Friday, September 28, 2018

three time zones in a half hour

Our room in Hurricane. It had a very nice patio to sit out on and a huge walk in shower plus a nice breakfast in the morning

It was a toasty 100 degrees when we got to Hurricane. Too hot to walk around much but as the sun set, we went to the edge of the neighborhood where they were driving golf balls into the canyon

Zion the next morning. I have a mix of Steve's photos and mine. He has the good but bulky DSLR camera with a variety of lenses whereas I make do with an iphone

me on our walk in the narrows

overlooking Emerald pool

our b&b All sorts of colorful lights at night

the golden hour in Hurricane

these were all over  I thought they were Jerusalem artichokes but probably not

my view of Zion through the mandatory bus window

see why it's called the narrows

the virgin river

sometimes these would have huge lily like flowers on them

this spray of water was refreshing on a hot day

one can drive through the lower part of the park which we needed to do to get to our next stop Kanab
I remember this tunnel when I was a kid. At one point, it was the longest tunnel in the US.  We could go only single file so a wait was involved

Vermillion cliffs on the other side

Checkerboard Mesa

We flew into Las Vegas which was crowded and full of construction. I couldn't wait to get out of it. Our car started making all these beeping noises.???? Turns out it was equipped with all these accident avoidance measures. Steve was driving too close to the lane markers. We were the first drivers of this rental car we were told. We ended up putting 2000 miles on it and after our trip, it no longer smelled new.

How fast we went from  an overcrowded area to total remoteness!  We ate at a Mexican truck stop.

How were we in 3 time zones in 25 miles? Nevada is in PDT; Arizona is in MST; and Utah is in MDT. We of course started early that morning in Michigan which is at the western edge of the EDT. Arizona is one of the few states that does not do daylight savings time though Navajo Nation, the NE upper quarter does. We did stay there one of the nights. Figuring out what time it is was a challenge especially when it was not clear what part of Arizona were we in.

I thought it would be nice to see the Kolob canyon section of Zion but after driving a good hour extra to see it, it was closed! Backtracked to Hurricane. The preferred place to stay for Zion is a town right outside of it; Springdale but due to popularity of the park in the fall (summer is too hot)rooms started at $250/night. I got a very nice place in Hurricane for 25% of that.

We had our own studio apartment in a pretty adobe building with plenty of skylights. The hostess was very sweet. 70% of Utah is Mormon which means they don't drink alcohol or anything else that might be a drug such as caffeine containing beverages. We were supplied with a bag of cold brew coffee and a French press. Probably a pricey bag. I didn't get around to reading how to make cold pressed coffee until the next morning. First step: the night before let seep overnight in the refrigerator...That would have been nice to know ahead of time. Our hostess said she had no idea how to use the coffee as she was not a drinker. I need coffee! While I took my shower, Steve found some in town. I did bring my own wine to sip as the sun set.

That was the only morning I had time to run. I had noticed the neighborhood road was wide and smooth. I had a flasher on so the very few drivers could see me. Hard to see much myself as there were no  lights. Though we were surrounded by mountains, the valley there is fairly flat. Our hostess made a nice breakfast (no coffee!!!) with a huge fruit bowl, bacon and homemade bread. I saw a female Anna hummingbird flit around. I was hoping to see other kinds but alas, just Annas.

Onto Zion. We stopped at an information place which said we better get into the park ASAP to get one of the free parking spots. Otherwise we'd have to pay for a private spot in town. This also would have been nice to know in advance.  We scored one in the very last row.

Our senior parks pass came in very handy. We paid $10 a piece (though we can get by with just one but it is good to have two for insurance) 3 years ago. On this trip, we went to 5 National Parks and one National Monument, which would have cost us $150 total without the pass though younger folks can get an annual pass for $80 or travel with a fourth grader for free. We went to a few other National Monuments which did not collect a fee. We also visited 2 Utah state parks which did charge us. They give seniors a discount only if they live in Utah. Now the geezer pass is much more pricey so I am glad we got it when we did.

Zion is the third most visited national park behind the Great Smokies and the Grand Canyon. And again, though school is out, summer is too hot to enjoy it. The bus had about 10 stops in which you could take trails of various lengths. It was very pretty. Lots of foreign tourists with their walking poles though the trails were not steep in general (Bryce's trails were much more demanding). I do have to say that even on the modest climbs, the American tourists were huffing and puffing whereas the foreigners were in much better shape. I visited this park as a kid but all I remember was the tunnel and that I thought Bryce, also visited, was much more interesting. My father, a photographer, was quite obese and seemed to have a policy of never walking much more than 20 minutes from the car. Even with my dicey balance (thanks chemo!) I did well as I am physically fit but how many years do I have left that I can spend the days scrambling over rocks. Carpe diem.

We retrieved our car to go through the southern half up a steep pass going into the tunnel mentioned above. I thought the area east of the touristy sections were prettier though there were hardly any other tourists there. On to Kanab where my eagerly awaited glamping experience turned out to be magnitudes less glamourous than hoped.


And we were there for two nights.

Saturday, September 15, 2018

hummingbird wars

Hannah at her preschool with a light box

toad lilies


took Maya to the apple orchard on my running route. In the fall, I can smell the doughnuts for a half mile

lots of sunflowers

they had two pits of corn kernels

from two years ago in Sutton's Bay

For a few weeks before migrating, the hummingbirds try to fatten up as much as possible. But they become even more territorial chasing the others away from the feeders, which seems like a waste of energy as they will chase them some distance. Other birds of a feather aren't willing to share too but usually they will just nip at each other, not chase.

Still unpleasantly hot and humid. Even worse, we've had a bumper crop of wasps this year making sitting outside unpleasant. We have traps but they barely make a dent in the population. They make life miserable for  the hummingbirds too but we do have plenty of hummingbird friendly flowers for them.

We will leave for the southwest next week. Still a few annoying things to take care of first.

I went to another cancer survivor cooking class this week: subject being pasta veggie salads. Avoiding white flour products has been a mainstay of my diet program so I had to bend the rules a bit. They were at least healthy and low fat. We each tell a bit of our cancer story though some of us don't know how to make a long story short. There was no stopping this one woman from going on to the tiniest minutiae of her past 2 days, none of it had anything to do with cancer. But I did learn something from a new person who had the same diagnosis as I did, same stage and subtype. They have now added an additional chemo. The good news is that it's oral; bad news is that one can get some sort of hand and foot disease resulting in the erasing of your fingerprints.  I immediately looked this up. I can't see much of an advantage. They do use it for various types of cancer but obtain the best results from TNBC (what I had). They compared a group with it and without it who all free of metastatic disease at diagnosis but were in varying stages. Over 5 years: 70 % survival of non-Xeloda dosed patients; 76% survival for the dosed.  Too late for me now.

Drug prices keep going up, which was a topic of those still in treatment. My friend just started a new immunosuppressant  that costs $12K a month. As she can no longer work, she can't pay for it. The drug company will supply it but it took lots of paperwork.

Another trip to look forward to biking in Holland and Belgium this spring

Friday, September 7, 2018

Ten year cancerversary

The kids are back in school: Grades 5,3,2,1 and now kindergarten. Although she is young for kindergarten, I'm sure she is the tallest kid by far

my friend sent some ride photos recently. Me on a bridge to Ohiopyle. Years ago when I was pregnant with Josh, I walked across this bridge. It was missing railings and several floor boards

We recently went to a neighbor's tailgate in the biggest house in the neighborhood. Loved their fireworks hanging lights

Not only they have an outdoor bar complete with grill and TV, they have a pool, a putting green and a hot tub

Their indoor bar was quite nice full of high end liquors

All the kids on Labor Day

with our kids so 9 descendants

Wasp eating spider that fascinated our guests

Maya on the first day of school

Oliver, Tessa and Daniel

view of my flower bedroom

I went to get this but declined as it is too heavy, too beat up and too turquoise

got this stained glass mirror/jewelry holder instead

Allie excitedly waiting for the bus

They went to an apple orchard: one looks like a mini Josh, the other a mini Julie

no public school for her yet but she likes to pretend to write. Unlike her sister, she is a righty. One third o my grandbabies are lefties

Ten years have passed since a routine mammogram picked up a probable tumor. Such a shock! I was trying to question the radiologist whether there could be a benign explanation for this grape sized mass  that appeared on the follow up ultrasound and she would impatiently sigh that someone
would be so stupid to waste her time.   never saw her again.  The news kept getting worse. Unlike most breast cancers in women my age, I had the very aggressive subtype triple negative which meant chemo. I immediately read all that I could finding words like lethal, deadly, unfair that I was going to die at an early age. By the time I had surgery to remove the tumor, it had doubled in size and a new tumor sprouted. Thus I had to have a second surgery. Nowadays, they will immediately see if they have 'good margins' before closing you up but they didn't have that option then. I had a few sentinel nodes removed but they were negative though TNBC has a nasty habit of bypassing the nodes and spreading through the blood system so still a chance that it had spread.

Chances were that I was not going to die.  According to the computer program, I had a 50 % chance of surviving 10 years if I didn't have chemo; 70% chance if I did. 5% of women my age die before they are 65 of other causes. Still a 30% chance of dying didn't sound good to me and I obsessed about it nightly. And chemo was no picnic even though I was 'lucky' that I never had to be hospitalized due to secondary infections. I gamely tried to run until my red blood count was too low to carry enough oxygen for more than a long walk.  16 weeks of chemo administered every other Tuesday. * weeks of the 'red devil' that caused bloody noses, moth sores, constant queasiness and severe fatigue. Taxol caused neuropathic bone pain and some of my toe nails to fall off. I kept the fingernails but they were discolored and covered with lines.

A social worker once asked if losing my hair was the worst aspect of my stay in Cancerland? Not even close. Becoming bald was the cherry on top of a shit sundae. No, the unfairness of an early, painful death topped that. How nice would it be not to have cancer? How lucky everyone else is that aren't dealing with this? So my mind spun. And little things would upset me. People telling me that everything will be OK. Well nice sentiment but to me, it trivialized my condition. It seemed no one would look at me any more. Am I so hideous? I descended into a cloud of negativity for a year or so.

I lost my hair right before a Christmas party on schedule. Suddenly my hair seemed painfully heavy. I took some scissors and cut it short. Still it weighed too much. Such a strange sensation. My scalp was very sensitive. Water in the shower that was comfortable to my back would burn my scalp. And it was very sensitive to cold too. I got a 'scalp prosthesis' i e wig. Unknowing people would say that they liked what I did with my hair, it looks so much better. It's plastic.

Well I am alive. TNBC comes back sooner than later so I am well past the time of recurrences. Still whatever caused me to get it in the first place probably is still there so I am not completely off the hook for a new primary. I've had some false alarms which were so terrifying and expensive to follow up. I don't spend much time thinking about cancer. I do go to the survivor cooking class to make sure my diet isn't part of the cause. And almost 3 years ago, I had my chest reconstructed to correct some of the asymmetry and many cross-crossing scars I had. Still have some scars but you'd have to look at my nude body very carefully to find them. Bonus: I don't really need to wear a bra as I have a chest now of a 12 year old. And I am no longer fat so yay for that.

Summer continues to plague me with hot temps and humidity making running a chore. The kids are in school. Still need to completely plan our trip but I keep running into roadblocks.


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