Random updates

How is it that I can't steal a few minutes to post each day?  I really ought to.  Things get away from you when you wait too long—

The cancer situation:
After the July 16 scan showed new nodules in my right lung, I was referred to UC Davis for a consult and possible participation in a clinical trial.  They took FOREVER (over a month) to review my records and give me an appointment.  When they finally called, my appointment was the next day.  And after all that, I got a "Fellow" who did the entire work-up, and got the main oncologist, who answered questions for 10 minutes.  All they really want is to recruit – no interest at all in what's going on with you.  He said, "You should be the poster child for lung cancer", as he was leaving the room.  He seemed surprised I was so chipper, and the trial coordinator asked if I wanted a job!  Problem is, with the Fellow and trial coordinator also in the room, I don't see how the doc could ever say something like, "This isn't very promising – don't do it."  In not so many words he suggested returning to Tarceva as a single agent if I hadn't progressed.

I went on Tarceva (one of the cancer drugs I was on the past 2 years) as a single agent six weeks after my scan.  It's Day 17 and still no rash, whose appearance and severity supposedly indicates its effectiveness.  I'm getting worried that it no longer works, but overall pain has diminished, which I don't think is purely subjective.  The accompanying fatigue is something I don't recall from last time, but maybe I felt so crappy I was just happy to breathe.  If I have to move on, the next plan is a clinical trial (which can be scary, especially since I was in the "placebo arm" last time).  The doc thinks the Halichondrin B trial at Davis, but I have other ideas.  I'd rather do a targeted therapy (another inhibitor of some kind, like XL-184 or BIBW 2992, which isn't being tested anywhere near), and save the systemic chemos for last.  It's difficult, trying to come up with a treatment sequence that balances quality of life with extension of overall survival.  Research measures significance in increments, like 2 months.  In real life one measures significance more in terms of quality of time, rather than length.  
Recent brain MRI is clean, which is a relief for now.  I was getting some crushing headaches for awhile.  Also, three cheers for Naomi and Carolyn, whose continued strength, survival, and amazing characters keep me sane and inspired.
Still trying, though it's even more difficult now that my focus is on treatment and hubster's is on the string of non-stop, month-long work events that occurs each fall.  Neither the hubs nor I care that much that we lost on offer #8 (large, half acre, end of the road).  Maybe we're not really serious…It's just hard to do this when one person's perpetually gone and the other doesn't have alot of energy.  Anyway nothing even approaches the disappointment of losing the house with the pool and outdoor kitchen.  I bucked the idea of a pool for awhile, but I've reconsidered.  These days I don't like to swim in open water because I can't rely on my lungs.  Perhaps I don't trust others to save me, either, because most people are too busy enjoying themselves in the water with you to realize you've cramped or whatever and are going down.  I suppose I could wear a lifejacket and fins, just to aid the confidence level, but building endurance is a priority regardless.  So I'm all for a pool, now.
What else?  The gardener pruned my sister's lemon tree and rather than waste so much fruit, I've been making (Morroccan) preserved lemons, lemon marmalade, lemon curd, lemon chutney, lemon ice cubes…I'll get to the Limoncello eventually…

It's a huge time-sucker, canning stuff.  It's also therapeutic in a strange way.  However, I now need a bomb shelter to store all this stuff.
The hubster's constant travels have a strange effect on my daily living.  When he's home, I can't seem to relax—I'm in constant motion, and I'm tired.  Is it the cooking, cleaning, laundry, running errands?  True, I don't cook or do much laundry when he's gone, but somehow I find time to sit out on the deck, blog, read, watch a movie, and still accomplish the hundred other things I'm supposed to do.  The tv is OFF, which is relaxing.  

Inspite of this, I miss him terribly when he's gone.  After a couple of days on my own, I'm usually rested or more exhausted by some random activity, and I'd rather have him around.  While he sits around playing Guitar Hero or Wii, he asks why I won't join him.  The response is usually, You want dinner (lunch, clean clothes, etc.), or you want me to play games?
Finally, it's been a tough month all around. My heart goes out to those who have lost loved ones.
I don't need reminders of my own mortality, but it makes me reflect on the changes I've made since getting cancer.  I hope I'm a better person, more compassionate and sensitive.  I recall vividly my inability to empathize (or maybe comprehend) when I'd hear of someone's diagnosis, death, or even the death or suffering of a relative when I was well.  I took the death of a stray cat harder than most events.  Lately I mourn friends' losses and suffering, and I have an overwhelming need to try to alleviate the suffering of those who can't seem to on their own (my brother, parents).  Sometimes that's the hardest, as it's usually bourne of a problem with no solution.  Death is that paradox, conferring relief and suffering simultaneously–to the departed and the survived.  I suppose my death will be a relief, but I've got a bit of fight left.  I probably need to reconsider how best to spend this time, though…
The days are waning, the rain has come, there's christmas stuff out on the costco floor…sigh.
Oh yeah, I did  enjoy the Sausalito Art Festival, which really is about art (no doodads here).  I usually go south on Labor Day weekend–it's my Dad's birthday, but I thought I'd be in full rash by then.  See what happens when you try to plan for side effects?  (Did I mention I cut my hair in anticipation of hair loss?)

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8 thoughts on “Random updates

  1. I agree with you on both counts. If only we were born with the innate ability to handle all the stuff, it would give us more time…but there's another paradox—how would we use more time if we had it?

  2. I have trouble trying to figure out how I'm going to feel about things in just ten years. It seems that every few years all that is familiar changes and it's like starting all over again.
    I was called in California and told my mom was only going to last a few months. I spent almost five years with her. She had three different bouts with cancer. Breast,remission,- lymphoma, ten year remission, Oat Cell Lung Cancer. She was in her late 70's and probably lasted her full lifetime. Her challenges were many but here life was so much more full than most people.
    She faced a beast for almost 30 years and had a better attitude and outlook than anyone I ever met. Fight on Jazz. Some of us are stronger than our adversaries. I think you just might be one of them.

  3. Hi Jazz. I have been thinking about you and wondering how you are doing. I admire your courage to be honest with yourself and to share with us. I am also amazed at how industrious you are with all you have going on. I am not sure how I would react – although I have come to appreciate the benefits of distraction. Times are tough.
    (BTW – if I am allowed my opinion – tell the hubster to do his own f*ing laundry.)

  4. Hi Jasmine:This is Elizabeth under Keith's id. I cannot remember my sign in info. What damage I could do using my husband's id!! Anyway, I still have your message from July/Aug in my cell phone. I was rushing around and too bad we couldn't connect. I will be in Northern CA again the second week of November, before Thanksgiving. We should try to meet up for lunch or something. It sucks the way the big institutions, such as UC Davis treat patients without enough compassion. My sister has had some experiences with docs at UCSF and especially Stanford that made her feel like a specimen, not a person.That is great that your CT Scan was negative. You have the right attitude about house hunting. It is really stressful. When you find the right one, it will just happen. A pool would be really nice or a jacuzzi. I hope you find your dream house that is perfect. (no fixer!! get a turnkey!!)

  5. This is a very late reply to a wonderful comment. Thanks for sharing your Mother's story with me. She inspires me through you 😉 I hope I have an ounce of her spirit and strength!

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