Tuesday, September 29, 2015

Rules of engraftment

Of course zillions of blood moon photos on the net but this one taken by Tim Durkan of Seattle was my favorite

Naomi's art. I have this labeled with the year she was in first grade but as she signed it in 'cursive' which is no longer taught, I am assuming she was older
I woke up today to see an enormous full moon filling up my window. By the time I got my glasses and my camera, it was hidden under clouds. Maybe it was a dream.
We had planned to go to Grand Rapids today but rain stopped that. It should be dry tomorrow so off we will go.
Did my friend's stem cell transplant work? When they start to see neutrophils, it means that the new bone marrow is making them. This is called engraftment Usually this takes 14-20 days but my friend has them after 10 days. She gets platelet and red blood cell transfusions but has to make her own neutrophils. Her mouth and throat ulcers are finally not hurting so much so she can eat. They might release her from the hospital earlier than planned if her counts keep going up. She still is at great risk for infections and still could get graft-host disease but that is less common from a related donor.
Interesting transplant trivia (to boring me at least): if you have a choice between a brother or a sister, choose the brother as your sister, if she ever has been pregnant, might be packing some dangerous antibodies developed in response to her fetus. My friend 's blood has the DNA of a man now. I am surprised that crime shows haven't used this as an interesting plot twist. She will no longer have her particular allergies but she will have her brother's. All the antibodies she developed from childhood vaccines are gone. She will have to have new vaccinations.
Another person from our class needs a stem cell transplant ASAP. His two siblings are not matches. Although he is at least 10 years younger than my friend, chemo has weaken him considerably. He will have an even bigger battle than my friend.
From my garden, I made an omelet packed with red peppers, chard and tomatoes. Yum. I would have Brussels sprouts by now if I hadn't grown the plants so close together. I will know better next year. But I am a star at growing chard, kale and tomatoes.
Finally it rained after almost 10 days of dryness. I thought my hummingbirds were all gone so I haven't been changing the nectar regularly but I saw a lone female on my petunias.

Monday, September 28, 2015

Super Blood Moon Eclipse was a Bust

Allie's birthday party was next to a playground

The boys spun around in this dish until they were sick

Allie driving a police car She could turn on the flashers and sirens
My resident frog likes to hang out on the fake water lilies

yellow roses are in bloom here
her big birthday present: a trike though she can't pedal it yet

Julie's uncle came to the party in a restored 1963 police cruiser

I have had bad luck observing rare astronomy happenings. I miss rare comets, meteor showers, Northern lights and now the rare super blood moon eclipse. It was supposed to happen at a reasonable hour: 10 pm or so. A friend and I stayed up late on our porch drinking wine waiting for it but after a week of perfectly clear weather, there were clouds. Even my friend en route to see her sister for the very last time, could see it from the plane.
Allie's party was in a local park on top of a former landfill. No alcohol was to be served in the shelter. Just down the hill, the county sheriff had a substation and would swing a car through every once in a while. The presence of our forbidden booze made Josh nervous. A cruiser pulled into the parking lot. He thought Oh great, now we are going to be busted! But then I noticed that the cruiser looked to be about 50 years old. Certainly their county could afford more updated  cruisers. Years ago, we had this same Plymouth station wagon though  ours was cream colored and probably a 1959 model. Julie's  uncle once was a cop and thought it would be fun to restore an old Detroit police cruiser.
Allie enthusiastically unwrapped her many presents with the kids crowding around her. Someone had gotten her kid sized cleaning supplies: a broom and dustpan in pink. This made Tessa super excited. Who would have thought that cleaning supplies would bring so much joy? For my girls, I avoided things like this and all the frilly pink things. What kids do not want to see are clothes unless they are tutus or some kind of costume.

Sunday, September 27, 2015

Fall gardens

We will be celebrating her 2nd birthday later today. Her hair is finally growing

Big sky from this morning's bike ride
Botanical gardens orchids

Not many trees have turned yet but this bonsai maple has
This place is a monarch sanctuary with lots of milkweed. Should have gone there a month ago to take photos of the chyrsalises
autumn crocus: should buy some bulbs to have my own
Steve wondered why I was taking a photo of a deformed zinnia when there were perfect blossoms nearby
dragonfly on a marigold. Marigolds are supposed to repel insects

Beetles on milkweed sucking up that oxalic acid. This same bitter acid makes monarchs yucky tasting to birds

Indian summer still goes on though it will come to a halt sometime this week, inconveniently during our annual pilgrimage to Grand Rapids for ArtPrize. It has been great for running and biking. The downside is that gardens need to be watered and those nasty stinging insects have thrived. It is hard to go outside and not be bothered by them. Currently I have a stinger embedded in my chest. I assumed that I reflexively swatted a wasp at the pumpkin farm the other day but whatever it is managed to leave a stinger in me so I am guessing honeybee. Never saw it. We have put up  2 wasp traps: bags containing an attractant that lures them to their death though some do escape it. Both are filled with various nasties including several bald faced hornets and smaller wasps.
Steve and I decided not to sit around all day as so often our custom. A walk at the Botanical Gardens, shopping for a nicer dinner and then to the Deluxe thrift store that has high end stuff versus the shlock found at some. I didn't buy much, a nice frame that I will put the Allie on a Pumpkin shot in (or maybe Tessa on a pumpkin) and some handmade jewelry for charity.
I have to start later and later every Sunday on my bike ride meaning more car traffic. At least the sun wasn't in the driver's eyes on my short due east portion. I am getting faster, both biking and running but then in December, I will have to stop.
We will celebrate Allie's birthday later this afternoon 2 days early. Allie had requested a purse and Steve had selected a very cute doggy purse. Shanna noticed it unwrapped on our table: she had bought the exact same purse. Eventually one of the other girls will get this for X-mas. We have other gifts for her.

Saturday, September 26, 2015

Drowning in ones bed

May she rest in peace
juniper flowers?

My childhood friend's sister died last night. She was 54 and left 2 children, 13 and 15.I had written before that she had metastatic cancer with no primary tumor so they didn't know how to treat her. The first physician thought she had lung cancer with mets to the bones. She went for a second opinion at an alleged top rated cancer center who after many tests thought it was not lung cancer but breast cancer that had spread to the lungs. No breast tumors were ever found. Biopsies (3!) of various tumors in her bones were inconclusive and she was sent 
 home to the original doctor after giving her radiation and surgery to deal with the bone tumors, one of which was on her spine. A biopsy of a lung tumor showed it to be lung cancer this week though they were still doing genetics on it to see if it was of the type that some of the newer treatments could specifically target. They installed a port to begin chemo next week.
Fluid began to accumulate yesterday in her lungs (pleural effusions?). The hospital drained this fluid and sent her home. After being home a few hours, she began to feel bad and asked her husband to go get something for her at the drug store. By the time he returned, she was dead. Why did the hospital release her without warning that the fluid would return? Maybe they did. Maybe she knew what would happen.
It is Day 8 of my other friend's new life. Day zero is the day they receive the life saving stem cells after all of hers were destroyed. All of her digestive tract is covered with open sores so painful that speaking, swallowing and eating are out of the question. Her messages to me consist of all the sad emojis that she can punch.
So should I complain of the minor (by comparison) annoyances here?
I think not.

Friday, September 25, 2015

Back to the farm

  On this beautiful day, we went back to the pretty pumpkin farm with Shanna and Tessa.
Below she is buried in corn

Thursday, September 24, 2015


watercolor miniature

hand made raku tile 25 cents
25 cent pot in middle will be filled next year with a miniature plant in my clay village
miniature plants purchased for clay village that turned out too big Cute flower basket might be useful
A card stolen from someone's blog. The bumblebee was a metaphor for her life: science says that bumblebees can't fly as the aerodynamics are wrong but yet they fly anyway due to their superior determination. She was determined to cure her leukemia 'naturally' . by not going through traditional chemotherapy and a stem cell transplant. Rather she prayed a lot and ate healthily thinking that 'toxins' she had consumed in the past (sugar, meat, dairy) gave her leukemia in the first place. The prayer did not work.
IMHO whoever calculated that bumblebees shouldn't be able to fly did their math wrong. I have been going though leukemia blogs (Being cancer conveniently stores lots of blogs by disease type; mine is in there) to find some good ones that will give my friend hope. Once she gets stronger, she will need more stuff to occupy herself in her isolation. So far, the reporter Robin Roberts story is the best. She was roughly the same age as my friend when she had breast cancer, the chemo gave her MDS leukemia (which turns into deadly AML leukemia if ignored). She received stem cells from her sister that saved her life and she is fine now. Robin was very fortunate to have a sibling match because finding one outside her family in the African-American community was only 20%. She wrote a book about her experience. Her mom's motto: Make the mess your message.

Bumblebee's story initially sounded promising. She was the same age as my friend when diagnosed with MDS leukemia. She initially did do chemo to go into remission. She was told that this remission most likely will be temporary but she chose to believe that she could make it permanent by prayer, healthy living and lots of travel. I kept on reading even though I would not recommend this one for my friend other than as a cautionary tale for not taking Bumblebee's road because she was an excellent writer. She went to several very expensive holistic treatment centers whose philosophies just made me shake my head. Towards the end, she was quite neutropenic (no white blood cells) and  running a fever. Traditional medicine would say, run to the ER, get hooked up to iv antibiotics to kill the  infective organism because your body can't. Holistic practitioners  told her, don't seek medical attention; the high temperature was actually a good thing killing the organisms, blah, blah, blah.

Then I came upon a young (18 year old at diagnosis) physics student who writes well and amusingly. She is now Naomi's age and survived her transplant from a non-related donor but is sort of in a no-man's land as some of her bad bone marrow remains (should be 100% donor; not 96%). She is kept on maintenance chemo to suppress that 4% from growing but the chemo is making her miserable. She can barely climb stairs as she is so weak (again, Naomi's age). Should she risk getting off the chemo so she can have a normal life? There is no guarantee that the chemo will keep working and there is a chance that the 4% will never take over and she will be fine. Won't recommend this as I don't want to scare my friend with this what-if.

Then there is the upbeat young man who did survive with lots of infections post transplant. He 2 years later is fine but details all his fellow transplant patients who didn't survive from his unit.

I'll keep looking and meanwhile buy Robin's book.

A beautiful Southern California day(only in Michigan) again. Hardly any fall colors here due to the nights being well above freezing. I have not seen my hummingbirds today so maybe they left. What signals their departure? Temperature? Length of day? The boys left 3 weeks ago. I did see one in late October (right after my 2nd surgery for cancer) but I guess they are rarely here in October.

My odometer died due to an expired battery. I finally found the instructions buried deep in one of my many junk drawers. It said the computer's battery only lasts a year and the sensor's battery lasts 7200 miles. Weird units. I just replaced the computer's battery but everything needed to be reset and I was afraid I screwed that up. Gone is my total distance reading of 2376 miles (I have ridden 90 miles since then). So I checked the new odometer reading versus my GPS and I think it is OK. In the past, the odometer read about 1% low but now it seems a bit high. Hard to tell. Every 5 minutes, the GPS app announces how far I've gone and what my current speed was but the info is about a minute off (in that minute I could go .2 mile) The other day while I was slowly chugging up a hill, it said I was going 19 mph. Well maybe I was 2 minutes ago. We have a 2 mile  absolutely flat stretch near my house that goes through a series of lakes and streams so on that stretch, it is easy to go a consistent pace so it did seem the speed on the odometer matched what the app said. So I did a nice ride today stopping at the every other week barn sale where I got the miniatures. I had hoped to see Shanna and Tess today but Ms. Tess doesn't feel well. Mybe she'll be better tomorrow.

Wednesday, September 23, 2015

Young Fives

view from top of fancy paper weight by the artist Karg

sideview. Camera doesn't know where to focus and you can't see the dichromatic glass
Maya showing off her ring ability
in her school's library

Young Fives is a relatively new program which turns kindergarten into a two year program especially for those who are born late in the cycle. Both Maya and Daniel have birthdays making them eligible for the program though they went to it for entirely different reasons. I saw a list for about twenty things Maya should master by the end of the month. Among them:
  1. Count to 35 (she more or less can count to 15)
  2. Count backwards from 10
  3. Recognize both capitals and lower case letters of the alphabet (about halfway there)
  4. sort coins by color, size and thickness
  5. make up a repeating pattern
  6. draw correctly the 6 major shapes
Can one flunk prekindergarten? Again, when I was in kindergarten, we were doing good to know the alphabet and being able to count. Making things worse, they think she has ADHD. I think they are right. The school had an Open House the other night in which the classroom teacher discussed the classroom's goals. When I was a parent, kids were invited to these but apparently, this was for parents only. So I entertained Maya while Naomi stayed in the classroom. I tried to read her a book. The other 4 grandkids listen attentively (though now Oliver thinks he is too old for this) when they are read to but Maya's eyes dart all over the place looking for something else to do. So I took her to the playground. She has therapists for her speech and fine motor skills, but her large motor skills are quite good. She proudly swang from ring to ring. She loves her teacher and quickly makes friends.

We have a week of Indian Summer consisting of cool nights and evenings and pleasant, sunny dry days. If only the weather could be like this all the time.

Sunday my friend and I sat on my porch until the sun went down in a blaze, sipping our wine before finishing Orange is the New Black. Very unsatisfying ending.

Yesterday I brought my friend who had been in the hospital for over 3 weeks home. I tried to convince her to come to my house where I could watch her more closely. Plus my house is easy to walk around and has easy access showers. She was denied rehab and is very weak from numerous complications. She does get a couple of weeks of daily nurse visits. They will only go to one address. Most of her friends today are observing Yom Kippur so they will not look after her. I hope she is not fasting as she is much too weak. Checkout took forever (more than 2 hours) between waiting for staff to give her last minute instructions and then the pharmacy messing up her prescription, which took forever to fix. She was totally beat. In her absence, her street was ripped apart. I narrowly missed being crushed by an earth mover by a man who thought I had no business on that street (only way to get to her house). Her nosy neighbor of course popped up (she had been a housemate of both of us 40 years ago and we really didn't get along)to tell me that if I was looking for my friend, I am out of luck as she has been gone for a month. I reminded her that I rarely visit without an invitation and that I have my friend in my car. If she were a normal, responsible person, I would have asked her to look in on my friend who definitely needs tending but past experience indicated she is much too self involved to be bothered by that. Besides she has to water her plants one by one with a little cup (hasn't she heard of hoses or at least a big watering can?) and has her own health issues which she will share but I beat a hasty retreat.

Last night, a trip to a Southwestern restaurant with former colleagues. I was disappointed that we didn't sit outside but some of us didn't have warmer clothes for when the sun went down (earlier and earlier). This was the restaurant I had a fainting spell while dining outside with my California college friend which I still don't understand other than when I am in pain, I faint. No thanks to nerve damage due to cancer treatment, occasionally I will feel like my rib is broken and then the pain just goes away. This happens very infrequently now and the pain isn't as bad as some of my earlier attacks. But that night, I couldn't finish my dinner as I thought I was one moment from collapsing onto the ground. I also have fond memories of that restaurant. More than eight years ago, I was having brunch with Shanna who informed me that Ramy was much more than a friend. I had chicken poblano chile rellenos and a mojito that seemed to lack rum. Tasty food. The drink? Not so much. It was fun and nice not to be stuck in a house by myself so much of the time.

My friend who received a stem cell transplant last week is now back to texting me. Although the transplant went well, she is suffering from mucositis from the chemo totally destroying the lining of her digestive tract. Apparently it is very painful. I had a mild case of it from the Red Devil, mainly mouth sores. She is in total isolation and will be in the hospital at least a month.

And my childhood friend's sister who was missing a primary breast tumor for her presumed metastatic breast cancer still does not have a diagnosis except of metastatic cancer, unknown origin. They tried 3 times with tumors in her bones and spine to get a positive ID . Now they are going to biopsy one of her lung tumors (they are suspecting now that she has lung cancer, not breast cancer) and hopefully get a cell type so they can appropriately treat her.

Monday, September 21, 2015

Seventh cancerversary reflections

Reflection of a beautiful sunset last night

Another cancer anniversary come and gone. I had forgotten it but someone on the
TNBC page posted that she was just diagnosed with her 3rd recurrence on her 7th
cancerversary and it was about the same date as mine. She was one of the victims
 of Dr. Fata, a local physician who bilked insurance companies and Medicare of
millions of dollars treating people who did not have cancer for cancer and
undertreating others through sheer incompetence and greed which contributed to
her many bouts of cancer as the first appearance was not treated correctly.
This is my post on my second anniversary. Most of this is still apt though I have
 since graduated from seeing the oncologist.
Cancer is odd and for me it is not what ‘someone else’ deals with and until you (your spouse, child,
parent) have it you truly do not understand the magnitude of the diagnosis. How the world/your world
will stop and struggle to start going again. The usual statements “I know so and so who had it and the
y are fine”, “I will pray for you”, “You are young or strong or maybe both don’t worry”, “Modern
medicine is so advanced aren’t you lucky”… sometimes cut like a knife or become flotation devices
 in a stagnant pool of pain. They don’t make you feel better – they often make you angry – annoyed –
frustrated – you may even wonder how these people could actually think they are helping. But it is in
 this that you /we /I need to realize they are as lost in dealing with this and just want to offer whatever
 measure of hope, faith or love they can at a time when much of this is lost.
From diary of a mad white cancer patient

It was two years today that a routine mammogram detected my tumor. Even though there is a huge
 false positive rate, I knew. I knew an hour before I had the first set of scans..followed by more...then more
..then more. Finally an ultrasound and a meeting with the  previously hidden radiologist, a woman with
 absolutely no social skills who sighed impatiently at all my questions. How did I know? I had no
symptoms. I had a 'false' positive in the past and they had watched the suspicious area very closely
 for years but this was in a different area. I felt a chill, a feeling that no..this will not be good and I am
 not immortal. I felt this same chill recently concerning an entirely different matter and I was right again.
Yeah I am Suzie Scientist governed by logic, not hunches or chills of insight. Usually.
 I tell newbies who find themselves suddenly in Cancerland that the worst that they will feel is i
n the beginning: the terror of the unknown, all the what-ifs..the main what-if being Am I going to die?
The world continues to revolve around despite you. Things need to be done. The mind spins uselessly
around with what did I do to deserve this? I get my answer the first day of chemo when I am in the
bed right next to the pediatric unit: maybe I may be deserving of cancer but these children are not.
In general I received good care from the best of the 3 arms of the triathlon I had to complete
: Slash! Poison!Burn! I read and question constantly. There are a few aspects of my care (and of
my cohorts in this battle) that I think is deficient. There are some myths about cancer that the
 powers that be (probably more legal than medical)continue to parrot:
Belief in this justifies delaying treatment. A few months here or there shouldn't hurt, right? Well in
 the month between detection and surgery, the tumor doubled in size and also a new tumor appeared.
 I went from Stage 1 to Stage 2. My prognosis worsened considerably. The biopsy showed that I had
 a very aggressive subtype..why didn't things move faster?
More than half of the people in cancerland I encounter, in person or in blogsphere, report pain. Some
 delayed treatment because their lesion hurt so it couldn't be cancer, right? Wrong. After I was
 diagnosed, I did notice an itchy feeling, a very mild pain. Was I feeling this before? I don't know.
 I have, as most women in their fifties, minor aches all the time.
I received the current standard of care for my particular subtype of cancer. What this is very slowly
evolves. Thirty years ago, standard care regardless of the subtype of cancer, even if it was in situ, was
 a radical mastectomy. Then it was if the tumor was below a certain size and no nodal involement, a
lumpdectomy followed by radiation. Chemo is now recommended for large tumors or ones having a
high grade, such as mine. Even though it did not appear in the nodes, there was a 50% chance that it
spread through my blood stream. Chemo would reduce the chances of a distal recurrence to 25%. The
median time for a distal recurrence to be detected is 18 months. It is now 24 months. What are my
 chances? Are they now halved? Aspirin, in a very uncontrolled study, reduced chances of recurrence
to 50%. Is it going to reduce my chances too? I hope. Is Adriamycin truly useful for TNBC? The jury
 is out. Should I have been on Carboplatin instead? Maybe. Did I take a big risk on insisting on the 3
 week Canadian study of radiation which was not studied in TNBC. They gave me higher rads in a
 shorter period of time. Maybe this will be found superior to TNBC.
I felt miserable during chemo but I know I got off lightly. I didn't need to be hospitalized. I was able
 to watch Naomi play bball. I was able to exercise though not at such a high level as before. My mind
 went into all sorts of dark places.Four months of being poisoned is a long time and it was hard that it
 occurred in the winter when I am not the happiest camper anyway.  Sometimes I felt forsaken when I
wasn't. But in general, people came through for me especially Steve.
Did I learn any big lessons? I know I should have learned not to sweat the small stuff but I still do.
Part of me still has cancer on the radar screen but it is a very small part. I am supposed to show up
there every 3 months to be monitored. What does this consist of? Asking how I feel and then
checking for a local recurrence and then me paying $150 that is not reimbursed. I didn't show up
last month. I will go for the mammogram however.

Sunday, September 20, 2015

Pumpkin farm

Grandma and Allie

Pumpkins of different colors
cider served in pumpkin cups. Allie licking donut sugar off her hand

They a track full of riding tractors

Sweet blue eyes

Outside the farm. I ride by this on most of my Sunday rides. They usually have attractive gardens

lots of Halloween stuff

And a train ride with Grandpa

A corn pit

3 little pigs

big pumpkins

Oliver has been busy losing teeth

she kept going back to the tractor even though she doesn't know how to pedal yet
A beautiful, calm sunny day. Perfect for biking; perfect for visiting the pumpkin farm.


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