Liz's colonic journey

Archive for June, 2013

Day Two: San Francisco is fabulous

So some of you have been asking, how the trip over was. In short, it was nightmarish. Since we got to SF though I’ve been able to parse bits of the trip and remember the good bits and the horrible bits.

The morning we left, just before Sharon ferried us to the airport, Pat was asking if we should cancel because I was feeling nauseous. This in spite of Doc Landers ordering me off the Xeloda, last Wednesday on the way to our wonderful PaperHeads getaway. That was so great to spend time with funny, witty, interesting and stimulating people who made me feel very special, and helped me through a really bad pain experience. We, jointly decided that it was time to break out the Durogesic patches (morphine) and seriously start with pain management.

Paulette, Lee, Sioux, Carol, Fiona, Nicky thanks for holding my hand, translating the googled package insert and actually getting the packet open and patch placed. Mostly thank you for making me laugh through it all, and drawing on your resources ( thanks Wayne), to establish that Tramper would not fight with Durogesic. Six of the best minds in SA at my disposal. That was an honour. Without that experience, i might have canceled this trip.

At OR Tambo my brother, Andy and his lovely family came to sit with us till we caught the London flight. Luckily I had a Checkers packet folded up in my bag, because nausea became active. Paulette had been working on Virgin Atlantic to try and get our economy seats upgraded, but it didn’t come off. We paid for extra leg space. The VA folk seemed to be reluctant to let me on board if I was too sick. Understandably, I suppose. The fact that we shared the flight with a school tour wasn’t enchanting, screaming, excited 15 year old girls was a bit hard to take.

Somehow we got to Heathrow. I spent a lot of time in the loo, with what I’ve worked out is ‘second day of patch’ -diarrhoea. Needless to say I was pretty washed out!

I’m a bit puzzled as to why the Harrow customs authorities insisted on us unpacking all our in transit meds and toiletries from the clear plastic zip bags we had and packing them into flimsy polythene bags instead. We didn’t quibble but sacrificed a tube of toothpaste to the customs gods.

Pat booked me a cubby bedroom, in one of the lounges, like a closet with loo, shower and bunk bed, tv, in the space of the average wardrobe. It was heaven to sleep till it was time to fly again- five and a half hours. Pat’s cell fritzed so she spent most of the time trying to sort that out.

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The folks that assist one’s passage were a delight throughout, just blasting through queues, clarifying our confusion, getting us where we needed to be. Fantastic. We wouldn’t have managed without them.

The flight to SF is a blur of naps and bathroom visits. Luckily we were seated in the ‘blockhead’ where the kids in bassinets are usually, so we were close enough to have no drama or painful waits. They seemed to feed us something every hour. I managed the overran and two glasses of water and was a teary pain on the bum. Pat was a hero and must have been totally knackered.

Jose helped us of the plane with friendly speed and efficiency at SFO. There was no way I could have walked at that point. Seeing my bud, Karen with the wheelchair was the happiest moment I’ve had in years. I was close to a weeping fit with relief. She and Paris got us through the hectic traffic to our condo with such grace. And somehow we had groceries and dinner makings. I have no clue how that happened!

The condo:
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Our first day here was great. We stayed on the Castro Valley side of the Bay, and visited Berkeley for lunch and a walk on the pier. It was only on the way back from the end of the pier that I needed the wheelchair.
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As you can see the wind was pretty chilly!

Yesterday, While Paris went of to do film festival stuff, Karen drove us around SF city on what she called the ‘nickel tour’. Seven and a half hours of SF traffic during Pride Week? Priceless. She had all the stories of living here years ago. We even saw her apartment, one down from where Janis Joplin lived in the Noe Valley! That’s where we stopped for a Peruvian lunch, having driven from the Embarcadero and along the Pride parade route.
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The view from Twin Peaks is a treat and somewhat of a local secret I think.
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We went past the church that featured in Sister Act. Haight-Ashbury to look at tie-dye:
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On the way out through the Golden Gate Park, we speed at the Cliff House, where we saw the setting of that famous scene from Harold and Maud. It had been a bathhouse that burnt down in the Thirties.
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Golden Gate bridge:
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Brought us to the end of the three bridges tour -Bay Area bridge, Golden Gate and one other, the name escapes me.

We’d planned to visit Fisherman’s Wharf via the BART today. Karen had to do film festival stuff so we were on our own. Pat and Cathy talked me into taking a rest day. I ended up sleeping from 12 to 5pm. Pat thought I’d gone into a coma!

I’ll have more energy for tomorrow though. We’re off to the screening of Paris and Karen’s movie, Last Call at Mauds, followed by a visit to the pub that used to be Maud’s. Sounds like fun!

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I’m actually feeling very good today. Even with the chill in the air – Durban doesn’t really get cold but I’ve got my new fluffy scarf, a new grey beanie and my new red and black fingerless gloves (care of Dischem – at 20 bucks a pair of gloves who can resist?). We’re starting to get excited about our trip now. My British passport arrived last week Friday, so I can be in the UK legally – yay.  This new energy is great because we can actually think about what we would like to see and do in California while we’re there. Of course there’s Pride on the weekend we arrive, and the screening of K and P’s movie at the Frameline film festival. We’ve agreed that we should definitely see the Cornerstone Festival of Gardens http://www.cornerstonegardens.com/.  Twenty-two designer gardens all in one place?! Sounds marvellous.

I had a CT scan on Monday – to see how this latest regimen is working – The Campto + 5FU and to assess my quality of life on it.  We met Doc Landers today to discuss the results. I could tell from how serious he was that the news wasn’t great.  He was surprised when I said that I felt relatively good and that handling the side-effects made this latest round of chemo reasonable. I mean I’ve been able to actually think and give my M students the feedback they need, fairly quickly. I’ve been able to work at home on the days I haven’t been able to make it into the office.  It’s the physical effort of getting to work and crossing the parking lot and then going up to to the office that is tiring. I’ve loved being able to get in a couple of times to see my amazing colleagues – who are full of life and creative ideas – making things happen. When I get home though I crash for a two hour nap.

This physical tiredness has worried me and made me kick myself for putting off travelling (because we couldn’t afford it or because work needed me too much or some such rubbish). It means that I won’t be able to bounce up and down trails in California’s wonderful nature reserves like I could have a couple of years ago. I’ll see redwoods though, and Alcatraz and San Francisco Bay, the BART and the Muni and that’s before we get to LA! The moral of the story is get started early on your bucket list – the bucket is deep!

The news is a mixture. My lungs are better, but the liver lesions are starting to growing into each other (this is surprising because I haven’t been feeling liverish or nauseous after my few cheats (viz. chelsea bun, block of chocolate,the odd caffeinated coffee) ad haven’t been bilious at all this time round.  Doc Landers showed us the scan and my liver looks like one big dark grey blob as opposed to a light grey mass with black spots. Basically, between Pat and Doc Landers, they’ve decided that this regimen of the Campto and 5FU is not worth it in terms of my quality of life. I’m feeling good today, so I don’t really know – but Pat remembers all the bumps while I put them behind me as soon as that day is over. It’s true that I’ve only managed to get to the office a few times in the last month, because of the side effects.

What has got me through those grotty days has been the visits, facebook posts, the text messages and funny emails. I’m blessed. Joan’s little love palm is thriving in our bathroom. Thanks to everyone for your support – it truly does make a difference. Hugs (even virtual ones) and energy and thoughts really energise me.

Doc Landers congratulated me on making 20 months – when the prognosis was 6 months to 2 years. He reckons I can stick around a bit longer and he’ll dance with me at Christmas. I’m going onto the pills , Xeloda, which are basically the oral form of the 5FU that I’ve been on all along. I start with that on Monday – basically it’s 14 days of a dose morning and evening, then 7 days off ( which makes a cycle). The side effects are the nausea, possibly vomiting etc. The worst thing apparently is hand-foot syndrome, where they get sore and possibly start to crack from skin dryness. Apparently when that happens you just stop taking the pills until it gets better and then you start again. The idea is to stop the lesions growing even more, though there have been some reports of shrinking these are rare.  The plan so far is that I’ll be on Xeloda until we leave (14 days) and probably stay off all chemo until we get back to SA. (We’ll find out for sure on Monday.)

I think this is probably the best possible strategy for the trip. No doubt I’ll be knackered by the time we hit SF, but hopefully I won’t be suffering with dire rear for the duration of the flights to London and then onwards. I’m thinking they need to give me a seat next to the loo in case!

It might be fooling myself but the idea of actually being in control of the medication appeals to me. Such a control freak!