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.

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.

Holding it together, sort of

Not really.  Waiting for the other shoe to drop.

My father was admitted to the hospital today.  I’m starting to feel like Humpty Dumpty, with a delayed reaction, after the fall.

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??

Hope Road by Anne Clark

Not sure what made me think of this, but I’ve always liked her spoken-word style.

 

The long month of August

…during which too much dinero was spent on gadgets. Early in the month Hubby got a fishfinder/chart plotter so he could find his diving spots in Monterey.  This was followed by his gaming computer contracting a virus that ate the start-up configuration file and who knows what else, thereby locking up many hours of Solid Works drawings.  Silly that he didn’t back it up, but that’s Captain Hindsight speaking.  He actually took it into a computer repair place and they couldn’t even clone the hard drive.  So it came to this, the 27-incher:

Not my photo

Next came the coffee machine.  Poor Senseo. We’ve had the thing forever, but I stopped drinking that eons ago.  The beautiful Breville espresso machine – which works when it wants to but mostly takes up counter space – is now on the floor of the mud room.  Maddening.  A stroll through Sur La Table at the Ferry Building convinced the Hubs that this was the machine for him.  Great espresso with the ease of Senseo…and recyclable capsules (made entirely of aluminum)! And yet, I need steamed milk.  I really do.  But is it worth another $100? Not really.

Then there’s the ongoing commute to and from SoCal to check on my Dad.  The second opinion oncologist recommended Tarceva, in spite of not being tested for an EGFR mutation, so he let the oncs duke it out (in Chinese, probably) – the molecular biologist vs. frail child turned physician.  His onc gave him the prescription and said, “Don’t do it if it costs $3K. Anytime you want to go on chemo, let me know.”  Whaaaat?  Poor Dad now has a raging rash in 103 degree heat, accompanied by fatigue and excruciatingly dry skin. Worth it as long as it’s effective, and buys him more time to finish his memoirs.

He turned 78 on Labor Day. He believes this may be his last birthday, thanks to Second opinion onc’s remark that he might only live to Christmas. We went to Sunday brunch at a lovely spot on the top of a hill overlooking our old neighborhood, and had a surf-n-turf barbie on his birthday.  I see the sad look in his eyes that I’ve worn for the past five years.  He’s still cheerful, the way I am, but he’s also desperate, confused, trying to keep from being overwhelmed by so many battles to be fought in his old age.  I bear this great sadness too, and maybe now they’ll understand that it’s not easy to be a spectator in spite of one’s illness, when one has always been a doer.

Sis put brother on her cell phone family plan, so he’s communicado again. That’s another ball of wax, even more volatile than my father’s situation. It’s a battle that might have led to his illness, or not, it’s hard to know.  That situation has marred his retirement years and generally killed the dream of having a son who will take care of you in old age.  I always thought the caregiving would fall to me, and it is, but the future and my health is so uncertain.  I wish for the miracle that would be my sister stepping up to the task, but some people just aren’t into it.  She’ll do only what’s required when the time comes, if we all kick the bucket, but she’ll neither invest the time nor the thought that the situation warrants.  It’s frustrating and sad, but people only change if it serves them.  Her job comes before my parents, which is justified by the belief that she would become homeless if she took time off to care for them.  On the other hand, she seems able to take time off to drink wine in Napa…It’s interesting to note that she’s popular because she can be quite fun.  As long as she’s not in charge of your money or your life, you’d be fine.

Last but not least was the 10 day visit from the in laws.  Lots of activity, mostly at parks (Tilden, Lake Chabot, Marin Headlands, Golden Gate) and farmers markets.  Unfortunately, we spent too little time at Golden Gate Park, where the dahlias were in full bloom.  Much walking, Xbox Kinect-ing (at the sister’s), and consumption of Mexican food.

I also managed to read The True and Outstanding Adventures of the Hunt Sisters, watch True Grit and Toy Story 3, listen to a few chapters of The Help, and start The Tower, The Zoo, and The Tortoise (which isn’t sticking, so I’m moving on to Lucky Jim and When Things Fall Apart).  UC Davis kept me on the trial after the 3-month endpoint, despite a mixed response on the CT scan (upper Left lobe improvement, but increased density in lower lobe).  The ability to walk in to the clinic and have a conversation probably means I’ll live another three months, but the wheezing and coughing is really bringing me down.

It is an understatement to say that the only thing keeping me from falling over is the Nespresso machine. One more shot and I might be able to pull off baking. There’s a whole mess of fruit to do something with.  On the other hand, there’s always tomorrow.  (Did I really just write that???)

Did I mention autumn might be arriving, with its warm days? And that the giant tomato plants FINALLY have fruit (the question being, will they ripen)?

“The last refrigerator”

Rather than try to catch up August in one post, I’ll just start with the moment and go from there.

This is a straightforward – and touching – article which succinctly describes the plight of those struggling with lung cancer.  It’s not unsentimental, but it’s certainly not dramatic either.  I’ve put off buying shoes for years, wondering if I’d ever wear the dozens of shoes in my closet that still look brand new.  I bought three pairs in the space of a week, so overcome was I at the sorry and pathetic state of my shabby footwear.  Yet, it seems silly.  The damn shoes will probably outlive me, and I should be giving things away.  Somehow it feels like surrender, which I’m not ready to do. I’m now thin enough to fit back into things I haven’t worn in five years…which is actually a bad sign (for cancer patients). Strapless summer dresses which expose the scary hyperpigmented areas of skin – scars from taking Alimta and Tarceva; Mod clothing from prehistory…fashion indulgences from a time when I could dream.

I guess that’s what disease robs us of – dreams – of the future, of frivolity, of even the most mundane things.  Mostly, I hate feeling silly for dreaming, yet I can’t help doing either. Which brings me back to the article.  My refrigerator has been on its last leg for a while, but it seems silly to buy a new one, under the circumstances. Appliances are utilitarian to me – they mean nothing unless they enhance a particular interest (in my case, cooking/baking – so a professional, high BTU, 6-burner gas stove with down-draft vent and smokeless grill, outdoor pizza oven, or a warming drawer might excite me). Even then, it’s still ridiculous under the circumstances.  I’d rather go to Italy or New Guinea.

There. With that rant out of the way, I think I better eat some chocolate and be more cheerful in the next post.

And to all you dear friends out there, I’m still breathing (barely), but my lungs sounds like a f*%#ing orchestra of woodwinds and percussion. Oncology appointment on Monday to determine if I should stay on this clinical trial or move on! Thanks for nudging me…I’ve been wondering whether to keep the whining to myself.  Happy to torture the world-wide web with continuous rants!