Getting better all the time

It'll be two months since radiation ended next week, and I am feeling better each day. Not "back to normal" yet, but I think I might have to reset "normal." Finally started working on getting some strength and fitness back in my body - dog walking just isn't quite enough! We got a "spinner" exercise bicycle which I use every now and then and realize I'm not ready for the real bike yet, at least not any distance (had tried the real bike and found that I had very little strength - leg or lung - which was part of the motivation for getting the spinner; the other being that we three can all use some regular workouts) and Erik finally set up the Wii Fit I bought in June before my surgery (to get in shape, per the surgeon's suggestion), which I have been using more regularly. I'm actually enjoying the Wii Fit! My Wii Fit age has been all over the place: 51, 60, 70, and today, 48! So that feels good.

Had my first getaway weekend since my cancer diagnosis last weekend with my Dad and Diane in the San Bernadino mountains and it was really nice. Beautiful mountain scenery - big trees, acorns on the ground, fat gray squirrels burying those acorns, nice rocks, just-right cabins and stone lodges, buffet/camp-style meals, and lots of nice people. It was the Solana Beach Presbyterian Church retreat, and even though I'm not a Christian I really got a lot out of it, spiritually. Enjoyed meeting all the families, being with my Dad and Diane, getting lots of sleep in a private cabin, taking a walk to the creek and back to watch the kids on the zip-line, and hearing the guest speaker, Mark Labberton (former pastor at First Pres. in Berkeley - nice and liberal!). Thank you Dad and Diane! Wish the rest of my family could have been there with us!

Emily broke her foot on Halloween and will be on crutches till just about when she leaves for Thailand on December 31st/January 1st. It's going to be really hard to say goodbye to her for six months, but I know she'll have an amazing adventure at the university in Bangkok and the other places she decides to visit (Laos, Vietnam, Cambodia).

Erik, Karl and I are plugging along in our routines, along with little Mr. Johnny, who continues to charm, delight, and frustrate me (still the walking thing!).

We welcomed a set of twins into the family earlier this month - Karl and Mel's Cooper Karl and Madylin May! Haven't seen them in person yet (they're still in the hospital but doing well) - hope to soon! Karl Sr. will be visiting from NY for three weeks, starting this Wednesday. I haven't seen him in more than a year - really looking forward to his visit!

Probably other things are new, but I don't feel like writing any more.

Love to all,

Sarah

Radiation over!

Indeed, for now, all procedures and all this cancer stuff is over, finito, done!  Hooray!  I am so sick of it all and ready not to write about it for a while.  But as weird as it may seem, I can't help but feel this little funk I'm in has to do with the fact that I'm no longer a "cancer patient," no longer seeing all these nice caregivers on a daily basis who really seem to care, no longer the center of my little cancer world...

It may take up to three weeks before I start feeling better after the radiation, so that's also got me down a bit.  I just wanted to be done and start feeling better instantly, noticeably, daily.

Johnny continues to be a little love dog and fairly constant amusement.  He is still the worst and most neurotic walker I know - weaving back and forth behind me, getting right under my heel so that I kick him , quite frequently (and accidentally) in the chin, and then occasionally stopping dead in his tracks, usually when he is positioned right between my legs, causing me to come very close to tripping and falling all over him and myself.  Took him to a puppy socialization class at Metro Dog on Sunday (his 2nd birthday, and he did great.  He was shy at first, hiding under my chair, but eventually went out to mingle with all the cute little pups.  Reminded me of Mischief, who hid under my chair for the first time or two at obedience school, but eventually came out and was declared the most improved in terms of socialization/friendliness at that class!  So I have hope that he, too, will become less fearful and more social as time goes on and we work on it.

Emily's first day of classes begin tomorrow if there isn't a walk-out.  Something is planned throughout the UC system, but I don't know if its more student or faculty oriented.   I think she's enjoying being in an apartment - cooking, having more space, etc.  She went and saw a taping of Conan O'Brien the other afternoon, and was in the front row, but they failed to pan the cameras across her row, silly camerapeople!  Thank goodness for the computer - I was able to watch it, with only 2 minutes of commercials, the next afternoon.  Didn't have to stay up way past my bedtime just to not see my daughter on TV.  But it was a rather funny show, with Ricky Gervais, the man behind the original Office.  (Which is now on my Netflix queue.)  

Erik was home sick with a cold today, but it doesn't seem too bad, so he should be back at school tomorrow.  We got his official senior pictures back today, and boy does he look handsome in that phony tux!  He's even got dimples on his cheeks when he smiles!  Nice.

Karl's boss has been out sick for two days with a cold - I hope Karl doesn't catch it.

 I'm not in a very chatty mood.  Will try to write more often than every 22 days, but take it as a good sign the less I write.

Love to all,

Sarah

11 days of radiation

It's been 11 days of radiation, and it is officially old.  Can't complain about the staff at the new Kaiser Oakland Cancer Center, or the new machine, or the nice, lit-up ceiling tiles with the sky and blooming trees and clouds to look at while lying there on the cold, hard plastic table, hands over my head holding on to two posts, while the machine rotates around my chest area and radiates me from seven different angles.  But the drive there on route 80 is not so much fun - mostly just mundane already.  I am getting more tired as the treatment goes on, my appetite has decreased (as well as my desire to cook, if that can possibly be lower), I've gotten sores in my mouth (not quite as bad as the sores chemo created), and feel sort of foggy brained (I know chemo-brain is real - is there such a thing as radio-brain?).  I also feel sick to my stomach a lot, which the radiation oncologist told me might be because the left side of my diaphragm, which is up higher due to the damage done there during surgery, also took my stomach along, so that my stomach is getting some radiation - yuck.  Well, this is the end of the treatment, I try to remind myself, so it's almost over!

I'm wearing myself out at school, but will try to take it easy.  Started going into the classrooms and doing my WorkAbility spiel, which makes the day go by quickly (more interesting than the state mandated paperwork) and enjoyably, but it wore me out today, especially doing two presentations during 7th period (90 minute blocks), back-to-back.  Made it worse today by going out to vote after walking Johnny, then toodling over to Costco for gas and important things like mini chocolate bars for my school treat basket and smoked salmon and lots of shampoo.  Then I was really exhausted.  

Johnny is a sweet, loving and lovable little guy.  My favorite nicknames for him are Mr. Stinky (he has bad breath, and yes, I should brush his teeth, but I don't want to!) and Stubbs.  He's a great lap dog, goes happily into his crate at night and into the gated kitchen in the morning when I leave for work, doesn't have many accidents (mostly in the morning when I'm trying to get his harness on to get him outside to pee), and looks into my eyes with his soulful brown eyes the way only a dog can, but he still has a ways to go on the walking business.  Emily has been training him to heel this week.  We're not signed up for obedience classes till October, because I know how exhausting it is, so I'm waiting till radiation is over.  In the meantime, Karl is impatient to get him walking well.  I've told him he's welcome to take Johnny to class, but for some reason he doesn't want to do that!  

Emily leaves for Montana (and a road trip back) on Friday, and will head back to school shortly after she gets back from that.  She's got a creative mess of sewing, retro patterns , fabric, and a new, old Bernina (all from Henri's mother - thanks Henri & Lynn) all over the living room floor, which I love and Karl hates (too much clutter...).  

Erik has started school again and doesn't seem to be suffering too much.  Likes his AP Comparative Govt. class and only has two periods on Tues. and Thurs., from 9:15-12:45.  Mon., Wed., and Fridays he's out of school at 2:15.  Wish I were on his schedule!  

Labor day weekend. Nice northern California summer weather (finally).  No wildfires burning in our neighborhood, thankfully.  The cool ocean breezes and fog always come in after about three days, so we never have to worry about serious heat waves in El Cerrito.  It was a rather cold and foggy summer.  

Love to all.

Sarah

Pictures of Johnny

These are pictures of Johnny trying to learn to come down the wooden steps.  He has yet to master them.  He's cutest when he sticks out a paw like he really wants to come down, but...

Two days of radiation; Johnny got neutered

The first two days of radiation have been uneventful.  Procedure takes maybe 15 minutes total, but will probably be faster as time goes on.  They've scheduled me for 10:30 every morning, except weekends and Labor Day, until 9/22.  The drive will be easy, but it does sort of cut my work day up.  I'll probably work from 7:30-10AM and 11 or 11:30-3:30 or 4, if I'm not having side effects.  

Drove Johnny to the vet in Santa Rosa that his previous owner and the Norwich Rescue person recommended (2 round trips of 1 hr each way) for his neutering operation and to have his throat scoped to see if he had any Upper Airway Syndrome signs.  Luckily, everything looks clear there, and he's doing alright at home now post-surgery.  I'm sitting on the floor  with him because he's not supposed to jump, though I think he'd be more comfy next to me on the couch.  He's still sort of dopey and having a hard time just relaxing, so I put him in his crate at dinner time, and he was able to lie down for a bit.  I'll give him a pain pill and put him to bed early-ish, and hope he doesn't wake up and lick at his stitches or wound too much.  He's been mostly leaving it alone so far.

Emily is back east visiting family, so our activity level around here is a bit low and sort of boring!  (In other words, we miss her.)  She'll be back next week.

That's all I've got to say right now.

Love,

Sarah

Radiation postponed for second time; welcome Johnny!

Well, radiation was supposed to start on Tuesday, then they switched it to today, and now they've switched it again, probably next Monday, and I will be on a "different machine."  So I await a call from the radiation oncologist as to what this is all about; what does this mean?  And the time slot they gave me is 4:45Pm, which is pretty crappy in terms of driving, as it will be rush hour on the freeway in both directions so it will take twice as long as the 1:30 appointment would have.  Gripe, gripe, gripe.

But the exciting news is that we've welcomed a sweet  new Norwich into our lives - Johnny!!!  He'll be two years old in September; he's a champion, which means he's won a lot of shows, but to me it means that he looks like a perfect Norwich and has the great personality they come with.  He's a bit shy because he wasn't socialized properly at the right stage in his puppyhood, so we're slowly working on getting him used to meeting new people, which is easy because so many friends and neighbors are interested in seeing him!  We got Johnny on Monday night - Erik and I had gone to  meet him earlier that day, and Erik gave his seal of approval because Johnny liked him, came and took treats from his hand!  His breeder was here from Oregon, visiting an El Sobrante breeder who heads the Norwich Terrier Rescue Society, and I just happened to email her on Sunday, knowing she was having some gathering of Norwich's that day, to see if she had heard of any available boy or girls.  She emailed back saying that Johnny had been promised to a couple down in Palo Alto, but that they refused him because he was "too aloof."  Well, their loss!  So, with the help of my dear family, we were able to purchase him at a "reduced rate."  Thank you so much to Lynn, Mom, and Dad.  You know how much it means to me to have this loving four-legged furry guy in my life - he is doing me a world of good already!  As some have said, Mischief would approve.  I agree.  My neighbor Ann met him today and said he's "channeling Mischief."  He's sweet, loving, feisty, and eager to please.  After things settle down (radiation begins, school starts, he gets completely comfy with us) I'm going to get him enrolled in basic obedience training.  The only thing he knows how to do is prance like a show-dog, which is pretty cute but not the most useful thing in the world.  

Emily is vacationing on the east coast for a week or so - we  miss her already and wish we were there too!  

Erik is dreading the end of summer vacation, but at the same time he is doing his summer studying for his AP Comparative Govt. class, so good for him!  School starts on August 26th and I believe I go back to work on the 24th.  

Karl's trying to keep a bum knee from getting worse with ice and just the right amount of activity, and he's doing a good thing by trying to plan an activity most weekends.  Last weekend was kayaking at Jenner - a great day for the four of us (except when we tried to go further north to Fort Ross and I got car-sick).  This Saturday we may go to a beach, but the one we were thinking of was closed due to shark sightings, so maybe we'll pick a different one!

Balabusta

Well, it only took me a day to remember the Yiddish word I was looking for - balabusta!  Learned the word from Emily and Erik's second grade teacher - she called me one.  Here's the definition from Wikipedia:  

Balabusta is a Yiddish expression describing the good homemaker among Ashkenazi Jews. The word derives from the Hebrew word ba'alat-habayit.

In contradistinction to the English terms "housewife" or "homemaker", it usually has purely positive connotations^[1], although there are sources that claim otherwise^[2]. The traditional role of the balabusta also includes, besides fulfilling the household duties for the family, its spiritual bonding and helping its members hold together.^[3].

Variations on this word include the Yiddish Balabuste or Balabusteh and the Ladino Balabusha among Sephardi Jews. ^[4].

The word balabusta comes from the Hebrew ba'alat habayit, meaning mistress of the house.

 And yes, I do have Jewish roots:  my paternal grandfather was Jewish, from East Prussia.  

And that's all for now.

Happy days to you all.

Sarah

Starting to feel better...

Although still grieving for Mischief, the fog of depression is lifting and I am getting back to the mundane activities of daily living, which is a good sign.  The things I've resumed, and enjoyed, include laundry, baking, cooking (very minimal), washing dishes (am I crazy?), and some general clean-up of the mess that has overtaken our house in the last 8 months.  Mind you, this is all minimal - I have not become a whirling dervish of a housekeeper (what's that good Yiddish word for housekeeper extraordinaire?).  I also walked to Safeway and the donut store the other morning, but had to call Karl to come pick me up about half-way home, because I was worn out.  Anywhere I walk is still really hard, because Mischief walked every block in this neighborhood with me and I think of her and her favorite spots to pee and poop, the squirrel trees, the big yellow lab on the corner that we always had to look out for and cross the street if she was there, the corners she was afraid of and would balk at going around, those scary mailboxes, and Robert & Rebecca's house, where she always wanted to stop and go say hello.  I'm still managing to get myself out for walks, however.  They are just less frequent and not nearly as fun.  I contacted the Norwich Rescue Society shortly after Mischief died and am now on their list for a "retired girl," which Mischief was (a breeding bitch that has aged out and the breeder no longer wants), or a non-conforming or mixed (with Cairn or other small terrier) dog.  The person running the rescue society for the Norwich club is a very nice breeder in nearby El Sobrante.  (She and her husband have 5 Norwiches.)  She's put the word out for me.  I am trusting in god, the universe, whatever, that when the time is right, a Norwich will appear that is just right for us.  That gives me great hope.

We had a nice visit with my Dad and Diane last week (Thursday and Friday).  I was still crying a lot then, especially around 5PM as I got tired and missed Mischief's dinner routine (first, I would say "is it dinnertime?" and she'd cock her head sideways; then when I got up to go into the kitchen she'd come running along, and while I got her little scoop of kibble with water ready she'd be dancing and sometimes even barking at me, which I found adorable even though I didn't want to encourage it; then she'd inhale her food in less than 30 seconds, unless some scary sounds happened, like Erik saying something, or her name tag hitting her metal bowl, in which case she'd back away and wait till things calmed down...), which was always followed by me saying to Erik, "we're going upstairs to meditate now," and Mischief would trot upstairs with me and lay by my bed while I rested, listened to calming music, affirmations, or guided imagery on my ipod...So it was nice to have Dad and Diane here for their good company, Dad's interesting stories about his time as a Navy pilot in the late 50's/early 60's, good ethnic restaurant meals (Thai, Japanese, and Italian), and lively political/philosophical conversations with the kids that didn't erupt into arguments!  Erik spent more family time with us than he has in ages, which was also a treat!  We also spent a good afternoon watching "Funny People."  The kids and I enjoyed it (yes, it's full of lots of sex and penis/balls/vagina/breasts humor, but I guess I've become immune to being disturbed by it, living and working with teenagers...), but I think Dad didn't (for all the sexual references mentioned above and what it says about our view of sex these days...), and I'm not sure what Diane thought...My Dad is the youngest looking and fittest 78 year old I know, and handsome too!  And we love Diane's calm, sweet, agreeable nature.  Thank you both for the visit!

Radiation begins next week.  I'll probably begin by driving myself there, but as time goes on, if I find myself worn out, I will seek drivers (and can reimburse for gas, courtesy of the American Cancer Society).  The possible side-effects I'm concerned about are sore throat, difficulty swallowing, slowing down of my phrenic nerve healing, and fatigue.  With any luck, these will be minimal or non-existent.  

School starts in a couple or three weeks, and I plan on being there as much as I'm able.  I'll be in the middle of radiation, so my thought is to go to work in the morning, do my radiation early afternoon (right now I'm scheduled for 1:30PM), and rest at home afterwards.  Just have to wait and see how I feel.  But I'm looking forward to seeing all my wonderful co-workers, my boss, the returning and new students.  I fear things are going to look quite different at the high school with all the budget cuts and lay-offs, but hope that we all can manage.  

Today is National Night Out - to promote neighborhood togetherness and awareness.  Show your support by turning on your porch light or getting together with neighbors!  Some of our   neighbors in the next block are having a dessert party, which inspired me to make my most favorite Oatmeal Cake with Broiled Frosting.   Come on over if you want some!  

Hope everyone is enjoying their summer...

Love,

Sarah

Farewell to my sweet Mischief

We made the decision to euthanize Mischief last night after the surgeon called to let us know it was laryngeal collapse, something that doesn't respond well to treatment.  It was a hard decision but we feel it was the right one.  A lot of tears last night, and dreams of Mischief, and more tears today, missing her clicking toenails on the hardwood floors, her face waiting at the front door, her whole body wiggling with excitement even if I'd only been gone ten minutes...I finally decided to take a walk to mail a letter.  Cried all the way to the mailbox, the one she was afraid of.  It made too scary a sound when I opened it.  Walked a few more blocks, crying and blowing my nose and crying.  Luckily, I didn't have to stop and talk to anyone.  Mischief left a big whole in my heart.  

Thanks for every one's comments on the blog and facebook - you are all so dear and have encouraging, empathetic, and thoughtful words to help me.  I really appreciate them.

If I can figure it out, I'll try to post some pictures of Mischief either here or on facebook.

Love,

Sarah

Good news bad news

The good news is that my PET scan was clear - no sign of other cancer or metastases.  Everything is going well on that front, and I'm recovering from the surgery and phrenic nerve damage day by day.  Radiation begins the week of August 10th and lasts 5-6 weeks, 5 days a week.  I expect that to go well and hope for minimal side effects.  So we're feeling very positive overall about a full recovery and a farewell to this whole unpleasant disease.

The bad news is that Mischief is in the emergency room at UC Davis Veterinary Hospital in Davis, an hour from here.  She was having severe respiratory distress - it may be a collapsed larynx (not good, not treatable) or a laryngeal paralysis, which can be repaired.  She may also have a blocked soft palate, pneumonia, or a mass in her nasal area.  We will know tomorrow whether and what kind of surgery she'll undergo.  I'm a mess but I know we'll make it, no matter the outcome.  I hope to have more good years with my sweet and faithful dog and know that she's in the best place for vet care.  With any luck she'll be home Thursday or Friday. 

If you're a dog lover, please send her good thoughts and healing wishes.  They worked for me; they'll work for her.

Love to all,

Sarah

P.S.

Tests for Myasthenia Gravis were negative, so the breathing difficulties are most likely damaged nerves in the diaphragm and/or partially collapsed lungs.

Ho-hum

Mom's visit was great - she was a comfort, a help taking me to appointments, and a joy to be with.  She reminded me to slow down and take it easy.  We took walks around the block with Mischief.  I wish Mom lived close by, but I am lucky that she can still travel and visit us.  

I don't really notice improvement in my recovery every day, but looking back 5 or 10 days I can see that I'm getting better.  My incision is healing just fine, though a little sore.  Breathing is still labored, but much better than before.  I get out of breath if I talk too much or start laughing, and the coughing that ensues still hurts.  Sneezing is painful too, but less so each time, and thankfully, I'm not sneezing that often!  My appetite is way reduced - that's mostly a good thing except that I'm especially turned off by healthy veggies and my stomach gets full so fast that meals are uncomfortable, but I do like my reduced body size!  I'm getting poked for blood at least once a week to make sure my Coumadin dose is correct, so bruised arms are the norm.  Sorry if this is too much detail.  

The thing to remember is the surgery was successful, they got the cancer, and this "collateral damage," as my mom likes to call it, will go away.

First appointment with radiation oncologist is next Monday, July 20th, then two more appointments before the regular treatment begins.  I will probably be asking for rides at some point during the radiation, but I won't know when that will be.  The nurse tells me that the effects of the radiation are cumulative, like the chemo, so I might not start feeling those effects until half-way through.  The major side-effect of radiation is fatigue, but it differs from person to person, so we shall see.

No more family visits are scheduled till my Dad and Diane come on July 30th, so I'm up for visits (still not too long, up to an hour, maybe) and phone calls.  I'm still not driving (don't feel strong enough), but with Emily home the shopping needs are taken care of.  And we have Giovanni's down the street, where I can always send Erik if we run out of essentials.  

Karl is back at work full time. He needs a vacation!  He and the kids are still taking care of most of the cooking and cleaning and daily running of the house as I try to heal and build up the strength to get back to my daily routines.  Having Mischief to walk three times a day continues to be one of the best things for me, physically.  

We are going to try another outing this weekend - taking the kids to Healdsburg on Saturday for a canoe trip down the Russian River (the same one Karl, Mischief and I did last year for our 20th anniversary) while Karl and I meander around Sonoma County, go to the coast where it's cool, etc.  We're not taking Mischief on this trip (I still can't lift her), but it should be a  nice change of scenery, a chance to dip my feet in the Russian River or Pacific Ocean, and maybe do a bit of walking either in some of the nearby redwood forests or charming little towns on the route.  The kids will probably enjoy their adventure on the river - these are sturdy, inflatable canoes that are very hard to steer - an exercise in cooperation that Karl and I almost failed...Most of the way the current carries you and all you need to do is steer clear of the shore and snags of trees or shallow spots, but at the end, before the dam, the river widens and there you have to paddle, more or less in unison with your companion...

Thanks again to everyone for their thoughts, love, prayers, words of encouragement, and hugs, virtual or in person.

Love,

Sarah

Oops, wrong dates!

My mother pointed out that I wrote the wrong dates for her visit - she will be here this Wednesday, the 8th, through next Tuesday, the 14th.  Sorry for the confusion!   

Happy Fourth of July

I hope everyone is enjoying the long weekend and the 4th of July, if it's your kind of holiday.  We tend not to be big on the fireworks and stuff, but a barbecue with friends and family is always welcome.  So we're going over to Cosette and Scott's for just that, a nice, relaxing afternoon with friends.  

Karl and I celebrated our anniversary yesterday by going to a nice beach about an hour south, just north of Half Moon Bay, where I could walk easily down to the water.  I relaxed in my nice chaise lounge that Karl brought down, wrapped up in a blanket, enjoying the sun, the water, and the cool air.  We talked, Karl walked, I watched people and saw pelicans dive-bombing into the ocean for fish (or fun?), and left after an hour or so for a late lunch in Half Moon Bay.  Very nice afternoon.  

My recovery feels very slow in some ways, but as long as I am progressing, no matter how minimally, I am content.  I'm still not able to lie down in bed (or on the floor), but I can nap and rest in our bed now and then with the foam wedge pillows Karl bought. Breathing is labored and restricted still.  Coughing hurts like hell, especially as the Tylenol wears off.   The couch is still my bed and I can sleep as long as I take an Ambien and Vicodin.  Both tests for Myasthenia Gravis have come back negative, so that diagnosis is out, I'd say.  Time and patience and not overdoing it, but not being a total veg either, are what I need.  Thank goodness I've got the summer to recuperate.  Radiation?  I keep forgetting that that's coming up.  Don't have a date for it yet - I imagine my sternum needs to heal a bit more before they start zapping me.

Emily and Erik have been big helpers - I'm lucky to have them both home this summer too.  Emily took me to Kaiser almost every day last week, in addition to doing shopping, cooking, cleaning, and lifting things for me.  Erik is mostly engrossed in World of Warcraft, but he does just about anything around the house I ask him to, and I've got a bell to ring in case  he doesn't hear me, and he comes running when he hears it!  He's also been getting himself to the Y a few days a week for exercise, which is great.  

My sister's visit was great and much appreciated.  We went and saw Up one day - great movie!  Who knew we'd be crying so much through it?  I highly recommend it, and you don't need to see it in 3D.  Fenton's, a local ice-cream parlor mentioned in the movie, is only a block away from Kaiser in Oakland, so Emily and I went there a few days after we saw the movie and sat on a bench at a bus stop  (didn't count the red and blue cars) and totally enjoyed our ice-creams but couldn't finish more than half.  

Mom comes next week, Wed., July 15th - Tues. the 21st.  We'll rest and relax and she'll be a great comfort to me with her cold hands and warm heart.  

I won't be needing visitors while mom is here, but I don't mind if anyone wants to come over for a quick visit - just call first.  Half an hour is good for a visit.  

Thanks again for everything....I hope you all are having good summer travels, adventures, etc.  

Love,

Sarah

Do I take him for granted?

After my last posting, I realized, much to my horror, that I had forgotten to say what a hero and great comfort Karl has been to me through this ordeal.  He was with me every step of the way, whether I was aware or not,  holding my hand, feeding me ice-chips,  talking me through uncomfortable procedures, dealing with doctors and nurses and technicians, and keeping me from total boredom and loneliness once I was conscious and aware again.  He's been a tireless researcher and my constant advocate.  What would I have done, what would I do without him?  Thank you, dear Karl.  We'll be celebrating, in some fashion or other, our 21st wedding anniversary on July 2nd.  I just had to make public what a wonderful, dear man he is, and how lucky I am to have him.  

It's been lovely to have my sister here, helping with all the little things every day that add up to a lot.  She supervises my showers in the mornings, straightens my bed (the couch) every day, takes  my doggie on walks, yells at me when I do stupid things like pick up and move the rocking chair (without thinking!), and plucks my whiskers (once the hair started growing, it went crazy, and suddenly I have Groucho Marx eyebrows and a mustache and beard!!).  

We took a big outing (for me) to Pleasanton today to visit with Karl's sister and her husband and our nephew and his pregnant-with-twins wife.  It was way too hot for me, but the air-conditioning saved me, and everyone else had a great time swimming and hanging out in the 100 degree plus sunshine.  Erik's birthday was properly celebrated with a nice barbecue and Christine's famous Strasberry Pie, and I finally got my fill of Michael Jackson retrospectives from all the various tv stations.

I'm still pretty weak, but gaining strength every day, little by little.  My breathing has improved a slight bit.  I have to hold a pillow to  my chest to cough, and it hurts, but that is also improving.  I still can't lie down completely, which is why I'm sleeping on the couch.  Finally got  my first good night of sleep last night.  Mischief is thrilled to be allowed to sleep at my feet on the couch.  Tuesday I see the neurologist and hope to find out the results of the blood test for myasthenia gravis.  Lynn leaves Tuesday.  I'd love to have visitors for short periods of time - call if you want to come over - I can handle a visit a day.

Love to all,

Sarah

Home, sweet home!

Just when I was getting really discouraged and wondering when I could leave the hospital, they decided I'd progressed enough there and let me go! I am so happy to be home with my family (including sister who is visiting/taking good care of me) and animals and not have to listen to buzzers and beepers and press a call button every time I want to get out of bed or use the commode...I sure didn't expect to be in the hospital for twelve days  or to have these ongoing side effects/ailments, but the good news is that they felt the surgery was successful (got all the cancer out with negative margins) and we expect that I'll eventually be more fully recovered.  We are still not completely sure what happened during the "false emergency," as Emily called it, but it was a set-back and pretty scary.  The possibilities include some bruising of the phrenic nerves, normal surgery-related partial lung collapse, or myasthenia gravis.  Will know more about the latter next week, but even that blood test may not be conclusive.  I lost a few days in the hospital (no memory of them) to morphine, surgery amnesia, or something, and I find this a very disturbing feeling.  No doubt I lost some gray cells as well, in case I sound a bit addled.  Sorry I didn't get to have more visitors at the hospital, but it was just too much most of the time.  Thanks to those who sent cards and well-wishes and the wonderful people who kept my family fed with delicious meals.  I may request some more meals next week, after my sister leaves, and may also be needing rides now and then as I can't drive for the next two weeks and if Karl and Emily are busy.   You'll see them posted as needed.  I am so glad to be home, but exhausted as well, and can tell its going to be really hard for me to keep myself slowed down.  I've asked Karl to ask me "do you want to go back to the hospital?" to remind me to take it easy....Thanks again to all my friends, family and supporters for helping us continue to get through this ordeal.  

Love,

Sarah

Leaps and Bounds

Great news! Sarah is now well enough to dictate a message for her lovely followers. Here it is :) Emily

Greetings from the World of Medical Miracles!

I am mostly breathing on my own now, and am being weaned off medications and IV lines.

I'm not in much pain. The biggest discomfort i have is shortness of breath, which is still being investigated, and some swelling. I do use the ventilator (mask, not intubation) for breathing occasionally for short periods of time, which is slightly uncomfortable.

Boredom is the biggest challenge... TV is bad, there are no DVDs, no laptop, and at this point I'm bored with the vitals monitor. My brain is still a little fuzzy for reading.

It's hard for me to talk for a long time so visitors are still limited.

But I am up and walking at least 3 times a day; the record distance so far is over 100 ft!

The care here has been really good, and I appreciate all the effort the staff puts in to keeping me well. They are very knowledgeable and treat me like family.

Most comforting to me are everyone's thoughts and prayers.

Love, Sarah

Also, it looks like she will soon be graduating from the ICU! The next stop will be some kind of private room (TCU or plain old hospital).

Slow Recovery

Hi Everyone,

Sarah is still in the hospital; still in the ICU, actually... recovery is taking somewhat longer than expected. The only complication so far is her breathing, which is regaining speed and depth more slowly than we'd like.

But it is getting better. Talking is tiring but it's getting there. She's bored in the hospital, which is better than just being miserable or sleepy all the time.

Last night there was a false emergency... a doctor suspected she had internal bleeding and put her on a ventilator, but they confirmed there is none, and it looks like the symptoms may have actually been caused by her medications. So currently she is still on the ventilator, which is frustrating... but I suppose better safe than sorry.

My dad is there all day every day, and Erik and I check on her frequently, too.

Some of you have asked about visiting.. and it looks like within the next few days she will be able to have visitors. As of today it is too exhausting.

Thank you still for your warm thoughts and prayers. You are in our hearts, too!

Emily

All Is Well!

Hey there friends and family,

We can all have a big sigh of relief because Sarah's surgery was successful and safe. She was in surgery for about six hours, and everything went smoothly. Recovery seems to be progressing, too-- her doctor said that she is "ahead of schedule," whatever that means.

My dad said she was quite tired yesterday, trying to sleep off the anesthesia and remaster normal deep breathing. Today will probably be similar, so visitors are still limited.

Thank you all so much for your support, in prayers, thoughts, hugs, meals, smiles, and friendship. It truly helps.

Here's looking forward to more good news!

Much love,

Emily

Final Countdown

Surgery tomorrow morning.  Have to be there at 6AM.  Hope it starts by 8AM, and if all goes well, it may be done by noon.  As I've said, Karl will be calling people to let them know how it went.  If you haven't heard from him, you can try him at 510-918-2052.  You can also try checking the blog - Emily has agreed to post an update, or you can call her on her cell at 510-593-0085.  

We are all alternating between anxiety/high stress and positive/calm feelings.  Karl and Emily are gardening right now, Erik is working for our next door neighbor, gardening as well, I just hung out some laundry in the warm, breezy sunshine, and the house got  more or less cleaned/picked up this morning.  And for Mischief, it's just another day to hang out by my side, napping and snoring and making me happy.

I do expect a good outcome with this surgery, and look forward to being able to post a message from the hospital later in the week, possibly having some visitors, and perhaps talking on the phone a bit.

Thanks for all the good thoughts, prayers of healing, and anything else people are sending my way.  

Love to all,

Sarah

Surgery scheduled - 6/15, Monday. 1st of the day

Well, everything happened today - the blood test (all looks good!) and the surgery date set!  A week from today, 6/15, Monday, first surgery of the day.  Pre-surgery physical, meeting with the anesthesiologist, and all that will happen some time this week.  We're glad to have the date, but now it seems so soon, so much more real, and, of course, a little frightening.  The doctor predicts I will be home from the hospital by Friday or Saturday of next week.  I will probably post again before next Monday, but in case I forget, Karl will be the point person if you want information about how the surgery went or visiting or anything along those lines.  His cell # is: 510-918-2052.  I'll post some requests for meals on lotsahelpinghands.com for Karl, Emily and Erik while I'm in the hospital.  

In the meantime, I've been feeling better.  Made dinner twice last week, came home from church yesterday singing a song, trying to bug Erik with my singing (easy to do!), hung out laundry, and baked.  All good signs.  

Thanks for all the love and support so far - please keep me in your thoughts and prayers!

Love,

Sarah

Tentative surgery date

Dr. Granelli gave us a tentative date for the surgery, subject to change if my white blood cell (neutrophils, to be precised) level hasn't increased enough.  Monday, June 15 or Wed., June 17th, first surgery of the day.   That's all we know right now.  Next blood test on June 10th.  In the meantime, I get to finish out my school/work year, see my seniors graduate, and maybe even go to the staff party!

Please send us thoughts of patience and peace, to help us keep rational and sane as we await the surgery.  Also, feel free to call or schedule a visit.  

Love to all,

Sarah

Nothing New

Not much new.  I'm mostly feeling a bit better every day, but when I have bad days (like Monday and Tuesday - nights of constant chills and sweats, worse nausea, migraine) I get discouraged and frustrated.  But my dear husband reminded me that I should take a day off work if I'm feeling bad (which I did, and it helped), and I'm feeling better again today.  Even though it's been 3 weeks since the last chemo, something is still messing with my system, and I'm sure the white blood cell count is very low.  Decided to ask the oncologist for a blood test when I go in next week, to see how my levels are, and then email the surgeons and bug them for a surgery date.  Still doing acupuncture 2 times a week - don't know if it helps but I know I enjoy going and getting an hour of peace, rest, and rearrangement of my chi. 

 Finally finished the novel Jonathan Strange and Mr. Norrell, a long but worthwhile read (thank you Andy and Jen, and Lynn for encouraging me to keep at it), then read Paul Auster's Timbuktu in one day, a bittersweet tale told from a dog's point of view (thanks again Lynn!), and am now reading The Secret Life of Bees.  That's all my night-time reading (except I read Timbuktu during a whole day).  During the day, when I'm resting, I'm usually reading Newsweek or Sunset or Dwell or Popular Science, and now I have a nice stack of New Yorkers from Catherine, which should keep me busy all summer!  (Thanks Catherine!)  Erik and I have been watching Arrested Development on DVD (thanks to Andy & Jen again!), which is great for the daily required minimum laughter dose.  My Netflix started up again too (I cancelled it for a while), and because I haven't updated my queue since December, it's  a surprise every time!  Right now I've got Season One, Disc One of The Wire, which I'm hoping the guys will watch with me this weekend (thanks for that recommendation, Debbie).  

Probably won't be requesting any meals on LHH till surgery time.  Speaking of meals, Erik is now our Monday night chef (computer free day), and we've had two great pasta dinners so far!  

Emily will be home from school in less than a month (June 10th), which will be wonderful, of course.  I love it when the male/female balance is perfect!  

Hope everyone has a nice Memorial Day Weekend.  

Love to all,

Sarah

Good News from the CT scan!

The CT scan showed further shrinkage of the tumor, as well as reduced compression on the vein near the SVC (superior vena cava)!!!!  Hooray!  The largest area is down to 3.8 cm - I think the original size was around 7 cm, and after 3 rounds of chemo it was around 4.  So it didn't shrink as much as during the first 3 rounds, but at least the last 3 were not in vain!  Waiting to hear from the surgeons now for a surgery date - will keep everyone posted.  

Once again, thanks to all for their prayers and healing thoughts - they've played a big part as well!  Love to all,

Sarah

Happy Mother's Day!

Well, this last round of chemo was definitely the worst - I was really knocked out by extreme, c0nstant nausea, weakness and low energy, and general misery.  It was the last round, however, so chemo will now be just a terribly unpleasant memory, eventually to be forgotten like the pain of childbirth....Just when I thought I was never going to feel better, I began to perk up a bit on Friday, which was a big relief.  Then, the best Mother's Day weekend surprise came in the door on Friday evening - Emily!!!!  She surprised both me and Karl (Erik, Christine, and friends were in on it) by walking in the door, unannounced, completely catching us off-guard, causing double-takes, jaw-dropping, and a big, big smile from her mom!  Big hugs and kisses too!  A very special treat to have her home for the weekend.  

My CT scan is on Tuesday, and sometime after that the surgeons will call to schedule a surgery date.  We're expecting late May/early June.  Will let everyone know when we have a date and what we might need in the way of help.  

Thanks for all the meals and visits over the last couple of weeks - we've enjoyed them all.  Our freezer is full of good leftovers from the excess.  

I hope every mother I know has had the Mother's Day they were hoping for; that those of you who aren't mothers were able to appreciate/thank your mother; that those of you whose mothers are gone found ways to remember and cherish your memories with them.  

Love to all,

Sarah

last chemo - cancer cells be gone!

Chemo is happening as I write.  I'm receiving the red devil, otherwise known as adriamycin, and now cisplatin, the chemical mix with heavy metals, including platinum.  Karl is here, keeping the conversation going with the nurses.  So I probably wont be back at work till May 11th, unless I decide to get some files and try working at home.  Will post some requests on LHH for meals, if anyone is inclined/able to bring something over.  I  may try having visitors now and then as well, to keep the loneliness/depression at bay when I'm home alone during the week.

Thanks to all over the last few weeks who brought delicious and ample meals.  As always, we are an appreciative audience and enjoy all the goodies and the effort you all make.  Thanks also for new hats (Beth E. and Stephanie!) which I love, and living plants (Karen and Dad), and a cute book about YoYo, the Norwich Terrier who was kidnapped and returned (for ransom) in Provence(Lynn)!  Thanks also for the recycled New Yorkers (Catherine L.) and other magazines, Dad.  

Pray that the last of the cancer cells are on their way out of my body for ever!

Love and hugs to all.

Sarah

Waiting

So I did get talked into doing the last chemo by my oncologist - accepted protocol, best outcome, etc.  I could have fought and refused, but I had decided not to - I do want the best outcome, after all....Now I am waiting to hear whether I have chemo today or not.  My white blood cell count is low, so I expect not, but it is now nearing 8AM and the appointment was set for 9:30.  It would be nice to know.  I guess I'd better shower and get dressed and be ready to go get poisoned or go to work in a bit.

Once again, I will try to post more often.  No news means I am bored by this illness and have  nothing new to report.  

Happy May Day tomorrow!

xoxo - love to all

Oops - it's been more than 10 days since last post!

So here's what's happened and why I haven't posted in so long:

5th chemo was supposed to happen March 29th or 30th or April 1st, but WBC count was too low, so it was postponed till April 9th, Karl's bday.  Have felt like shit since then, spending a lot of time on the couch feeling nauseous and very low in energy.  Still manage to get dressed, walk the dog, go to the store (on a much less frequent basis) and get to church.  Was supposed to be recovering from chemo during spring break - spent the week instead feeling annoyed at the WBC count and generally dragging around, doing an errand or two a day and pestering Erik to apply for jobs.  So now I've been away from my wonderful people at work for two weeks, and I miss all that good energy and those hugs!  Will be back for them next week.  Last chemo is scheduled for April 30th.  I've thought about not doing it - will think more about that next week and talk with the docs if I'm seriously inclined to say no.

This is what I wanted to say this week:  I HATE CANCER! I HATE CHEMO!  BOTH OF YOU GO AWAY AND DON'T EVER COME BACK!  

That's all for now - will try to be more regular...

My first drum!

Woo-hoo- I got a djembe today!  My drum circle teacher went shopping with me today right after class (she volunteered) and helped me find a nice quality, good priced wood djembe with rope tuning and (maybe) a real goat-skin head (the clerk said it was synthetic, but the website indicates otherwise).  If you want to see what it looks like, go to www.tocapercussion.com/product/synergy/rope_tune_djembes.html - mine is the sdvnp 12" hand carved, and it didn't cost me $300 - I got it for $100!  So if anyone has a drum or any other percussion instrument or anything that you want to play (non-professionally, non-judgementally), let me know and we can start our own drum or rhythm or noise or cacophony circle.  Karl's been testing it out; Erik was not impressed.  I haven't had a full session with it yet because I'm all worn out from the day, but I will try to play it every day.  

New chemo date, if WBC count is high enough, is 4/9, Karl's birthday.  Will post some meal requests for the following week on LHH.  

That's all for now.  Mischief wants her dinner and is licking my hands or the computer rather persistently.....

Minor setback

Chemo didn't happen today.  We met with the oncologist yesterday, and my WBC count was too low to do chemo, which is a totally normal thing.  So they'll wait a few days, I'll have another blood test, and probably do the treatment sometime next week during my Spring Break.  I'll have to do a few extra self-injected shots of Neupogen after this treatment and the final one to help boost the count.  So, it's not a big deal, but the minute I got this news, I felt all my symptoms coming back in full force, and my good mood vanish.  Stayed home today and will tomorrow too, figuring I should be resting extra to get my strength and white blood cells back in full swing.  Felt all weepy and sorry for myself because now my schedule is off, and now I'm worrying that I won't be finished with radiation by the end of the summer and will have to be dealing with that once school starts back up....like I said, patience isn't one of my strengths....We found out yesterday that radiation will probably be 5-6 weeks, five days a week...well, at least it will be in Kaiser Oakland's brand new Cancer Center and we won't have to drive all the way down to Hayward every day for a ten minute procedure!  

I do have a permanent bouquet of pussy willows on my piano, and I love them.  I will go get myself some imported forsythia - good idea Martha!  I think pussy willows blossom into dangly little seedy things, nothing special.  Lilacs and lily-of-the-valley are two more plants that don't grow well out here, but someone at school brought in some lilac branches, so they do exist.  He said it doesn't grow heartily, but they do get the lovely, fragrant blossoms.

The limitations have begun on the son's WoW (World of Warcraft) time.  We gave him a three day schedule on Monday, and will have to discuss (tell him) what the weekend schedule will be this evening.  He will not like it at first, but I think he will eventually see that we have some sense and these limits are really for his own good!  We're basically cutting his time in half, to about 20 hours a week.  He'll even have one whole day computer free!  I've noticed the benefit and change already - he's not rushing home to jump on the computer; he's listening to my requests, like doing his homework today in the living room while I sat reading, and doing the dishes, even though he didn't really want to, and staying and watching a bit of Oprah with me, opening up a discussion about our finances (Suze Orman was on)...I love being reminded what a great kid he is - smart, interested in the world around him, interesting views, and funny.

Thoughts to Karl Sr. today on his and Eleonore's 52nd (or 53rd?) wedding anniversary.  It must be very hard to be experiencing this anniversary without her, after so many years with her.  I hope some of her blossoming flowers are reminding you of her, Karl, and giving you some comfort.  

Did anyone get a good April Fool's joke done on them or do one?  The ones I saw at school yesterday included a posting from the principal that the school was switching to "Virtual Sports," and a sign on a door that said "Class cancelled.  Teacher won the lottery and went to Tahiti."  

Will update when I have a new chemo date, and perhaps put in some requests for meals on LHH then.

Boredom and impatience

I am bored with chemo, its symptoms, and talking about it.  

I am impatient - waiting for treatments #5 & 6 (this Thursday the 1st and April 23rd), recovery time (4-6 weeks for white blood cells to recover) and surgery.  But, as my mother said, do you know anyone who's good at waiting?  I guess not.  So, let's change the subject.

Emily was here for nine lovely days of her Spring Break, leaving today.  It was great to have her here, baking cupcakes, cookies, and challah for us.  She did messy creative projects (tie dye and started a sewing project that she didn't finish) and weeded in the garden.  She did start complaining about lack of structure, so I guess it was time for her to head  back to school.  

The spring weather is lovely.  We have daffodils in the front yard and people are cutting their weedy, overgrown lawns.  We don't have forsythia and pussy willows, and I miss them greatly!  

My son and husband and I are having major battles over the teenager's time spent on World of Warcraft, what constitutes an addiction, and how to limit the time.  Unfortunately, this is a fight that has gone on for too many years, and I am sick of it.  We may spend our Spring Break dealing with the son's wrath and rage as the game time is severely limited, if my good reasoning prevails.  Yes, I'd rather listen to Erik rant and rave (and calmly not engage myself in his histrionics) than leave him doing this extremely sedentary, addictive game for 6-8 hours a day!  And it's a distraction from my own boring condition right now!

Thanks for the last delicious rounds of meals that came in from our next door neighbors Ann and Haruo, down the street neighbors Rebecca and Robert, and far away neighbors Lorene and Michael!  All were great, different, and much appreciated.  Thanks also for new, hand knit scarf and hat Lorene and crocheted hat Beth!  And all the healing hugs I get from work.  And Martha, your words are healing and always make me feel so good.  

Hugs and kisses to all of my faithful followers!

Sarah

Good news bad news

We met with the surgeons at Kaiser Oakland this afternoon and were very reassured by their knowledge, skills, and bedside manner.  Dr. Grannelli brought in his anatomy book and finally gave me a picture of what's going on that I can understand.  He explained how the surgery would be done and answered questions.  Dr. Patel also came in and explained and answered some of our questions.  So the good news is they feel this surgery will go well, have a good outcome, and I will recover quickly.  The bad news is they want me to finish the two more rounds of chemo to make six, under the assumption that the tumor may shrink more and the more it has shrunk the more likely they'll be able to leave my veins and arteries in their natural state.  I'm not looking forward to two more rounds of chemo.  Last chemo 4/23, surgery maybe a month later - end of May early June.  4-5 days in the hospital, a good 10 days post-op at home before things start to feel somewhat normal....

Anyway, it is all good, basically.  I just have to readjust to the 2 more rounds of chemo.  

Post chemo, round 4, perhaps last one?

It's possible that Thursday's chemo may have been my last, at least for a while!  The thoracic surgeons believe that now's a good time to resect the tumor.  (Now being 3-5 weeks post-chemo.)  We'll have more details on Thursday when we go in to meet with one of the surgeons.  Exciting to think that surgery could be done by the end of April, recovery in May-June, radiation after that, and then we'll hope for smooth sailing!  

In the meantime, I'm feeling pretty crappy - my hemoglobin and white blood cell counts were low on Thursday, in addition to the usual nausea/sometime headaches thing.  At least now I know that it's all for good - that the toxins are killing the damn spot!  

Thanks to good neighbors Rebecca and Robert who have been bestowing us with lots of lovely meals over the last couple of weeks - some in cozy feeling Ball glass jars, others on a hot plate, feeling and tasting like they just came from a local restaurant!  

Thanks also to Margery for the trips to Trader Joe's - I'm sorry I didn't thank you sooner, and I owe you for the last delivery!  

Also thank you to all my devoted blog followers, especially Martha, for your wonderful comments that lift my spirits so much!

We're still enjoying each and every meal that comes in from our LotsaHelpingHands supporters, as well as the generous restaurant gift certificates from all my co-workers and friends at both Ocean View and Albany High Schools.  I feel very blessed and appreciated, and that can only be a helpful and healthy thing when it comes to healing!

I look forward to seeing my work friends on Monday, the 23rd of March.

Take care,

Sarah

  

UCSF Chief of Thoracic Surgery

The doc at UCSF basically confirmed what my oncologist briefly told me yesterday - a few more cycles of chemo and then surgery.  He said its totally encouraging that the main tumor has basically reduced by half, that it looks more necrotic, and that the superior vena cava is no longer obstructed.  The surgery will be tricky but totally doable, he said, and the outcome should be good, with maybe a bit of radiation afterwards.  He even called me young and healthy (he's our age, at most), which was nice!  It is all so positive and hopeful, but today I am exhausted.  We drove to the city this morning (light traffic), parked, went up to the doctor's office, were placed in an exam room right away, and then waited almost two hours before he showed up.  He talked with us for 20 minutes or so, was very helpful and informative, and we were done.  We are spoiled by Kaiser, where we rarely have to wait more than 20 minutes for a doctor's appointment! 

 If the news isn't very different on Monday, I may not post again that day. 

 I'm going on the assumption that chemo session #4 will happen on Thursday.  And hoping I can break the cycle of nausea, thanks to some tips from Sharon, another cancer survivor!  

Where do those nasty dead cancer cells go?  Eaten up by the immune system?  Flushed out?  Something like that, I think. 

Happy weekend to all!

Good News from the CT scan!

Yes, its true - the chemo is working and the tumors are shrinking!  The larger one shrank from 7.5 to 4.5 (cm, I guess), and the smaller one from 6 to 5.  Hooray!  The Kaiser oncologist thinks the thoracic surgeons will want to do three more rounds of chemo, but we'll find out on Monday.  I am so relieved to know that I'm not suffering through all this crap for naught!  

Thanks for all the prayers and good wishes and healing thoughts - they are obviously working too!

More news to come - I will post if there's any news from the UCSF doctor tomorrow, but for sure on Monday after meeting with our oncologist.

It feels good to feel positive again!

Blah

Blah describes how I'm feeling; both physically and emotionally.  Low to no energy, headaches, nausea.  Still have an appetite and manage to get Mischief out for her three walks most days, so its not all bad.  I just want to feel better and go back to work!

Change of dates, additional event:  CT scan now on Thursday, March 5th; consultation with UCSF on Friday, March 6th.  Appointment with Dr. Reddy, oncologist, still on Monday, March 9th.

Happy Birthday to my dear mom on March 5th!  

My dear sister will be here for a visit from March 7th-11th.  I look forward to some good sibling time with her!

Downloaded some guided imagery meditations and affirmations regarding cancer and chemo (and general health and well-being and stress management) from Health Journeys yesterday.  Good stuff.  One of the affirmations is something like "I thank cancer for allowing me to learn the strength and power of my body, and now it can leave."  I like that.

Thanks to Beth E. for the most amazing gift of a quilt with well-wishes and sweet messages from students and teachers and staff at school - it is gorgeous and comforting and warming in more than one way.  In addition to the words written on the quilt, there is beautiful fabric, from Carla, that she brought back from Ghana.  And how could you all have know that it matches my purple fuzzy robe?  

Thanks also for all the good meals that came in this week and last - we are quite spoiled by all the good cooking, and I always have something nice to eat for lunch (leftovers!).  

Happy March, love to all, and I hope to have good news next time I post.

Monday, Monday

A couple of days before Thursday's chemo, the nausea returned, so my pattern of good days was thrown off.  Managed to avert the serious nausea/headache on chemo afternoon, but forgot to take the Emend the next morning, which allowed the nausea to get ahead of me and take over.  Pretty much nausea every day, with mild headaches thrown in now and then.  So I'm on the couch, napping, reading the paper, and watching bits of TV.  Not particularly enjoying it.  This is probably due to my low WBC count.  In two days, I begin self-injecting Neupogen, for five days.  Perhaps that will make me feel better.  In a perverse way, I think self-injecting is sort of cool.  Grab the belly fat, poke the needle in, and push the plunger (probably not the technical term!) and in goes the medicine.  I tried it at the clinic, because I wanted to make sure I could do it, and it was a breeze.  The only thing that hurt was the sterile water I used as sample drugs.  Stung.  

Watched most of the Oscar's last night, which I hardly ever do!  Very strange event.  All the women are thin, beautiful and/or famous, and why do Americans live for this stuff?  The guys don't have to be as beautiful, and they don't get critiqued for their clothing choices - is that fair?  Anyway, I was glad to see Kate Winslet win, though I didn't see The Reader (read it quite a few years back), and loved that her dad whistled and then covered his head from the audience!  Nice that Slumdog won, but I think they went overboard giving them so many awards...and really glad that Sean Penn won and spoke up for gay rights, as did the writer of Milk.  Hollywood does do some good things now and then, despite all the glitz  and glam and posing, thank god.

Thanks to all for the meals that keep coming in - we enjoy the variety and creativity of all the cooks and shoppers.  Thanks for those keeping me cheered up with flowers - they are especially nice to look at on these gray days.  And thanks to all who send well-wishes, thoughts of healing, or prayers, whether silently or aloud - I really need them now.

No news is...boring!

No news is good news?  In my case, it feels boring, thus I haven't written lately.  

Chemo cycle #3 on Thursday, 2/19.  

No school/work this week.

CT scan on Friday, 3/6,

Oncologist appt. on Monday, 3/9.  If tumor(s) shrink, surgery.  If not, 3  more cycles of chemo.

Emily was home for the long weekend.  Lovely.  Lively.  She brings the family together in a very positive way.

We visited Karl and Mel and their sweet puppy Cindy yesterday, saw all the effort they put into their new home, and it looks beautiful!  Played Apples to Apples.  Fun game.  Nice visit.

Daffodils are blossoming in my house.  And some mini ones out in the garden.

I love the rain, but walking the dog in it has been cold and not so much fun.

Drumming on Saturday was great.  

Cancer sucks.  So do migraine headaches.

But I do make lists of gratitudes in my head and last night's was long.  

#1 Rainy nights.  #2 Smart kids.  More some other time.  

Figuring it out

Now that I'm getting close to round 3 of chemo, I'm getting it figured out - Day 1 is bad by the end of treatment (headache and nausea, pretty severe), Days 2-3 are okay, Days 4-11 are rough, and Days 12-20 are pretty good!  So I'm at Day 14 now and have had a decent few days at work.  My wellness gauge is whether (and when) I "hit the couch" on any given day, and I haven't hit it this week any earlier (if at all) than 7PM, I'd say.  Very good!

Emily comes home tomorrow for a long weekend, which will be lovely.  We'll have a Valentine's Day cake, Zachary's, maybe head to a beach for a family outing, and if Emily has any say in it, have a family game night!  

Thanks to all the folks at AHS for their extremely generous gift and lovely thoughts - I am overwhelmed by all the kind-heartedness everyone has expressed in so many ways!  Thanks also to friends who have brought dinners this week, who have loaned movies and books and donated comfort magazines, who have called  to commiserate, listen, or just chat, who have brought flowers and living plants, or who have given me hugs.  I'm also grateful for my regular blog followers and their consistent, loving comments and thoughts.

My guys are back!

Karl and Erik arrived home safely this evening - nice to have them back!  A bit worn down from the funeral and the cold, which is to be expected.  The cycle of life and death continues; time marches on, but death never really comes at a good time.  I am so sorry to have missed the activities back east, both sad and happy ones, but am glad (or hope) I avoided the germs and took the time to rest and recuperate.  Emily got back to school with a cold/flu - no fun for her.  

Thank goodness for friends that come and hang out on the couch with me and watch movies!  I love them dearly!  

Thank you Athena for the soup and corn muffins this week - they were just what I needed.  And thank you Cosette for the food and lovely growing purple heather.  

All by Myself

Enforced rest and quiet is a good thing.  I am alone (as alone as one can be with 3 pets), but not lonely.  Talking on the phone with friends and family for at least an hour a day, checking email, reading the newspaper,  lying on the couch watching TV, eating soft food and drinking tea, walking the dog - that is my typical day.  And that's fine with me.  Did some on-line shopping too.  Bought a blender from Target.com, the Cook's Illustrated Best Buy, for only $45 + S&H.  Also ordered a Baggalini backpack/sling bag for $34 + S&H.  Good deals!  Today I was hooked on the HGTV channel - it seemed just to fit my needs.

I keep wanting to pick up the phone and call Eleonore, especially today, when everyone was saying goodbye to her.  I haven't been able to do that for a few months....the finality is - well, so final!

They all said goodbye on a cold, cold day in NY - in the teens with crunchy snow.  A warm luncheon at one of Eleonore's favorite restaurants was held after the funeral - something I'm sure she would have wanted.  Everyone enjoying a meal, reminiscing about this strong, creative, beautiful, active, intelligent, interesting, vital woman - mother, wife, grandmother, aunt, librarian, friend, neighbor...perhaps someone even had an extra "little sliver" of cake in Eleonore's memory!  She is gone but she will not be forgotten.

Staying home to take care of myself

I made the tough decision, with the help of family, friends, and doctor, not to go to the funeral.  The rest of the family all leave tomorrow for the east coast and I'll stay behind with Mischief and the cats to keep me company and structure my time.  (Walks and letting the felines in and outside all day long.)  I will miss being there to say goodbye to Eleonore with the whole family, but I will say goodbye in other ways and at another time.  I am hoping to write some words for Eleonore, but I don't know if I can come up with them before the funeral.  If not, another time.  We all already miss the strong woman Eleonore was, with all her energy, her ability to keep the family fed and busy and enjoying life, even when she was not feeling her most energetic or well.  She's someone not many of us can live up to!  

I got a wig today from the American Cancer Society.  As Erik said, it looks fake, but I say it's another option, and once I get it styled it may look a bit more natural...or not.  Also figured out how to make and tie a casual turban from a t-shirt torso - pretty cool!  

Goodbye to my mom and Erik tomorrow.  I've made a vow to not get too lonely while everyone is back east, so I will be calling to chat, ask for company, whatever.  Feel free to call me as well.  If I'm not up for talking, I'll either say so or not answer the phone.  

Too Sad

Karl's dear mother, Eleonore, died last night, aged 83.  We are already missing her greatly - she was a wonderful mother, grandmother, mother-in-law, and lady.  Her mind and soul were strong, but her body just couldn't take all the ailments any longer.  The family is gathering round Karl Sr. and funeral arrangements will be made soon.  I am waiting to hear what my doctor recommends as to whether I should get on a plane, fly across the country, and attend the funeral.  I will try to abide by her advice.  I feel like a mess.  Crying, bald, prednisone puffiness, general malaise and fatigue, and yet wanting to carry on and attend to the family needs...Well, if I do have to stay home, at least I'll have Mischief, Pearl and Oreo for company.  Small consolation.  

Erik questions why we have to worry about appropriate clothing for funerals.  Why do we have to wear dark pants - what's wrong with khakis?  Convention, we explain, but still...

Annie has extended her stay for a day, which is a godsend.  Her company means the world to me right now.  Emily will either meet us back east or come up and we'll all fly out together.  

Please stay tuned or check lotsahelpinghands.com for changes in dinner needs this week.  I expect we may not need anything from Wed. - Sat. or Sun., but will post it on the site.

Take care all, and remember to tell your loved ones that you love them every day!

Chemo Treatment #2

The treatment yesterday started out much better than the previous one, mostly because I didn't go in feeling sick!  So all was fairly mundane, almost pleasant!  I was actually feeling well enough to write some thank you notes, and would have posted on my blog if the hot spot had been working or I'd remembered my Internet plug. Betine the Canine Companion Oncology Clinic Perker-Upper was there, in all her black lab/golden retriever glory, with pretty brown eyes and the softest black ears and charm and comfort.  My mom and Karl were in and out with me till about 12:30, when they went off for lunch and I took  a meditative/healing music nap with my iPod.  By the time they got back, I only had 1/2 an hour left (it went faster this time!), and that's about when my headache and nausea set in for the remainder of the day and night.  Not fun, but I got through it.  

Woke up this morning with a headache, which progressed into nausea, and had to head to the dentist at 10:45, but actually ended up leaving the dentist feeling better than when I walked in!  If anyone needs a dentist recommendation, Dr. Aaron Escalante is the best!  He is sweet, caring, has a great staff, and also has the latest in technology.  He was able to do my crown, start to finish, in an hour and a half - no temporary or anything!  He's got a cool new computerized machine that takes pictures of the tooth space, then configures a new tooth on the computer and mills it in a machine from a ceramic block - wow!  Only 5% of the dentists in the US have this technology.  No, he didn't pay me for my testimonial.  He even came out to meet my mother and talk about her rare odontogenic carcinoma ordeal and survival.  

I felt so good after this  dental procedure that mom and I went out for sushi at Katana Ya right afterwards.  Yummy Miso, Salad, and Sushi B combo, and mom saved most of her California roll for Erik.   

Thanks to everyone who has filled up my lotsahelpinghands calendar of meals for the times requested:  we really look forward to and enjoy the meals we get from all the great cooks and take-out shoppers! 

And I do now how enough caps for every day of the week, thanks to Rebecca, Tina, Patty, Jenifer and my mom.  Plus I learned how to tie a scarf into a turban and make a t-shirt cap, but I think I already said that, didn't I?   

When I'm done with the caps, I'll pile them on my head and pass them on to the next person going through chemo.  Speaking of caps, we did start, but not complete, the haircutting.  Got to a very short boy-cut, but it took way longer than expected (lack of experience with clippers - they are not as easy as they look) and we both finally got tired of working on it, Annie and I.  Since the longish hairs still hurt, and I'm still shedding, we're going to finish it off with complete buzz/bald today or tomorrow.  Once we got started on the actual cutting, it didn't feel as bad as the anticipation of it had, and it actually feels good and is sort of fun to look at!  (Except where   its still a bit straggly.) I tried out iMovie during a lot of the haircutting, so if I can figure it out, I may try to add a few thumbnails to the post....

Well, Happy Friday to all, and good weekends, and I send you warm (69 degrees) and loving thoughts if you're in the cold east coast, and the same for your locals, but you know how nice the weather is here!  For us west coasters, send some rain or precipitation, you easterners!

Look Good, Feel Better

That's the name of the American Cancer Society class I took today - lots of free cosmetics, free wigs (if you liked one, which I didn't), and a cosmetologist and esthetician volunteering their services to a roomful of  women with cancer in need of spiffing up.  The esthetician was a five-year breast cancer survivor.  The make-up tips were good for a minimal make-up person like me, especially those on how to pencil in fake eyebrows and make your eyes look bigger when you have no  eyelashes.  I also learned how to tie a scarf into a turban and how to make a cool, feminine do-rag sort of head covering out of the torso of a t-shirt and some twisting!  I will try to figure out how to post some pictures to model all these fun head ornaments!

I received 4 new close-fitting hats today, and 4 more fun hats, including a green Mickey Mouse St. Patrick's Day beanie!  Thank yous to Mom and Jennifer for the personally sewn/knitted ones; thanks to Rebecca and Patty for the lovely cashmere hat and bag of 5 hats, respectively.  

Mom is here and that is lovely.  She loves me, she gives good hugs, she loves  my wheezy dog and temperamental cats, she loves my husband and son (and daughter, whom we wish were here, but we understand), and she's my sweet mom!  She also knits, is going to make applesauce and Jewish Apple Cake and take Mischief to get groomed at PetCo!  And she'll hold my hand and put her cool hands on my forehead when I feel bad.  What more could one ask for in a mom?  Unfortunately, she's always cold when she comes here.  Too bad we're not having that warm streak we had just last week or two weeks ago...But I promise to keep the heat turned up to 68 degrees for her, or even splurge and set it to 70!  Thank you Jane, for picking my mom up at the airport while I was at my class today.

Jane and I saw Revolutionary Road yesterday.  Great movie, but don't go if you need to see something cheery and uplifting.  Very heavy duty.  I really want to hear from my mom and dad after they see it, if they want to...they were doing the same thing during that era (1950's), as many of our parents were...how did they feel about it, did they stop and question, feel discouraged, disheartened, disappointed???

Yoshi's dinner and concert tomorrow evening, to hear AHS's Rhythm Bound, which I'm looking forward to.  Cosette and Scott's son Christian plays baritone sax, and I don't know who the vocalists are, but it's bound to be good (pun intended).

Denial

Well, I am very good at denial, delusional thinking, eternal optimism, ignoring the obvious, ignorant bliss - one can call it any number of things - fooling myself until whatever it is hits me over the head, or in this case, on the head, literally.  My hair is falling out!  It started in earnest yesterday, when I noticed big chunks coming out while washing it, brushing it, if I put my fingers together lightly and pulled, on my shirt, etc.   As Elyse said, "you're shedding like a cat in summertime!"  Erik was coming from  behind me this morning while I was standing at the kitchen sink, about to hug me, when he paused, with a funny look on his face..."you have hair on your shirt, Mom."  So take the hair off, I say, to which he replies, "no, a LOT of hair!"  As cavalier as I had been about shaving my head and not wearing a wig, now that the time is near me having to shave it, it really feels creepy!  Quite possibly, this might be one of the hardest things to face (no pun intended) so far.  I'm going to try to put off shaving (or buzz cutting) until after work on Wednesday, just so I don't have to deal with everyone seeing me right away - will see if it doesn't all fall out first.  I am still saying I'm not going to wear a wig.  In the market for hats - light-weight (I'll overheat fast if its too warm), form-fitting, and BIG!  23" is my head size, to be precise.  Any color is good - I'll need one every day, so I'll be looking for a wide palette of colors. Thanks to my mom for getting the first one to me before the hair comes out altogether - it's a wonderful, multi-colored gold, green, blue, orange - a beanie with a rolled edge.  And thanks to Tina, who has reworked a nice green crocheted cap, and reworked it again, because my head is so much bigger than she expected!  I'm thinking hers will be done just in time for Wednesday's cut.  Okay, that's all about my hair until I do cut it, I promise.

I did have a pretty darn good week, considering I had a root canal on Wednesday!  That went smoothly and I was able to keep ahead of the pain - thus relatively little of it.  Worked every day (except Monday, MLK Jr. Day), mostly all day (Thursday only till noon), and Karl and I were even able to go out to dinner (Pasta Pomodoro) and a movie (Vicki Christina Barcelona) last night.  I did almost fall asleep a couple of times during the movie, but made it and managed to stay up till 10:30PM.  Enjoyed the movie - a classic Woody Allen in a different (yet beautiful, as always) setting (Spain - the new France?), with gorgeous women (he likes Scarlett Johansson), a handsome Spaniard, a crazy artist, and himself (he was the Vicki (? or Christina?) character - the brunette who wasn't Penelope Cruz).  Having the story narrated was an interesting touch - Karl thought it made it almost children's story-like, and the beautiful Spanish guitar was a change from his jazz and classical music.  Worth a view, in my opinion.  

Today was Healthy Beats drumming session two.  Loved it again - wish it was every week!  The energy and positive vibrations are palpable and I love feeling musical (I can't even read music).  Once again, I invite anyone who reads this in the Bay Area to come to this class - $20 for members, $40 non (for 4 weeks - they'd pro-rate it), every other Saturday, Richmond Kaiser, 901 Nevin Ave., 12:30-1:30PM.  We especially need some men, I think.  For some reason, its only women, except last week when someone brought along her fiance.  3rd Floor, Bldg. B, Physical Therapy area.  No, I'm not paid to advertise.

I am so looking forward to Monday and my Mom's arrival!!!  Nothing like a mom to soothe the soul and comfort the body - with cold hands and warm hugs.  

No pain, relavtively speaking!

Yesterday morning, during my visit to an off-campus classroom, I ran out of steam.  Had to sit down, felt exhausted, and got chills during the walk home.  Managed to stay and work till noon, but then had to come home and rest till the endodontist appointment at 2:30.  Although the procedure was a little challenging, I think, dentally speaking, I survived and the doctor thinks it will be alright.  Here's something you don't want to hear when someone has sharp instruments near you: "I don't think I want to go there because then I'll be drilling blind and might perforate it..."  Yes, that's what I heard the dentist say, as I sat there with my iPod plugged in and a rubber dam stretched across my mouth...Then I ask him if there's some other pain reliever he can give me, because the Vicodin made me nauseous, and he says sure, and gives me Tylenol #3, which is basically still Vicodin, maybe just a lower dose....

Was able to make it through almost the whole day today - till 2:30PM!  I'm pleased with any amount of work I can get done.  It's also really nice to  be somewhere where everyone tells me they're happy to see me!  

Huge thanks, muchas gracias, and merci beaucoup to my friends at Ocean View for their exceedingly kind and generous gift - especially to Beth for planning and organizing it!  You have no idea how much it means to me and my family to be supported in such a caring way right now!  

Two more episodes of Freak & Geeks left - what am I going to do when they're over?  What could possibly replace that show?  The episode I watched yesterday was very sweet and funny - all about dating, kissing, playing Spin the Bottle.  Okay, I want to know:  (probably only to those over 40, I would guess) did anyone actually ever play spin the bottle?  I know people talked about it, but I started wondering if it was really just an urban myth...I wasn't cool enough in junior high/middle school to go to or have boy/girl parties, and by high school was way past that stage of "romantic relations."   In the F & G episode, they had a rule that if the same two people were made to kiss by the bottle's direction 3 times, then they had to go spend 

"7 minutes in heaven" behind a closed dooor.  If anyone can confirm that they did this - not that your friend said they did - I will believe it and not call it  a myth.  Otherwise....You can remain anonymous, if necessary.  

It's a cold and a rainy day.  Just what we needed.  Bring us another week of this, and we might get our resevoir levels back where they need to be.

Obama's Day!

Exciting day for all of America, for the whole world, and for  me!  Working at a school, I was able to watch a lot of the inaugural lead-up, and, most importantly, hear the swearing-in and Obama's speech.  Amazing to hear the man speak, every time.  I'm watching the Neighborhood Inaugural Ball on ABC right now, and just watched the President and Michelle dance to "At Last" (I think that was the name of the song...).  It was so sweet and real to see them dancing, just like everyone else dances - talking to each other, singing along with the song, looking like they felt just a bit awkward dancing in front of everybody.....

My excitement was making it through a full day of work!  Although I am not 100% feeling right, I felt great getting through the day, accomplishing things, getting tons of hugs and well-wishes, and getting a sliver of Margarita's yummy birthday cake!  (Thanks for sharing & including me!)  I hope to make it through this week and up through next Wednesday at work, only to start the chemo process (cycle #2) on Thursday the 29th.  Part 2 of root canal tomorrow at 2:30PM.  Glad to get it out of the way.  Maybe this time I'll be able to keep the pain under control.  

Congratulations America!  

Congratulations me!

A good day!

Wow, what a difference it makes feeling just a bit better!  Tooth pain is gone, for now, as is heartburn, and nausea was just a bit around the edges.  So I didn't hit the couch until 6PM, and that was me forcing myself to lie down and rest.  Kira and Liam came over for a visit around noon today, which was great.  Nice to soak up some precocious kid energy, catch up with Kira, and then talk about our favorite grossest Dirty Jobs episodes.  Thank you Kira for all you've done calling people for the lotsahelpinghands sign-ups.  And thanks to Jane for successfully signing up for a dinner delivery!  I hope it wasn't too hard to figure out.  After Kira and Liam's visit, I made a run to Target - I needed a fix!  Got Erik some new tees, got a glass teapot so I can make those pretty flower blossom teas that Leonora gave us for Christmas (they just didn't look right in a Pyrex measuring cup), and the oh-so-important Method Smarty Dishwasher tablets that are only sold at Target (do I get paid for plugging a brand and store?)...

Took a half-rest on the couch till Jane came over, and spent a while with her, showing her the beauty, simplicity, speed and ease of my MacBook, convincing her that she could indeed use one if she so chose, then watching Oprah's Obama-fest.  Erik made a lovely dinner of shredded Brussels sprouts, onions and Parmesan over cracked-pepper fettuccine, and Gossip Girl was good and dishy!  I'm hoping that Sunday was the bottom for me, in terms of feeling bad, and the remaining week and a half till the next chemo will be this good or better...Looking forward to getting through as much of a full day at work as I can tomorrow!