Losing Mothers and Keeping Life Open

I woke tired this morning, after a deliberately early bedtime and a seemingly comfortable night’s sleep.  It was a struggle to be ready in time for the 9 a.m. expected arrival of a workman, but I made it, and was disappointed when he did not.  He appeared two hours late, bringing a helper so that he could finish the task of washing my house in one day.  My brick-and-siding exterior was begging for that pressure washing and soapy scrub after four years of sloppy rain baths. 

I was also begging for something – what?!  I forced myself to put some things in the Pod, finish laundry, clean up the kitchen.  After some restful time on the couch watching Milk and knitting chemocaps, I gave in to a nap.  I am still tired.  The flare, barely disguised by a modest prednisone increase?  I’m seeing my rheumatologist tomorrow, then getting my first of two chemo doses on Wednesday.  This cycle will move on. 

Last June I talked about the loss of mothers that my daughter’s group of friends has sustained (https://essiewb.wordpress.com/2008/06/08/post-mortem/), and today we’ve hit another of those days.  We heard about the loss of another mom from our old neighborhood and her high school group, as well as the grandmother of a good friend of hers.  I think I pointed out before that the parental losses she has witnessed have been overwhelmingly mothers, with only the rare father dying.  We have no explanation for this. 

The other explanation I don’t have is why they are gone and I am still here.  I have 17 years of lupus behind me, marked by a distinct improvement over the past year when I began rituximab treatment (the B cell killer).  Most of the women we lost were affected by such acute conditions, or by relatively short illnesses with fatal courses.  For the second time in my life, I feel that I’m still here for a reason. 

The first time I was overwhelmed with this feeling was when I was a medical resident rotating through the bone marrow transplant unit.  At that time, mortality from the procedure was 50%, and the patients were all younger than 40.  Children were coming to the hospital, staying long enough for me to become attached (weeks, sometimes months), and then dying.  I had one special buddy who was a preteen girl that I visited when I was on call.  I recently found a card that she wrote me after her discharge, thanking me for a hamburger I brought her on a slow night.  She died soon after, and I felt galvanized to work harder and throw myself into my clinical career.  I had to work “extra” and be better to make up for the dying children. 

Now my feelings about being spared are different.  There’s not the notion that I must make up for someone else, but that there are fruits of life I am to experience, good things.  I am not complaining about my life, or saying that I’ve earned anything better.  It’s just that somewhere inside me is the feeling that the best is yet to come.  Maybe it’s just my innate hopefulness and optimism, but I’m keeping my life open for it. 



the war escalates

i hit the wall today.  no caps because my fingers are stiff and sore and it takes extra reach and force to hold down the shift key.  my wrists, shoulders, elbows, ribs, hips, knees and feet also hurt.  my cheeks are red and hot to the touch.  my feet are so stiff that i have to grab for support when i first stand.  yesterday i could feel the heay artillery of the b cells really pushing me, and i increased my prednisone.  doubled the steroids, in fact, from 7.5 to 15 milligrams per day.  it’s not a big dose, but is a relatively large increase.  today started rough and stayed rough.  can’t tell the steroids have done their work. 

this makes a weird dilemma.  i can either ride this period out with increased steroids-much more than i’m taking today- for the time until my treatment next month, or i can request earlier treatment.  my rheumatologist isn’t thrilled with every four months, and probably won’t like making it sooner.  the oncologist, however, told me i should be treated when i needed it, and i think i’m the definition of “needing it” right now.  hmmmm.

i don’t want more steroids for five minutes, much less three or four weeks.  guess i’ll make the rounds and see what the docs say and if they can agree.  i hate making the rounds when i’m sick.  doctor visits are so much easier when you’re well. 

i’m temporarily putting down my other projects, including the recycled cotton fingerless mitts i started yesterday.  i’m making easy crocheted chemo caps so i will have goodies for the unit when i do go for treatment.  i hate to go to a party empty-handed. 

this evening i had dinner at a newish thai restaurant named ‘rain’.  the green curry was so lovely i wanted to take a swim in the bowl.  it had veggies which included frozen peas and carrots, and wonderful tofu that was perfectly fried.  i didn’t mind the frozen veggies.  the cute little diced carrots took me back to my childhood.  i could probably use a supply of them right now; slicing and dicing isn’t going to be easy with these hands. 

dinner was a send-off for my niece, who is moving to chicago so i have a good city to visit.  yes, it’s all about me.  actually, she is moving to solidify a relationship and enhance an incredibly well-rounded life.  i admire the versatility and foresight of people who embrace a variety of roles and trainings, and work so that one overlaps another and another and they all interact.  if it’s not too hectic and far-flung, it must be very fulfilling.  i’ve never felt that i was a unidirectional, narrowly defined person with a single, immutable focus. 

after dinner i had to pass the mall to get home, so i stopped to purchase elastic thread to use in the occasional knitted piece.  the store was closed.  i returned to my car and drove to the next craft store.  i borrowed a handicapped parking space, trudged to the door and through a million other craft areas to the back of the store.  no elastic thread.  i was frustrated by the difficulty of the task, the energy drain and pain from walks that would ordinarily have been easy. 

at home now, i lack the drive to clear off my bed.  i’ll sleep with a pile of paperwork, a knitting bag, my computer and a stuffed animal on my bed.  not that it matters.  that side of the bed has no inhabitant.  might as well make good storage space.

i’ve got good books and lots of yarn.  i think i’ll need them for the next little bit.


…and Poof, the B Cells Disappeared

In front of me I have two chemocaps.  Panda Cotton cap: 

Panda Cotton is 59% bamboo, 25% cotton, 16% elastic nylon.  Knit on size 2 circulars with two sets of ribs at the bottom and a spiral crown.  It is so soft and fluid, beautiful stitch definition.  My in-laws’ friend should be comfortable even if his scalp becomes sensitive. 

Crystal Palace Poof cap:     Knit on size 8 circulars, all garter stitch.  Gorgeous eyes belong to the daughter.  She makes everything look charming.  Poof is nylon microfiber, washable and soft to the scalp. 

I finished the Panda Cotton hat tonight.  Absolutely love it.  I might have to make one for myself.  All my knitting work today went into this hat.  I’m ready to pick up something else now. 


I was hoping to get some photos of tomatoes tonight.    I took the camera out in the dark. This is a cluster of six on the Black Plum plant.  They are approximately two inches long now, but still no hint of red on this bunch.  The ripe ones stay dark green on one end, and the inside is very dark green, almost black.  Very pretty. 


  This photo shows the largest of the tomatoes right now.  It is about three inches in diameter, and continues to grow, despite quite a few dead leaves surrounding it.  This plant is one of two that seem to be dying, but the tomatoes keep on coming.  As photos, these are the pits, but they do illustrate my undying affection for my readership, that I would risk my limbs to voracious mosquitos in order to document the fruit that I’ve been discussing. 


I know that you aren’t hanging on for my photography anyway.  It’s my utter ruthlessness in taking the machine gun to those B cells and calling a funky immune system a funky, malfunctioning immune system!  I’m such a peaceable person otherwise.  When my daughter was little, she would tell me “Mama, you have to tell me that you’ll kill me if I do that again.”  She wanted me to threaten her like her friends’ parents threatened them.  I couldn’t do it with a straight face.  When you hear me say “I’d like to slap him into next week” I am expressing a totally cerebral feeling.  I’ve only had one physical fight in my life.  It was in sixth grade.  I was surprised, attacked in the girls’ bathroom, and I didn’t have a clue how to fight back.  Ouch.


Thanks for the good health wishes.  I am even dreaming about being healthy.  Last night I was at work, knowing that sooner or later I’d be sick again, but determined that I’d do clinical work.  It was fun until an elderly lady pooped on the exam room floor.  Sigh.  Must have been a warning to stay home.  Not that I ever had that experience in my office. 


I have enough to do at home, for goodness sake.  I hope no one is reading through posts, counting the projects that were mentioned and then never showed up again.  For instance, at family reunion I’m going to encounter the niece for whom I started a cotton blanket in January.  The blanket is only half completed.  I’m going to take some of the Cozy Cotton with me and knit like crazy, so she will see that I truly have good intentions.  Dayna has been using her blanket at home, and it makes me feel wonderful to see it loved and used.  I want the niece to have hers before the next school term starts. 


I am rambling.  And yawning.  And, so sorry, one eye is on Jessica Fletcher in Murder She Wrote. 


Number Two Hundred: Bad Yarn and Good Family

It’s just after midnight, and there’s a full moon on Murder She Wrote.  My day has been splendid.  Prednisone kept me awake until the wee hours of the morning, so I slept late today.  I actually had breakfast and went back to sleep until almost lunch time.  Afternoon was spent talking with my daughter and son Julian, and a friend that he brought over.  Julian is known for bringing home the sick and injured, and this young guy presented me with a swollen ankle to examine.  After his unofficial medical visit, we all sat in the kitchen talking.  Suddenly it was 5 p.m., time for the guys to drive on to Atlanta and for me to get some work done.


As they got ready this afternoon, I found myself further proving that-in one way, at least-I have become my mother.  Until the last five years, I couldn’t leave my mom’s house without her loading me up with whatever she had bought in bulk in the previous week.  Sometimes it was paper goods purchased in a truck sale at the commissary, sometimes canned goods, occasionally something I had enjoyed eating at the house during my visit.  She was capable of showing generosity in that particular way, making sure her children had provisions.  My son left the house with a bag full of toilet tissue and a six-pack of mac and cheese boxes, with an extra-large cannister of raisins for snacking.   I felt more secure seeing him carry out those items.


As I’ve been discussing, I’m finishing chemocaps to donate.  Tonight, having finished one of my most beautifully crocheted ones, I turned to one of the ugliest balls of yarn I possess.  I don’t know why I bought it; my monitor must have enhanced the appearance of the photo.  I couldn’t possibly have purchased it in person.  Crystal Palace Poof (see it here:  Crystal Palace Poof Knitting Yarn at Yarnmarket) is 100% nylon, a braided thread with a continuous puff extending from one side.  Mine was a blush pink with black tips.  What was I thinking?!  Anyway, I knit a puffy cap from it.  It’s finished, but I haven’t sewn the back seam.  I grew frustrated with the way the puffs catch each other and put it down until tomorrow.  I will try it on my daughter and see if it merits being a gift for some patient with a zanier personality, or if I should just put it in the Goodwill bag. 


Speaking of gifts, and yarn, I packed a box for the prison knitting project in South Dakota today.  They teach prisoners to knit, and the students knit things to donate to needy folk on reservations.  Recently the program has been completely out of yarn.  They rely on whatever knitters will donate from their stashes or leftovers.  I donated some Knitpicks Crayon in a color that I over-bought (bright, bright yellow, okay?), and some white acrylic baby yarn that I used when I first started knitting regularly and quickly abandoned.  I’m happy that there is someone who will put those to good use.  The program doesn’t use novelty yarns, else the Poof would have been the first in the box.  In case you feel moved to donate, the address is: 

Elisabeth Robinson
Prison Project
XRX, Inc.
1320 S. Minnesota
2nd Floor
Sioux Falls, SD 57105


Several days ago, reporting on my road trip to Apalachicola, I noted the purchase of a left-handed kitchen utensil for one of my sisters.  She followed my trail to the post and actually left a comment yesterday!  Miracle!  Actually, I shouldn’t tease about her being too busy to read my stuff.  She is principal of an urban Catholic school in a poor, gang-ridden neighborhood.   In her first few years there, she turned the school around, and now it produces students who are consistently recruited to the best high schools in the city of Minneapolis.  I have admired her work for years.  She has students from culturally diverse backgrounds (African American, Native American, Hmong, Vietnamese, Hispanic, Somolian…) and has developed a curriculum that affirms their cultures and produces strong, capable students.  When I google my sister, the list of press and notices of achievements is awe-inspiring.  This is what the Basilica of St. Mary in Minneapolis says about her school in their July 2008 bulletin:

Ascension School was started in 1897 with three Sisters of St. Joseph teachers and 160 students. Under the current leadership of Principal Dorwatha Woods Adderley, Ascension School is one of the greatest educational success stories in the entire Twin Cities metro area. The school has almost 300 students in kindergarten through eighth grade that are 95% non-white and 90% non-Catholic. Most of the students come from lower-income families and reside in the challenged North Side. This year, 100% of Ascension eighth grade students passed the standardized math test and 76% passed the reading test. Their scores are significantly higher than those in the Minneapolis Public Schools and are equivalent to scores in many suburban school districts. With strong academics, spirituality, discipline and caring, Ascension School is a successful model for other urban schools.


In addition to producing an amazing curriculum, my sister has put in countless hours educating economically disadvantaged parents about the importance of quality education and consistency in their childrens’ lives.  She has also become an effective fundraiser, both for her school and for other Minneapolis causes that support children and their development.  In my 200th post, I’m happy to be able to brag about Dot.   



Difficult, Satisfying Days

A difficult day is also difficult to write about.  I prefer not to list each pain and quantify it; suffice it to say things hurt and I wasn’t good at putting it out of my mind.  My daughter helped me in every way she could-laying her warm little hands on sore wrists, placing cool drink cans on my back to relieve the feverishness, running errands and preparing meals.  She has decided that her job for the summer is to be my nurse and business helper, and she is good in both roles.  Moreover, she says she enjoys us being together, and from her comfort and demeanor, I believe her.  That is more relief than anything-the knowledge that I am not being a burden.  I treasure her company and this enormous gift of care.


I had a bit of activity this evening, making strawberry muffins for the household.  Later, my girl requested tofu (!) and asked did we have vegetables to cook with it (! again).  She accompanied me to the kitchen and found bell peppers and onion to put in the tofu.  I made a quick sautee in olive oil and a bit of sesame oil, seasoned with curry and a splash of Braggs aminos.  I was happy to do something useful.  Sometimes we show love with such little services.


Part of my daughter’s business work was photographing a pile of completed items for the store.  When she completed this Monday, I didn’t have the energy to start posting them.  I plan to start that tomorrow.  If I get one item posted per day, at least that gives me some presence in recently posted categories.  I haven’t done anything to draw attention to my store lately.  For shame!  Good old www.Essiewb.etsy.com must be refreshed and put to work! 

Thanks to my son, we have a new compost bin.  I called most of the hardware stores in town to no avail, although they all offered to order one for me.  Then I started on the lawn and garden suppliers, and found more than I had hoped.  The Ooltewah Garden Center had a large bin with a stand on which it could rotate and a door and vents – way fancier than our previous system, and sure to make our composting faster.  The son made the purchase and did the set-up, then transferred all our unfinished compost to the new container.  We’ve had this son home for three days, a real pleasure for everyone.  He’ll go see his real family for the remainder of the week, then return to the town where he goes to college so he can resume his job.  It’s nice to see him maturing, talking about his work and the independence he has at the gym where he teaches cheering and gymnastics.  The host son who is living in the house this summer was hired today, another major cause for celebration.  I am fortunate with all my kids.  I’ve got another coming next month, a long story for later. 


I did lots of knitting today.  Another chemocap is on the needles, as well as the sample I’m knitting.  The oncology center is going to put them in goody bags that they are making up for their patients.  Perfect timing.  I’m more excited than ever to take them a good-sized pile. 


It occurs to me that there were lots of good things in this difficult day.  “Difficult” may only mean that I have to work a little harder to get to the satisfying, memorable events of the day.  It’s all good.



Knitting Baby Blankets and Chemocaps While Frying B Cells

Yikes, yesterday my life sped up exponentially!  I woke with the same total body stiffness that I’ve been experiencing lately, so I called my doc’s office.  His nurse called me back for details, then later with his instructions.  My prednisone has been doubled, from 10 mg to 20 per day.  That provides some speed all by itself.  The further instructions were to come to the rheumatology office for lab this morning, then proceed to the oncology office and get B-cell killing treatment.  I was then thrust further into the near future by phone calls from one nephew and one great-nephew, anticipating the family reunion next week.  Just a little reminder that I need to disseminate all the information I’ve collected on how to have a good time for cheap or for free in Atlanta, Georgia. 


Even though I’ve been knitting and crocheting chemocaps to donate to the oncology center, this immediate appointment caught me by surprise, and I didn’t have time to put washing instructions with each cap so that I could take them in today.  I’ll have another visit in two weeks and tote the lot of them at that time. 

Meanwhile, here’s a sampling:   The purple caps are knit from an acrylic/polyester mix, kind of fuzzy-Yarn Bee Soft Delight.  You know how I feel about un-natural fibers, but cancer chemotherapy is an energy drain and easy care fabrics can be very helpful.  The yellow is the cotton scarf I showed in a previous post.  The multicolored cap at the bottom was knit from a bulky acrylic.  The blue on the left is elann.com’s Esprit, cotton with elastic, wonderful for light-weight caps. 

On top left is a crocheted acrylic in rust and cream, done a good while ago.  The middle cap is Bernat’s Miami, an acrylic tape yarn that I used a lot when I first started knitting and crocheting regularly, about three years ago.  The blue on the upper right is Paton’s Katrina, a rayon and polyester blend that is so tightly twisted that it has a very elastic effect.  The middle and upper right caps are both crochet.  I find that I can crochet a cap from worsted weight yarn in about two hours.  It takes me almost twice that time to knit one, so I resort to crochet when I’m trying to turn out volume. 


While I was on vacation, I put in lots of knitting time.  I worked on a sample that I’m knitting, one that has gotten a steady amount of attention and that I like very much.  I finished a baby blanket from the Blue Sky Dyed Cotton, an exercise in softness.  That’s become a favorite very quickly, and I was very pleased with the results.    The cotton is perfect for next-to-baby-skin, with enough weight to provide some real warmth and cushioning.  It shows stitches well, as you can see in this close-up of the garter stitch border.    This blanket was knit from corner to corner, as noted below.


Organic Cotton Baby Blanket

materials:  3 skeins of Blue Sky Alpaca’s Dyed Cotton (150 yards each); one size 6 circular needle

Cast on 3 stitches.  Staying in garter stitch, increase one stitch at the beginning and end of each row for a total of nine rows, finishing on WS row. 


Row 10: Knit across, increasing one stitch at each end.

Row 11:  Knit 5, increasing one stitch at beginning but leaving 5 knit stitches.  Purl until four stitches left on needle.  Knit 5, increasing one stitch at end to leave 5 knit stitches. 

Continue in pattern, knitting right side and purling wrong side, leaving 5-stitch garter border and increasing one stitch at each end of row, until piece measures six inches from cast-on (approximately 40 rows total).  Then drop the increases on the purl side and just increase one stitch at beginning and end of each knit row.  Remember to keep the 5-stitch garter border on purl side.  When piece measures 17 inches from cast-on, stop increasing and work 5 rows even. 


On knit rows, decrease one stitch and beginning and end of each row.  On purl rows, knit the first and last 5 stitches but perform no decreases.  Continue for about 54 rows.  This should approximately match the area on the opposite side of the blanket.  After this, add decreases to the purl rows, so that there are two decreases for each row.  Don’t forget to maintain the 5-stitch garter border by working a total of five knit stitches on either side of the purl rows.  When you have 15-25 stitches left on your needle, change to garter stitch and continue your right and wrong side decreases.  This garter stitch band can match the opposite one or not, your preference.  Continue to decrease until you have  three stitches remaining.  Bind off.  Weave in all ends.  Block if desired.  End measurement:  23 x 23 inches. 


I love this blanket.  I think its simplicity is appropriate for the heathered shades and country feel of the cotton.  It will hold a 7-15 lb baby nicely.

I’ve been listening to CBS News while I type.  One African-American man has been getting all the political press this season, but there is another who deserves some attention.  I have to admire David Paterson, governor of New York, for what he has achieved and the grace with which he manages his disability.  He was interviewed by Katie Couric, and to paraphrase his last words, if you believe you can overcome a disability, then you can.  Excellent advice. 


Once again, death to the wicked B cells! 




Chemocaps, Cookies, and Conversation with Daddy

Wow, could this be a more perfect evening?  A two-hour NCIS, my computer, slap-yo-mama cookies, and knitting to show.  Okay, yes, it could be better.  My favoritest male person (not George or Denzel) could be here, but hey, four out of five ain’t bad. 


Slap-yo-mama cookies (or any slap-yo-mama creation) is something that is so good it makes you want to do something foolish.  In my upbringing, you couldn’t do anything more foolish than slapping your mother.  It was a death sentence.  These cookies are from Martha (who else?!) and are made with butter and cocoa.  Need I say more?  http://www.marthastewart.com/mocha-slice-cookies?xsc=stf_MSLO-RECIPE  is the place to find the recipe.  However, I made some modifications.  Of course I did.  I did not have eggs or espresso powder.  I substituted 1/4 cup of soy milk and instant coffee.  My “butter” is Smart Balance Light.  My flour was half white and half wheat.  I didn’t coat the cookies with sugar on the outside. 


Actually, the lupus awareness kicked in while I was preparing these.  My thinking was this:  they want me to take this messy cookie dough and turn it out on a messy flour surface and roll it into a long tube, place it inside a paper towel tube and put it in the refrigerator.  Is that going to make my cookies taste better?  No.  It is a shape thing.  I don’t care what shape my cookies are.  I am tired and my back is hurting when I stand up too long.  I am going to defy Martha, take my dough just as it is and drop teaspoons of it onto the parchment paper (on the cookie sheet).  I am cooking it now.  No frig, no tube, no extra clean-up.  I did just that.  My little cookie mounds took about three minutes longer to cook.  They are delicious.  There is a minor aesthetic problem (you know, the way they look like teeny piles of poop). 


Now for the knitting.  I got 1/8 inch elastic and threaded it through the front of the chemo-cap scarf today.  Then I turned that section under about 1/4 inch and stitched it down.  That scarf started as a 30-inch long garter stitch triangle with an eyelet border.  I began with three stitches, then increased at either end of each row by making a knit 1, yarn over.  After the first 20 rows, I began to increase every other row.  The front edge has some eyelet treatment that I think is just so-so.  If I was doing it again, I would have garter stitched right up to the edge.  After I bound off the triangle, I crossed the tie ends in the back, using my head as a sizer, and bound them with a length of crocheted chain.  Then I sewed the apex of the triangle (the point that hangs down in the center back) to the knot.  This makes a secure cap that will stay on the head and not need any readjustment of the back tie.  By the way, the yarn is Knitpicks Crayon.  It is 100% cotton, very soft.  It can be machine washed, but don’t put in dryer.



The next cap is much different.  I started it at the brim, knitted a scalloped edge with eyelets made by yarnovers.  It was knitted in the round, very simple stockinette, with a gradual decrease to the apex.  I crocheted a row of singles around the brim so that it wouldn’t roll up.  It neatened it without eliminating the scallop pattern.  The yarn is what makes it special.  It’s elann.com Esprit, 98.3% cotton/1.7% elastic.  There’s just enough elastic to make the cap hug the head comfortably, and the cotton is soft and wearable. 


I love this cap.  I will make more.  I need to increase those two hats to at least eight to make a decent start at the chemo office I used in January. 


Babysitting the parents this morning was fun.  A conversation with my dad, as well as I can remember it:

Daddy:  I know you have to pay attention to other people’s feelings, but sometimes I just want to say “stop all that worrying”.

Me:  I know what you mean.  I saw that a lot when I was working.  I wished there was a switch where you could just turn off people’s worries. 

Daddy:  When they were bombing us and shooting at us in Germany and Korea, I couldn’t stop and worry.

Me:  How did you handle it?

Daddy:  Concentrated on the job I had to do.

Me:  Yeah, I learned that in college.  ___ used to break up with me just before big exams.  I learned to put it out of my mind and study, because I couldn’t let that craziness mess up my grades. 

A good conversation for us.  He rarely speaks of his war days, I rarely talk about my first husband.