Onco-traveling and other stories

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Now there’s an old photo.  Treasure Island, 2002.

Indulging some down time.  The past two days were long and medicalized.  At the Hub’s urging, I gave in and hauled myself to Urgent Care on Tuesday for a possible blood clot.  I didn’t have the classic symptoms, but my right leg had bothered me for a week, with chest pain and increased shortness of breath.  I knew two people who’d had pulmonary embolisms without manifesting symptoms.  5 hours, a Doppler ultrasound, and CT Angiogram later, I was negative for clots.

Wednesday was a typical 19 hour Denver day.  The NP thinks the lump on my arm has grown, that it’s likely a rare metastatic spread to muscle,  and that my feet are a horrible mess.  Infusion was kind of nice.  For only the second time in a year I got a private room (bed for me, recliner for Hubs, and music, courtesy of the iPad).  A new nurse used a manual blood pressure pump to find my veins.  She’d never used that type of IV needle before, and I was her first victim.  This resulted in blood squirting everywhere, but I guess it’s better than being stuck three times and failing.  Hubs and I slept soundly for a couple of hours, cloistered in the darkness and silence afforded by the privacy — a rare combination in that large and busy infusion center.  Afterwards we had dinner at the hospital cafeteria, which surprisingly offers decent food (far superior to the cafeterias at Stanford and UC Davis).  The long, fevered journey back on an oversold flight was a sardine can of passengers infringing on the Hubs and mouth-breathing halitosis over his head.  I had a splitting headache by the time we got home.  The 5mg of oxycodone I received during infusion had long worn off; my left ribs/shoulder blade were screaming.  I’ve had increasing pain over the last month, ergo the PET scan on the 29th and a visit to the docs up north.

I’d arranged to call a reporter at the Denver Post this morning, so sleeping in was out.  They’re doing an article on people who travel for treatment to UCH.  I’m not sure if they’re covering other hospitals in Denver as well, but Dr. Camidge asked if I would do the interview and it’s the least I can do in return for all the brain-picking I’ve done to him.  A thyroid cancer patient from Saudi Arabia is also being interviewed.  I talked with the reporter for 50 minutes, after which he asked if I would consent to being followed by him and a photographer on treatment day, starting with the airport?  I said I’d think about it, and he needed to be aware that I had bad days, and I’d hate to schedule something just to find I wasn’t up to it. The probability of this increases each week, since I’m now in progression and will likely be removed from the trial pending results from the Feb. 6th scan, or even my PET scan.  I don’t know if he was recording our phone conversation, but I’m a fast talker and I can’t imagine how else he could capture half of what I said.

I actually sat on the couch and watched tv today.  I find that both Vicodin (5-500) and Percocet (5-325) last about 4 hours, 6 at the outside.  Vicodin gives me a hangover after a couple of doses, and Percocet, while a bit more effective, seems to make me dizzy/nauseous.  Motrin is the only thing that doesn’t have side effects, although lately that seems to give me a stomach ache.  I sure miss acupuncture and massages!

HUBS

It’s the Hub’s birthday this Saturday… he wants an ArcticCat quad… it’s 12K so a little out of my price range at this time.  Why can’t he want a fancy watch or sunglasses or a trip to Catalina or some fancy gadget?

I could buy him a pellet gun to hunt gophers with, as a gag gift.  Over the weekend he took out a loquat tree which put up quite a fight.  In its place he planted a Blenheim apricot tree we purchased at the end of summer from Hamamura Nursery, the last private nursery in this area.  They plan to close this year, which is a shame. They have the best selection and assortment of everything, but the box stores and water bills are killing them.  Anyway, the apricot is in a (hopefully gopher-proof) cage of chicken wire and rocks.  We’ll try another fig tree in the last one’s spot, with a cage as well.  We’re also using gopher repelling tactics in an attempt to drive them up the hill and off the property.  We got inspiration for raised vegetable beds from my old friend Karen, who visited on Saturday.  Her winter garden is full of cauliflower, tomatoes, peas… it’s incredible.

One of Hub’s favorite friends/colleagues in the Netherlands passed away last night of stomach cancer.  Franz Top was 57.  Not sure if he died or chose euthanasia (will have to translate message from Dutch).  He will be missed, and the prospect of filling his shoes was presented to Hubs, who I don’t think feels equal to the task at the moment.

HOW IT’S DONE

I discovered a cancer blog via WP reader yesterday, written by someone who by all appearances seems affluent and well-insured.  Cost doesn’t seem a concern, as they receive care at top-notch hospitals and seek the best practitioners regardless of location. They actively fundraise for treatment expenses and have a “Donate” button on the blog.  They spare no expense in the quest to win their battle, so they must have enormous resources at their disposal.  I was beside myself.  I suppose I’ve not been resourceful and have been going about this all wrong, worrying about insurance and bills!!  It would feel strange to do that, I think, but if it were set up for me from the get-go, maybe it wouldn’t be so odd.  Few of my friends have money, and maybe this would be possible if I were on FB and had thousands of friends and FOF.  There was even a page enlisting offers for meal delivery.  Like I said, I’ve been doing this all wrong!  (I laugh, but maybe I should cry!)

I suppose the whole Susan G. Komen thing started with someone harnessing the power of social networks and organization to fund an agenda.  I might be a person to do that if someone close to me were in the position I’m now in.  But everyone’s different and when the patient seems capable, the need for assistance often doesn’t seem urgent.  It could be a matter of communication – if the person doesn’t assert their needs, those around them don’t step up.  Or it’s a matter of popularity, or management thinking, or resourcefulness.  I’ve never been that popular, social, or organized (nor have I ever desired to be, and possibly neither have those I surround myself with).  Suffice to say, I thought that person’s blog was curious…

I am content to receive macarons on a rainy day 🙂 (thanks, Tara).  And despite feeling nauseous, I made a nice hot dinner for a cold day.  I imagine surviving would be awesome if I was served hand and foot and had money coming via inter webs, but cancer is never lovely, and life, health, and love any way it comes is all that matters after awhile.

ODDS AND ENDS

Hallelujah, my Dad’s book is finally printed! Miss Moneypenny is finally worm-free.  Hubs has been on a Playstation 3 marathon since we got back from NY.  On that note, I’m off to the far reaches of the house, in a futile attempt to escape the sounds of gunfire and shouting.

Good night, and good luck.

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Mid-winter blues

It’s very cold, though clear.  Another nutty week come and gone.  I’m now on Cycle 13 of afatinib-cetuximab.  The past month has been the rashiest for my poor face.  I wonder if my skin will ever recover.  I’m itchy, have no eyebrows left, and am taking Vicodin almost every day.  I’ve now been given a prescription for oxycodone, because it appears I’ve not been managing my pain very well.  I don’t fear addiction, but I’ve tried to ingest as few medications as possible in an attempt to spare my liver, kidneys, whatever’s left that still functions.  Unfortunately, being unproductive is a drag, and pain makes pretty short work of the best laid plans.  So we’ll see.

One of my uncles died of colon cancer over the weekend.  He was only 70, I think.  He was diagnosed in 2010.  During surgery, it was found to be more extensive than originally thought, but still treatable (stage 3).  He had one or two rounds of chemo and decided it was intolerable.  Apparently he had been on alternative therapy since.  A month ago he went to Chicago and upon his return decided he couldn’t withstand more travel.  Then he died.  This is the spotty sequence of events relayed to me through the inevitable family chain (lots of distortion).  He was a nice guy, generous, easy-going, with a great appetite for food, travel, life.  I’m sad he’s gone, but am relieved he no longer suffers.

Over the past week I’ve been trying to work on getting my “affairs in order”.  The Sunday before last was spent in the ER with my father, who had sudden acute chest pains at 7pm.  We were there until 4am Monday morning, when he was released against the doctors’ advice.  He saw his oncologist 5 hours later and began second-line chemo on Wednesday (Gemzar).  Yesterday he said he felt weak and tired, but he ate like a champ at the seafood buffet.  His book is finally being printed, so I hope he’s able to pass them out before he perishes.  I hope chemo allows him more time without too much impact on his quality of life.

I’m also trying to deal with a menacing bump on my left arm, which threatens to be a new malignancy that would disqualify me from the clinical trials I need to survive.  On the other hand, it could be a rare metastatic spread of lung cancer, which therefore needs to be dealt with immediately.  I don’t know how to deal with it.  I’m stuck between “don’t ask, don’t tell” and “get it checked out before your arm needs amputation”.  This is compounded with the threat of a blood clot… woke up with pain behind my right leg, which is where a DVT (deep vein thrombosis) would develop.  Later I had chest pain, then a headache, and at all times my breathing’s not great anyway, so shortness of breath isn’t a surefire symptom.  So a bit on edge here.  And now I find out my Mom’s been at urgent care with my brother for 5 hours.  Poor thing, she must be exhausted.  Where does it end?

What else.  Our next door neighbor appears to be moving.  She lives alone, her only relative being a brother in Texas.  First came the carpet cleaners, then the Serv-Pro folks. Now the giant U-Haul and movers.  I hope she’ll be taken cared of, wherever she goes.  When her back yard flooded, we pounded on her door for days before she answered it.

Today was my friend Tara’s birthday.  A bright spot in the fog.  She left a box of macarons at my door last week, and brought over bean soup the day after Denver (when I’m always too tired to cook).  She’s been through a lot.  I’d like to live a bit longer so I can be as good a friend to her as she is to me.

Anyway, enough for one post.  I’ll talk about something else another time, like movies or the  gophers that ate my fig tree over Christmas…

7th New Year

Surprised and grateful to see 2013.  By all accounts, 2012 was a crazy, eventful year, capped by traveling to upstate New York to spend Christmas with Hubby’s family.  It snowed quite a bit, and the landscape was old-fashioned-greeting-card picturesque.  Just what Hubs wished for.

The return home was an epic of delayed flights.  Hence, New Year’s Eve was spent home, as was New Year’s Day.  It’s sunny and lovely out now, and I might take up the challenge of a walk.  These days it IS a challenge.  I’m quite short of breath, my face is rashy, my feet are raw, scalp looks like it’s been eaten by zombies.  Oh well.

So what does the new year bring?  The search for a new clinical trial, as my December scan showed progression.  I’ll stay on this trial as long as I can, but am prepared to get booted soon, as my coughing and pain increases daily, and I’m not sure what the threshold is for acceptable progression.  There’s relief in not having to go to Denver biweekly, exchanged for the anxiety that another treatment – if one can be had – will not be effective.  A break from these side effects would also be nice, although breathing is more important, of course.

Hubby came home from New Zealand and is foregoing a return based on my health status.  This throws the work situation into uncertainty, of course, and I feel responsible.  Blasted disease!  He’s good at coaxing things out of the woodwork, so we’ll see.  The Dutch may come through yet, or the Canadians, or if worse comes to worse, New York.  It’s impossible not to compare everything with New Zealand.  The only consolation is knowing he can go there and live the life he wants when I kick the bucket.

While I’m happy to be here now, and find things that inspire me to keep going, I’m back to thinking of the inevitable, and maybe I’ve had a pretty long run.  I think I’m making peace with possibly dying this year.  Maybe I’ve had enough, I’ve put my loved ones through enough, the medical breakthrough we dream of isn’t coming soon enough.  When is enough, enough?

I don’t mean to be morbid.  I’m hoping I can keep things in perspective and be a little happier, since that seems to be what  bothers people the most.  (They all think I should be HAPPY… etc)  Why I happen to be surrounded by those sorts of people probably stem from being cheerful and stoic all the time.  It’s pretty tough and not high on the priority list, so I’m just myself more and more, which is not weepy but not skippy-doo-dah either.  I seem to be forming a new year’s resolution list here…

Anyway, Happy New Year to everyone.  Wishing health and prosperity, joy, beauty, and strong bonds.  Cheers!