The thing is…cough, cough

It was a toss-up between this version and Stacey Kent’s, which was beautiful but accompanied by a static image. Kind of corny, but I love the song. “What are you doing the rest of your life”, from the movie The Happy Ending. Never heard of it.
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I’m a bit on edge, and it’s rising to the surface here. With that caveat, stop reading now, or continue at your own risk. Have a shot of scotch and listen to the music.

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Thursday/Thanksgiving Day – So. Something ate the Thanksgiving post. Which is just as well, it didn’t sport the right tone for a holiday about gratitude. The food was good, the circumstances were strange, the peaceful, easy feeling of years past seems to be now legend. I’m thankful my family could be together, but the bro wasn’t there, feeling uncomfortable for various reasons, and we didn’t spend much time with the ‘rents, opting to spend it with the nephews/niece. Thinking of it now, T-day 2010 was spent in the Bay Area (too much travel, I’m betting), and bro was in the hospital for pneumonia. He hasn’t had Thanksgiving dinner with us for at least 3 years, maybe more. This makes me sad, even if our present relationship is tenuous.

We replaced my Dad’s ancient printer and managed to do some minor stuff. I could sense his disappointment that we weren’t hanging out at the house. He was also surprised to find I wasn’t going to New Zealand. He’d gained three pounds since his first chemo cycle – no doubt due to Decadron.

Friday/ER – In the wee hours of the morning after T-Day, stomach cramps set in. At 4 a.m. the hotel alarms went off. 3 separate times. At 7 a.m. Dad was at the ER. Severe stomach cramps. Having just had chemo two days before, it was a potential emergency. Ironically, the first time they summoned an ambulance (advice nurse’s admonition), we were only a mile away. Spent the morning in the ER parking lot, walking and waiting. Dad was discharged after being given a cocktail that caused chaos on both ends. It was pitiful. Everyone said, “We ate the same thing, and we’re fine.” Oh yeah? Does everyone who ate the same thing also have Stage IV lung cancer and are on chemotherapy for it?

After the ER, there was a bright idea to take the nephews/niece to Oak Glen (an apple-centric touristy colony nearby) for some petting zoo action and apple pie. But first, the parents’ mailbox needed replacing! My folks have had the worst luck with mailboxes (vandalism, accidents, etc.). Hubs’ Marine Corps ethic kicked in (do more before 9 am than most people do in a day), went to Lowe’s for one of those super-indestructible metal jobs that weigh a ton, two bags of cement, heavy-duty bolts because the ones that come with the mailbox are super wimpy, etc. He finished in record time, we had lunch, and off to Oak Glen we went while the cement dried.

Oak Glen – I froze to death and couldn’t breathe (only 5k feet but my lungs are pretty compromised at this point) and damn if Hubs and the kids didn’t take all day to fish in some pond and feed the animals. There was no cell reception and they had the car keys. Whatever, I didn’t even get pie or hot chocolate 😦 and there was no shelter. Yes, I’m whining. I was super cold, grouchy, tired by then. Did I mention one of the kids shut the car door on my foot? We got back, installed the mailbox by flashlight, packed up the fruit (can’t leave without getting fruit) then cruised around to find food. The quest for food is such a chore lately. There are restaurants around but they’re unsuitable. We wound up at the swanky sports bar across from the hotel. YUCK (although their menu says they use local, sustainable products, blah blah). I discovered something new about the Hubs. He refuses to get takeaway and eat in the hotel dining room. He hates walking into a hotel and smelling people’s food!! He doesn’t want “to be that guy” who annoys other guests. What?!! Really? Where are we, Monte Carlo? I thought I was the finicky one about smells, but this takes the cake.

Saturday/26th – Blew town at 5 a.m., had breakfast in old town Pleasanton, strolled the farmers market, petted angry Siamese by 2. Hubs got one night to play PS3 and watch Pumpkin Chunking before setting off for New Zealand.

Sunday/27th – I went to bed at 2 a.m. last night. Lately I’m apprehensive about going to sleep by myself. I’m afraid I’ll stop breathing or be unable to call 911. Of course, Hubs sleeps like a log so if I stopped breathing, he wouldn’t notice. Anyway, this is a new feeling for me. The cats jockey to sleep on my chest so maybe they’re the reason I’d stop breathing. They don’t do this when Hubs is home. But it’s odd to feel insecure all of a sudden. After 5.5 years of being alone (3 spent in a neighborhood featuring nightly gunfire).

I had my CT/A scan today. It’s a special scan used to detect emboli (blood clots). My tumor biopsy (for purposes of mutation testing/determining the reason for acquired resistance to Tarceva) is scheduled for Dec. 8th, the day after Hubs returns from NZ. He won’t be happy about that, but there’s only a two-day window before he leaves again. They say the procedure is no biggie, but I’ve known people whose collapsed lung took days to reinflate. I’d rather he be present, in case something untoward occurs. My monthly visit to UC Davis is the 7th, at which time I will no doubt be terminated from the MK2206 trial. If not then I will formally withdraw. As far as I’m concerned, the MK is about as effective as milk thistle capsules (found to stop lung cancer in mice!). Beyond that, there’s the Zometa infusion and acupuncture sessions I missed due to the infection. I think this brings us into the middle of December, my Dad’s third chemo cycle, my Mom’s overdue physical, and a much needed reprieve for her in the form of a few days at Camp Cramer ;).

I’m pretty open about my disease. I look it in the face, I research it (when I feel well), I share fears and triumphs and questions and sorrow with all sorts of people on a couple of forum sites. It has changed my life and informed every aspect of it, yet, it often appears that those closest to me (except my Mom) just don’t get it. Lately all I do is cough cough cough. While I eat, talk, walk, sleep…coughing. My friend Tara points out that I’m in fragile condition, but no one acknowledges or makes allowance for this fact. There’s always some other overriding agenda, and, being a deferential person, I tend not to assert myself. I don’t whine or complain, nor do I put my foot down (why I rant so much here!). I internalize, which isn’t healthy nor helpful to myself. It seems odd that after 5 years of having cancer, I must still address my condition each and every time a situation arises. Is it because I’ve been healthy for a long time? Seriously – when will my inner circle take into consideration my limitations without my having to point it out? I could describe a million actions that occur daily to support this argument. It seems that conceptually, they know I have a terminal disease. But this idea isn’t applied to their daily behavior. I suppose I’m an adult – I have to look out for myself. Those who’ve never been ill just don’t have a clue, or don’t want to have one. Or figure if they ignore it, it’ll go away…

Caroline Top‘s funeral was on Thanksgiving Day (24th). Her husband, Janwillem, sent me a short video of the part of the service where he read a poem (in perfect English) I’d sent to console him on her loss (which I couldn’t access until I got home). I am deeply touched by this and hope she approved. It’s difficult to distill a thousand different thoughts into something presentable to such a varied group. He also posted the links to a documentary she’d participated in about a lung cancer group on the Hyves social networking site. She’s so alive and intense in the film, her passing was like the flash of final fuel in a rocket engine. I hope he continues to post on her blog. I wonder how people work through their grief. I can be a formal person, but deep down I feel intensely passionate – it’s often the most difficult thing to reach out to someone in grief and say or do the appropriate thing. I’m horrible at that, actually, even if what I feel is a deep desire to comfort that person. For me, I just want to go somewhere and walk. For miles. Hike is more like it. If I could still dive or rock climb, that would be the way to go – focused and brainless at the same time. No one knows you’re crying underwater. Physical activity is best, and long drives used to work. Drinking and listening to music until sunrise was another fall back (well, maybe it just makes one more morose, but I can’t drink much anymore, so that’s out). Running away and losing oneself in a strange place is my favorite escape. Grief and I are old acquaintances, and I’ve employed all sorts of methods to undermine his tactics. He can’t be avoided, so best to use him as a learning tool.

Sigh. Cough, cough, sigh. Judy, Naomi’s Mom, sent a gorgeous sweater Naomi knitted some time ago. Judy wasn’t sure whether Naomi had intended to felt it, leave it as is, or what. I’ve just been admiring it, waiting for some special event to wear it to. In a few days it will have been a year since she shed this mortal coil. I think I’ll wear it to the Japanese Tea Garden at Golden Gate Park and do something to commemorate them both.

I posted this video last year. It’s a favorite song of Naomi’s, and it’s spot on as ever.


10 thoughts on “The thing is…cough, cough

  1. Love and hugs. I know we can snuggle into the big princess bed and watch movies while eating gingerbread. :). We still need to go lay in the dome.

  2. People handle grief in so many different ways don’t they? Remember what i told you about my troubles with Dave? Well he moved out 2 weeks ago with no reason just that he wanted to have a new life…so I have become quite intimate with grief lately.

    • Oh Karen,
      😦 I’m stunned. And speechless. I’m beyond sorry to hear this. If you ever need to talk/vent/dump/cry I’m at your beck and call. (You know my email address, right?) Would it be easier if I rejoin FB?

      ((Hugs)) and a bottle of something to dull the pain.

  3. Wowzer…you certainly had a busy Thanksgiving holiday weekend! Give yourself credit for “staying with the program” concerning all the activities and family members involved (plus the emergency with your Dad). My wishing that your husband was more synpathetic and sensitive to you isn’t going to make it so but i will say that if it were me, I would make it known when I’ve reached my limit. But I certainly can sympathize about feeling afraid….my hubbums had to fly to Fla. to deal with his 91 yr. old father who had fallen and lay undiscovered for four days…while he was gone I heard every creak and and crackle all the nights long. I love my independence but I was glad to have him home again! I deeply hope all your testing goes well. My turn next week. Patricia

  4. God damn it, Jazz. I mean just goddamit. Have you mentioned to your family that maybe, just MAYBE, SOME ACCOMMODATIONS MIGHT BE IN ORDER? Like maybe you shouldn’t be stuck outside in cold weather at 5000 feet ALL DAY?? Hello, lungs, oxygen, elevation? Is this ringing a bell with anyone? Are they aware that you are not well? That maybe you shouldn’t be ALONE, CONSTANTLY?? I mean, what the hell?

    • Yeah, you know – there’s a two-part process that needs to be implemented. I need to quit feeling like I’m walking on egg shells as regards pointing out my limitations (as a general fact, although it seems it’s necessary every single time, which is tedious), and I need to better assess activities and NOT give the benefit of the doubt that people will be understanding. I’ve been too optimistic on that front, obviously.

      The alone-ness/not going out doing things while I can part…well…most people just don’t get it until it happens to them –

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