Saturday, September 15, 2018

hummingbird wars

Hannah at her preschool with a light box

toad lilies

dahlias

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, aggressive...so 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.

Saturday, September 1, 2018

Let's go glamping

Not so long ago, I would only see turkeys up North and rarely at that. Now they are all over southern Michigan
Maybe they pushed out the pheasants as I never see them anymore. I often see a flock of them on my morning runs. Occasionally I can get one of their feathers

we took these Ivory Coast refugees to the Spray Zone yesterday

Will they get to stay?
my desert dahlia is in bloom. I have lots of dahlias though some are slow to bloom

my cousin has all kinds of sewing projects


I've spent some time this week trying to plan our trip to Utah. We do have the main route figured out, just how long to stay in each place remains a puzzle.  Do we just wing it?Steve would rather stay in boring chain motels so they only person he'd have to interact with would be me (begrudgingly at that) but often they are cheaply made (thin walls!) and if they do serve breakfast, crappy coffee and cereal out of plastic cannisters.

So far I got us in an Air B&B full of original art run by some woman who graduated from some fancy cooking school thus gourmet breakfasts and my favorite, a tent way out in the desert surrounded by huge red rocks run by a woman named Soltitisce. Is that hippy-dippy or what? We will have an outdoor hot tub, better to see the multitude of stars at night and an outdoor kitchen filled with organic produce and pancake mix. What no air conditioning?  said the reluctant glamper. I reminded him that we will be at high elevation and keeping warm will be more of a problem. What about my shower?I showed him a picture of an outdoor one. also our oasis is surrounded by flowers so hummingbirds are promised.

What is the difference between camping and glamping? As near as I can tell, we get a comfy bed versus sleeping on the ground. We did spend a night in a fancy yurt on Big Sur several years ago but this is a much smaller operation.

It is still hot out but at least the lower humidity is making my exercise more tolerable. And the mystery pain in my wrist seems to be gone so I can lift my usual weights.

Some of the Moms went with me to my favorite treasure store. Alas it was closed. It is a one woman operation and if she is gone, the store closes. I guess I should have called. But plenty of cute galleries and boutiques to browse so we still had fun. And then we had drinks and wine back at my house.

I've had various grandchildren on and off this week. And while their mom battles immigration, we entertained her kids. Various people I know have been helping refugees; my friend in DC sponsors an Iranian family; my friend the Cote Ivoirians, and my daughter's mother-in-law; a Syrian refugee who walked from Syria to Sweden to escape. I'm sure she has a good story.

And tonight we have been invited to a neighborhood tailgate party by an Indian couple. Do we bring anything? Do Hindus drink alcohol? Not sure. They have the biggest house in the neighborhood and keep expanding it. At least I will be able to satisfy my curiosity on what is going on there.


Monday, August 27, 2018

My charmed life

My fancy  sandals did come in from China earlier than expected. Now I want to get pumps before Trump raises the shipping charges

thrift store find: hand blown margarita glasses Too bad there are only 4

And a pair of mosaic vases

My friend invited me to lunch: homemade salmon salad, tabbouleh and baclava

We went downtown Ann Arbor, a place I haven't been in ages, with Josh's family. We had Maya for the weekend

Ann Arbor mural

the moms from our winery trip a few weeks ago

Naomi attempted to straighten Maya's hair. By the next morning, it was its usual giant afro

After dinner at a BBQ place, we went to a beer garden where the kids could run around. Hannah tries to imitate everything the big girls do

I am lurking over Josh's shoulder with my eyes closed

Steve's cousin's son is trying to make it as a professional photographer. I do like this of the Brooklyn Bridge

I was eating lunch the other day at my friend's house. She gave me a long look and told me how lucky I am: I can fit into size 4s, exercise at a high intensity for a long time, have great kids and grandkids, have a loving husband, have very little money worries, travel when and where I want, and have  good health. Yes she is right but sometimes I do have problems counting my blessings. Right now I cannot use my left wrist. I have no idea what I did to it but for now, weight lifting is out of the question unless I just want to use my right arm and get that popeye look.

One last week of summer.

I got up very early Sunday morning for a bike ride. There was no fog at our house, the lowest point of my ride. We are along a 2 mile long chain of lakes so the land is fairly flat. If there was going to be any fog, you'd think it would be here. But as soon as I started climbing out of our valley, I was covered in fog that didn't dissipate until 2 hours later. I have a flasher on my leg that can be seen from behind and a headlamp. I really couldn't see more than a few feet ahead. Worse was they decided to 'chip and seal' my favorite road, Seven Mile so it was covered with loose gravel and they hadn't painted the lines yet. There are stretches in which there are no lights for a mile or so, total darkness. I couldn't see where the road ended so I turned around and went back to 'my valley' until the sun came up.

I've been seeing friends and enjoying outside though now and tomorrow it is in the 90s. My run this morning was very uncomfortable due to the heat and humidity.

I really need to do more planning for our Utah trip. We got a route mapped out but trying to find more affordable lodging is a pain. 

Tuesday, August 21, 2018

Grandkids

A good friend is helping a family of African refugees. How to keep the kids entertained while the mom deals with lots of court visits? The girl, a sweetheart, is Tessa's age and the little boy, Allie's age

We took them to the sprinkler park near me  They enjoyed it


Daniel emerged from a 6 week premature infant to this 9 year old this weekend. He seems to be fascinated with maps so a globe seemed fitting. This one lights up at night to show the constellations

His parent were gone on his actual birthday though he had celebrations before and after. But this one is at grandma's


Jacuzzis are fun

I think they snuck some more bath foam into the water. Our soft water seems to make plenty of bubbles. Ginger blossoms smell so good

our house is the transfer point between shifts of custody

It is early in the morning. Normally I would be out with my flashers running or biking but I draw the line at thunderstorms which I hear outside . I am hoping for some lightning free time later in the day though I do have an elliptical trainer in our basement. But we need the rain so I shouldn't complain.

Summer is winding down, which makes me sad as I hate the cold winter months so much. I do enjoy relaxing outside in the early morning with my coffee. Days are getting shorter but my headlamp lights up the road just fine while I am biking in the dark. I was able to come back early enough the other morning before the eastern sun blinded the cars and me and in time to make buttermilk pancakes before the kids woke up.

I was running down a dirt road the other morning which was deserted as it is at all hours. A truck stopped besides me. I panicked as again, deserted road and what did this man have in mind but he said something about how he could see me really well (or maybe he couldn't see me...hard to say, I did have a neon light blinking) I wanted to ask him why he felt he needed to blind me with his brights but didn't want to annoy him.

A few weeks ago, I ordered something online from a Chinese company which very soon sent me an email to say my item was shipped. Haven't received it. Could I track it? If only I had purchased a tracking number in advance, which I didn't know was an option. I have since read reviews about this company. Seems like I will be lucky to get this. Should read reviews ahead of time, lesson learned.

How does my garden grow?  Well lots of spaghetti squash now and my butternut squash will be ready very soon. All of my many tomato plants seemed to have disappeared. I had harvested lots of tomatoes a few weeks ago but now the plants are gone. Some virus? Zucchini still is producing but the yellow squash seem to rot while they are maturing. My cauliflower is hard to get at and now most of it is overgrown. I thought they were brussels sprouts plants which I put in the middle where I wouldn't need to get to them until everything else was dead.

Thursday, August 16, 2018

ghost bikes

these have been popping up over Michigan. It denotes where a bicyclist was killed. Some drunk in Kalamazoo managed to kill 5 cyclists at once and maim several others
I did buy these two in a week of splurges (I bought some fancy sandals on line that better fit). The lower one is green amber set in silver. Need to find a uv light to see if it's real

I love delphiniums but this year has been tough on them. Got these purple ones finally but I miss my bright blue ones

this hibiscus will need to come inside for the winter

my head pot is filling up

no matter how many seedlings I destroy, a few always manage to survive They are pretty

From my cooking class: meals in a bowl. One's starch, veggies and protein are put into one bowl. This is the burrito bowl, beans, rice, tomatoes peppers, avocado topped with greek yogurt

We had two other bowl meals: bulgur wheat topped with swiss chard, mushrooms and an egg and a Greek salad over quinoa

As it is still warm, I am still exercising before dark though today I was caught up in an earlier than forecasted rain. I am hoping that all my lights will save me from being a ghost bike and that drunk drivers tend to operate at night, not in early morning.

Due to my travels, I had missed some cooking classes. This time my friend was strong enough to make it. While the food is prepared, people tell their cancer stories. A lot of tears last night. One not so nice aspect is 'my tumor is bigger than yours' syndrome. A person would say they have lymphedema on one side, another would pipe in Oh you're lucky, I got it on both sides. One person actually told another she is lucky that her cancer wasn't as bad as this one's cancer and used the word 'lucky'. Lucky isn't how any cancer patient feels. Yep there is always someone who was dealt worst cards.

Someone's spouse is dealing with stage 4 lung cancer. Were they a smoker. No but are they deserving of less care if they were? What symptom sent the wife to a doctor? Coughing? Difficulty breathing? None of that. A headache. The lung cancer, not immediately diagnosed, had already spread to the brain.

People are always wondering what gave them cancer. Pollution? Bad habits? Bad genes? Bad karma? My friend, who I like very much but I do not share her religious beliefs, sincerely thinks she asked God for it. Her father had cancer (4 times now yet he is in remission now) and it caused so much stress to all involved that she prayed that she have it instead as she could deal with it. So his cancer went away and she gets cancer instead. Dad's cancer is treatable; hers much less so. And meanwhile, her mom has pancreatic cancer for one month before dying. Who asked for that?

I had Shanna's kids today. Screens keep them entertained but is it healthy? I will have them for longer Saturday.

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