’m definitely part of the problem, rather than the solution.  We’ve just acquired all those damn gadgets!!  My mamby-pamby recycling/composting/reusing efforts is bullshit compared to my consumption, and I don’t consume half as much as most people!

I can’t use the excuse of a terminal disease to exempt myself from conspicuous consumption.  But I see most people don’t really care.  Which is horrible.  If everyone made some incremental changes, and maybe tried to do one thing towards preventing the mass extinction crisis, Earth might have a future beyond 50 years.  I know, we’ll all be dead so what does it matter, but what about your grandkids??