Onco-traveling and other stories

Image

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.

Advertisements

2 thoughts on “Onco-traveling and other stories

    • I remember that old pic taken from Treasure Island …That was an awesome view !! I love that Michael is able to be with you more now ! You are in my daily thoughts and prayers !! So glad Dad got his book finished 🙂 and I agree with Nichole , let that reporter follow you around ,I doubt he’ll keep up but personally , I think your amazing and I love you xoxox

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s