thebluefolder

May 3, 2012

Ten golden toes

You know that song when I’m 64 by the Beatles, well they were off by 40 years because I feel like I’m 104.  Cancer therapy is a bitch!  As Armando would say in his broken english “I cry, I cry”.  Just typing this after my third hot bath soak, today hurts. Whine whine whine…Oh poor pitiful me!  I wish it was wine wine wine, give me Rombauer, Frank family, anything from Italy…Instead it’s meds meds meds.  Where is my sense of humor? Not much seems funny, I feel like a wounded animal that wants to crawl under the deck and lick my wounds. I have my brief moments where I put on a hat and a pretty dress, I try to enjoy this life of farawayness.  That is me far away from you. (Tears down cheeks)

As strange as it seems or as much as I whine considering what I am going through physically I am doing great! LOL, no really I am!  I think. What else are you going to do but get up each day and do as much as you can under the circumstances.  Most of the time I don’t know what the circumstances are untill they hit me in the gut or the feet which ever comes first, but I know there is always tomorrow and when this is all over.  Brings to mind that stupid saying “This too shall pass”, must say I’m tired of hearing that.  Yes it is passing… right out my a–!  ( Sorry couldn’t help myself )

Not nearly as many bald women as I has thought there would be…other than the women at the chemo center the only one I have seen was in the dog park and she informed me it was not due to chemo but that she was “Butch” (Lesbian for those of you who don’t know the term.) Someone told me Washington D.C. is filled with bald women.  Strangers like to comment “You look beautiful” “How are you doing” “My daughter (wife Etc.) is going through the same thing” Etc.  Not fun to be bald, not a badge of honour as some women have said they feel.  Wig is hot, wig makes a rash, wig feels like I am a different person. Hat on, hat off, hat on, hat off, hat on, hat off.  Hat off feels better but then I feel like I look like a sick person.  Which I am, LOL.

Can’t wait for the other side…the other side of cancer that is.  I feel much like a monk  in my own little world trying to live amongst the rest of the world marching to a different beat. I long to be like I was yet I must do my time.  I feel bad for Miranda (My daughter) having to bare the brunt of the change in Mom.  It’s she and I, day in and day out.  I try hard to fake it, to shine despite my waning self but I know she (Tears down cheeks) has to suffer the most along with me.  Hopefully we can see Paris together when this is over.

“How are you” “What is it like” “Is it like you imagined it would be”  Question questions questions, how to answer the questions. Each day would have a different answer and when this is all over I will have a different answer I’m sure.  For me the most surprising part is the “farawayness”. Partly because some physical items have me distracted, partly because of  worry due to financial issues or worry that something pressing has not been tended to.  This too shall pass, LOL.

I have ten golden toes and I am thankful. Got a pedicure with Miranda and painted them bright shiny gold,  was told not to by the doctors due to infections etc., but I did it any way and am so glad I did.  I soaked the extremely painful little buggers for the third time today in the tub and they looked so pretty.  Apparently this type od chemo therapy (Taxol) can make you finger and toe nails fall off, so I am grateful to have ten to polish thus far.

Feeling feeling feeling grateful for so many blessings from my peeps, where would I be without all of them to send good juju my way, I can’t imagine.

Well Chemo #11 tomorrow

And now for you listening pleasure a link to one of my all time favorite pieces of music.  http://www.youtube.com/watch?v=B-mLkzFUzTA

XO S

(Fingers hurt too much to edit/spellcheck, sorry)

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April 8, 2012

I have a dream

Chemo #7 complete, tumor is almost gone! Wish I could just take my ball and go home now.  Getting into the rhythm of this portion of the treatment, dealing with side effects as they come and go.  Funny I feel so normal, yet so abnormal. Well we all know I’m abnormal but you know what I mean. Trying hard to get on with my life despite the trials and tribulations associated with cancer.   Actually been keeping busy, getting out a lot during the day, early to bed and up early to get at the day while I have energy.  Noticed I am becoming OCD, trying to stay ahead of my lack of stamina and chemo brain.  Am really surprised how much time it takes to take care of a cancer body.  My body and my brain are slower yet my soul is soaring with hope, love and gratitude.

     I’m in this large water canal filled with brown murky water, swimming along a giant old rusty white ship trying to figure a way out of the massive canal, thinking I can swim under the bow of the ship to get to shore on the other side, my legs get pinned under the ship as they are sucked into some part of the motor, I struggled to break free and wonder why I did not realize this would happen, of course the water would be sucked in the front end and then out the back, somehow I break free, I decide to climb up the front of the ship hoping someone will see me, end up very high on a small ledge, no one sees me, with nowhere to go but back in the water I jump, falling, falling, falling, falling, how could I have not realized how high up I was. I decide to swim to a shore I see in the far distance, I close my eyes and focus on fighting the current, when I open my eyes I am swimming in a dark walled tunnel with trains tracks overhead and goose poop floating thick in the water, I keep swimming and wonder if I well die before I reach the end of the tunnel which I cannot see,  finally light, I swim harder excited to burst free, I come out to find the banks covered thick with black beery brambles, they have also grown into the water shore to shore, nothing to do but swim right through them, it’s gonna hurt, I can do it, here goes.

Getting out every day for the mandatory walk for myself and the dogs, yesterday I ran into a women who really wanted me to contact her friend Julie who cured her breast cancer tumor three years ago.  No Chemo, no surgery, no radiation…she smokes a joint a day, drinks 5 cups of green tea and changed her diet.  “Cured” she said, wondering if I should change to her doctor.

The love and kindness of people has me in awe and holds me up. Armando comes weekly to let the dogs out on Chemo day and wraps me in big bear hugs every time he sees me.  Juliana is a cleaning tornado and makes the house feel exactly as OCD as I like it.  Cherris brings her giant heart and the “Traveling Pink Basket” filled with the most wonderful uplifting goodies, it’s kind of like Christmas. Chris and Lindy bought me some adorable hats and a soft pretty scarf to cute me up, it worked! Tara has been sending weekly beautiful cards to counteract the bills in the mailbox; she brought me a delicious dinner one night and spent two great sister filled nights. Bob makes me great food, brings me flowers and took me out to another delightful dinner.  Donna (Who is a school teacher) sent a package with cards made by her students. They were on pretty paper with get well wishes and a joke in each one, it was a joyful heartwarming package.  Betty sent an adorable bunny basket filled with skin moistening products.  Coralee and Anna brightened my mailbox.  Chris, Karen, Terry and Lindy are keeping the word “We” is my cancer battle. These ladies are amazing and put joy in this journey.

Charlie the bad dog, ate all of the candy for Miranda’s Easter basket before I could fill her basket, chewed up her tube of Burt’s Bee’s lip stuff and killed the cute yellow cheeping chick too. Not sure if was his diarrhea or mine that prompted this dream…

     It’s my birthday tomorrow, my Mom didn’t make me a cake, I need a cake, going to make my own. Go to Safeway, trying to find ingredients, the lights go out, I am frustrated, Oh no gotta use the restroom! Now!  Hurry where is it? I find it, my friend Chris is there, she has diarrhea too. There is only one stall and it is taken, there are at least ten other people waiting, men and women and they have diarrhea too. Frustrated I think I can drive the forty five minutes home and make it.  My car is the room I jump in it only to find the steering wheel missing.  Lets just end this dream here, I did not make it home.

Love and Hugs, S

ps   You know you have cancer when…you can’t wait for the seson premiere of “The Big C” (Showtime tonight)

March 28, 2012

There’s a bald lady in my mirror

Filed under: Uncategorized — by The Blue Folder @ 2:51 am
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Where the heck have I been? What day is it? What year is it? Questions I seriously ask myself?  Since Sherman left I went into slow motion, not going out, not calling, not writing just in this inward (tired) place. Trying hard to find peace with it but find that I don’t have the energy to fight it either.  Not to worry I am not down and out and need help, actually feeling so much better that the virus and the sinus infection have passed, just trying to to do what my body says/feels.  I do go for a walk with the dogs almost every day, I do clean, cook and spend alot of time on my health. Boy this cancer is a part time job for sure.  Last Thursday on Chemo day which I went to with Chris and Karen (Two of my Ya Ya gals) the doctor told me my tumor had shrunk from 5x6cm to 3x3cm, praise God and UCSF for that!  My goal is to stay as strong as I can so that I do not have a low blood cell count and get a delay in treatment. I do this by taking my supplements, eating right, drinking lots of water, moving to keep my circulation going and rest when needed. So far so good.

Still can’t get used to seeing a bald lady in the mirror, nor the fact that the shampoo slides right off and I don’t have to comb my hair, or dry my hair. I also really notice everyone elses hair like never before, hair really is pretty and different on each person.

I love to cook my chicken with dried Tarragon. I ran out and since I eat a lot of chicken (high in protein) I made it a priority to get some more, I went to three stores before I finally found some, brought it home went to put in in the empty Tarragon mason jar only to find it full. Full! What the the hell? I still can’t figure out when or where! Chemo brain for sure. I find myself doing a lot of preplanning/list making etc. to try and compensate. I figure it’s good practice for my later years in life.

Went for my first public outing, a memorial for a wonderful 105 year old women, so glad my sister was here to get ready with me and that she drove, really did not feel like it and most likely would have stayed home.  Cried a few tears for some reason, got myself all the way dressed except for the head, debated/settled on a hat over the wig and off we went.  Didn’t feel like my outward exuberant self but was glad I went.

 

Good things about cancer~

learning to be frugal

drinking less wine (Only because I don’t feel like it, but it does saves money LOL)

more hugs, more hugs

laying around with the dogs

weight loss

introspection

more chatting with family

friends love

 

New side effects~

Light sensitivity

diminished eye sight

Taste changes

Rash on head

 

Love Love Love, S

 

March 17, 2012

Not a good time to commit a crime

Boy what a week, three trips to UCSF for progress tests and Chemo in addition to Sherman being  home on spring break.  He is doing great and it’s nice to have  home. This was our first visit since all the cancer stuff went down. He sure wanted to be here for me , kept assuring him I am good hands is so many unbelievable ways and to get on with his new life. He went to two of the appointments with me. Twas very nice.

Feeling a mix of assorted symptoms , some constant, some come and go but nothing more than slowing me down and causing me to put much more thought into everything I do, if I can remember to do it.  Chemo brain is quite present and I am finding my way as to how not to be so affected by it. I keep a note pad close by and hope I remember what to write down.  It’s actually quite disturbing. A few examples of fuzzy brain:

I was dishing up dinner plates and put the salad dressing on the plates before the salad

I get a thought I rush to grab the note pad and before I can get out the note pad the thought is gone

I was putting away dishes and had my frying pan in hand and I just stood there stareing at it for the longest time  trying so hard to remember where it goes in my kitchen

Sent Miranda to a doctors appointment which I logged into my calender on the wrong day

Went to Safeway to pick up a prescription, got home and thought “Shoot I forgot to pick up my prescription” but then remembered I did. The next day waiting in the doctors office ‘Shoot I forgot to pick up my prescription”  but then remembered I did.

My typing skills are severely diminished

There are many more but I can’t remember what they are.

Shaved my head, couldn’t take shedding more than my dogs that I have to vacuum up after daily. It was so yucky having hair everywhere and I mean everywhere. Not a good time to commit a crime as your hair samples would surely be left behind. I went to a salon owned by a dear sweet lady, filled with such caring and loving women who took extra good care of me.  When I checked in at the front desk there were three ladies behind the counter, I told them my name and they gave the “You’ve got cancer look on their faces” but quickly swaddled me in love and laughter. They shaved, washed conditioned and massaged my head. Sent me off with promises to pray for me.

I have one friend who volunteered to shave her head is solidarity and one who volunteered to shave hers legs, such good friends. Just too much to ask though.

Today I planned an impromptu “check out my bald head” get together at a friends, made an awesome baked goat cheese appetizer, we sipped wine and tried on my wig, hats and scarves and had fun, so nice to have sisters and girlfriends. Two hours of  fun was more than enough fun for me, came home took a hot bath and went to bed.Think I’m getting a virus.

Eeeeee gads, I’m bald! Not nearly as bad as I thought. I bought a very cute wig, I have hats, I have scarves, but for now bald feels best.

So many loving hearts with me and for this I am sooo grateful.  What would I do without all of you. See that smile on my face in that bald photo, It’s because I am loved and cared for by you.   XO S

March 12, 2012

Here a hair, there a hair, everywhere a hair…

Filed under: Uncategorized — by The Blue Folder @ 6:04 pm
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Ol Simoney is going bald…

The process I had hoped I would somehow would avoid has begun.  It started with a very sensitive, itchy scalp and a hair here, a hair there, everywhere a hair.  Head is itchy but too sensitive to touch, hurts to lay on the pillow, mostly at the crown.  Planning my shave the head day (Wednesday I think) to avoid the mass exodus of hair that happens.  First I will get a Mohawk and take a picture for my goofy family to laugh at and put in the family video and then off with the rest of it.  It’s nine months ish of no hair, seems longer than 5 months of chemo, how vain is that? Started wearing hats yesterday to practice.

 LOL  How cute is this, This would be comforting to little girls with cancer.
Side effects~ Foggy brained,  headache, loose stool, scalp hurts, throat hurts, sinuses hurt,  ears hurt, back hurts, fingers hurt,  port hurts , nauseous, burpy, my vagina and rectum burn (I think that was the chemo drug exiting my body) Hot and chilled. Not dead though 🙂
To all of you who send your love so freely with calls, texts, posts, cards, emails, checks, pink baskets filled with pink goodies, risotto, taking me to my appts, hounding me to take care, etc …Thank you, Thank you!  It means so very much!

March 7, 2012

Ok I admit it, I slept with another dog

Filed under: Uncategorized — by The Blue Folder @ 5:43 pm
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Another gloriously heavenly day here is California, sometimes I feel like God planned this years very beautiful winter/early spring weather just to lift me up. It would be the pits if were cold and rainy. It helps to get me out for the mandatory daily walks needed for good circulation as well as helps the dogs blow off steam adjusting to the being at home and quite more schedule. (Miranda has also been a trooper helping get them out as well)  Charlie is still a bad dog and a great dog. Both dogs sense something is amiss and try to lay close to me in bed with their head on my me as if they need too. Kinda nice, kinda crowded.  Both dogs greeted me with utter jubilation the other morning when I arrived home from spending the night at a friends who’s husband was out of town.  We had a girl’s night (bible study lesson, dinner and watched “The Bachelor” with is so stupid and useless I love it!)  I love her 13 year old dog Buddy who used to sleep on my bed when he was young, well  now he is an old man and looks up at the bed begging for us to sleep together again. So I got the idea to move a chair and two tables then I put the mattress on the floor which drives my friend and her hubby nuts because the guest room is utterly gorgeous but I can’t help myself. I can see them rolling their eyes and saying what are we going to do wth her. In the morning I put the furniture back, damn that mattress is extra heavy now that I am weake,r and the room is back it’s beautiful self.  And Buddy and I are happy.

You know you have cancer when…

~You meet friends of your friends and the look at your breasts and say”Oooooooooooooooooooh your Simone”

~You start looking for other women with Breast cancer blog sites and feel like you can relate and it brings you joy

~Day after day people call to check on you  (which you appreciate)

~Cancer spam starts showing up

~People call to you how you should try this or that to cure cancer

~You meet a women with cancer and in an instant you are soul mates, and she tells you everything you are going through that you yourself could not put into words.

People I am beginning to think I have cancer, still feels like I am on another planet.

I did not tell Charlie I slept with another dog.

 

 

February 26, 2012

The Blue folder (Avoid it if you can)

Filed under: Uncategorized — by The Blue Folder @ 4:45 am
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“You will be given a blue folder by the nurse”  ”Be sure to pick up your blue folder on your way out” “Did they give you a blue folder” I knew I was in trouble when I did not see anyone else leaving the women’s health center with a blue folder. Thus began the wild ride to Breast cancer land.  I felt like I was being sucked into a vortex where all that mattered was healing this alien that had moved into my body, every other other care I had had dissolved into the panicked dreamy state.  Though God, family, friends, neighbors, and pets I have managed to remain calm, have some laughs and educate myself on this journey I am embarking on.  Chemo, surgery, radiation, one year they say.

First Chemo session is over, thank goodness.  It’s stuck me that I didn’t know what I needed until it was presented to me. Two loving friends got up early and drive me into the city for treatment. The two of them were so calm, loving and cute they put me at ease. It was a long day when you threw in the surprise minor surgery to install the port and the various delays of the Chemo. I was exchausted to say the least. Thank goodness they were there.  Came home to a dear neighbor standing curbside with a bouquet of flowers and a wonderful hug.  As I presided towards my home another friend had lit the walkway with votive candles, flowers floating in water, the entire inside of the house looked like a scene from The Bachelor with flowers and candles in every room. I received calls, texts, posts and prayers. A day I could have managed alone instead became a beautiful spot on my heart.

Side effects were minimal, I followed my to-do list to the “T”.  Felt a little odd and really wanted to poop, went to bed very early. Today I just feel slow and kinda groggy but not bad.

Thank you all so much for lifting me up, S

February 25, 2012

Past emails for those who missed them

Filed under: Uncategorized — by The Blue Folder @ 5:52 pm
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1/26/12      Work up bright and early after a horrible nights sleep. I refrained from getting on the Internet last night and searching until I made myself crazy. Thought it might be better for my sleep…wrong…still my nights sleep was like a bad drug trip. Asleep, awake, asleep, always awakening to the same nightmare.
Woke up with a positive attitude, made Miranda breakfast and then searched the Internet. Discovered that a lot of the symptoms that I had attributed to pre-menopause just might not be. Dr. Weinstein also pointed this out to me before he knew anything was wrong. Symptoms like dizziness,lack of concentration/focus, lack of energy,nausea, joint pain etc. But didn’t go crazy with the searching today. I need a prognosis then I can go nuts. Gotta be honest, I’m concerned it’s bad 😦
Got all the necessary info/paperwork over to UCSF by 2:30, took the dogs for a walk hoping for a call to come in, no call. Miranda came home from school and had a bad day so we went to a see “I Bought A Zoo”. The movie was very different from the book in that the book focused on the trials and tribulations of caring for the animals, the major cash flow problems and the problems with the facility itself…it did not focus and a dead Mom like the movie did, Yikes.
1/28/12     Laid down in bed last night and decided I’m not doing the bad drug trip thing again, got up went to Safeway and bought Rocky Road Ice cream (Gotta fatten up for the major weight lose coming my way) and Safeway sleep aid, slept oh so well. I’ll be doing that again tonight. Woke up hoping to hear something, anything, from UCSF. Put in a call, checked my email, nothing! The psychosis set it in, one minute no problem, the next I’m a dead man. The brain in a funny thing. A little Burdy (my friend) must not have been happy about this because the phone rang and I had an appt with the Breast cancer God and tests on Wednesday @ 10:00. I jumped in my car and rushed the test results I have to UCSF with glee, take them, heal me please. Twas a beautiful day for a drive and a great distraction. Then called the fam with the bad news.(Boy it takes along time to call this big group) They put a smile on my face!

Took the dogs for a walk, made a fab meal for Miranda and I. Now have candles burning, a fire going, a nice glass of wine, and Bob Dylan playing the background. What a journey, gonna hang tough, not going down without a fight, feeling grateful, so over whelmed to be so loved.
1/30/12

Is it Wednesday yet?
My days are filled with hope and strength and gratitude. How can I be so blessed to have so many wonderful people in my life? Trying to keep busy, the days feel like years, am I mellow dramatic? I sure hope not! I know not how else to feel, keep time moving, keep it moving. Worked at my desk, planted flowers,cleaned out the refridgerator, cleaned out the bath tub, took the dogs to the dog park, gave the dogs a bath, cleaned the bath tub again, washed everything in the house I could wash, cleaned the tea kettle, cleaned the crock pot, did you know that if you flip your crock pot up side down the underside in really dirty including under the handles. Is it Wednesday Yet?
The nights feel like a freight train running through my head,
the engine has a big “C” on it
each car that passes by is a new thought and before I can dissect it another car comes by,
has it spread,
when are they going to take it out,
do I have enough dog food and toilet paper in case they keep me,
can a broken heart give you cancer (tears down the cheeks),
have I had too many chest x rays,
how will I tell the kids,
how sick will I be,
maybe it’s nothing,
would I wear a wig, would it be blue,
should I move,
can I live in my car,
what would I do with my pets,
could I be without them,
maybe Miranda should go back to Idaho,
will Sherman need to come home and take a job,
wonder how awful it looks to have your breasts removed,
Am I going to run out of laundry detergent,
should I plan my funeral just in case,
I’ve never seen Paris,
why am I alone at night,
it has spread to my eye lashes, I’m just sure of it.
Finally a caboose telling me to be calm, all will be ok.
But the train is on a loop track, oh no here comes the engine again.
Night all, I will be strong no matter what cards dealt.
2/5/12

 Another bad dream, (tired of those) started the day overwhelmed and feeling blue, went back to bed! Later took a cancer book to the happiest place on earth, the dog park! Stayed for an hour and a half while reading and smiling at the dogs. At one point Sade climbed up onto the concrete picnic table I was sitting at, people laughed, I pushed her off, she got back on, people laughed,Charlie then got on, people laughed, then he started to hump her right on the table, boy did the people laugh then! Never a dull moment with Charlie around.
The books I bought are really helpful, taking away some of the unknown really helps. Pet CT scan tomorrow and a bunch of tests on Tuesday, should have all the info needed to determine treatment plan. Yikes! ready or not here it comes.
2/12/12     

Busy getting things ready for my new regiment which starts 2/23. It’s quite bizarre what is and is not important to me at this time. I feel kind of out of my body yet so clear and focused. I am going into this with a positive attitude thinking it’s not going to kick my butt and will make adjustments from there. I plan to go to the first treatment with Chris & Lindy, then plan to go home and eat the meal I will set up in my crock pot and then sit back and see how it going to goes. Please don’t try and talk me out of this, I really don’t want people watching and waiting for me to barf and if I do, I know how to clean it up if necessary.If I need help there are many loving people a phone call away.
I have Appts T,W & TH next week. The brain MRI is on Wednesday which my brother Gary, and sister Virginia, are going to with me. Before the test we are going to eat at San Woh’s in Chinatown, I’m drooling already! My Sister is going to all of the other appts that week as well.
FYI You can have nightmares on Ambian. Last night I dreamt that Charlie had been hit by a car. I was not there when he was hit and the people who were did not get him to me until two weeks after the accident, they presented me with this emaciated wounded almost dead dog. I put in under my shirt next to my stomach and chest like I did to comfort my babies when they were little and took him to the vet. They told it was going to be a battle but he was going to live. Later on that morning I realized that I was dreaming about myself. I also dreamt about little kids, iguanas and Macaws but I am not seeming any parallels there, LOL.
2/16/12

Busy getting things ready for my new regiment which starts 2/23. It’s quite bizarre what is and is not important to me at this time. I feel kind of out of my body yet so clear and focused. I am going into this with a positive attitude thinking it’s not going to kick my butt and will make adjustments from there. I plan to go to the first treatment with Chris & Lindy, then plan to go home and eat the meal I will set up in my crock pot and then sit back and see how it going to goes. Please don’t try and talk me out of this, I really don’t want people watching and waiting for me to barf and if I do, I know how to clean it up if necessary.If I need help there are many loving people a phone call away.
I have Appts T,W & TH next week. The brain MRI is on Wednesday which my brother Gary, and sister Virginia, are going to with me. Before the test we are going to eat at San Woh’s in Chinatown, I’m drooling already! My Sister is going to all of the other appts that week as well.
FYI You can have nightmares on Ambian. Last night I dreamt that Charlie had been hit by a car. I was not there when he was hit and the people who were did not get him to me until two weeks after the accident, they presented me with this emaciated wounded almost dead dog. I put in under my shirt next to my stomach and chest like I did to comfort my babies when they were little and took him to the vet. They told it was going to be a battle but he was going to live. Later on that morning I realized that I was dreaming about myself. I also dreamt about little kids, iguanas and Macaws but I am not seeming any parallels there, LOL.
2/18/12
     Ok the initial tests are over! Yippee! Felt like I was in a tunnel clinging to the light at the end. The light at the end says 12 weeks of weekly chemo, gonna loose my hair in 14-16 days, mouth sores, very sensitive skin, neuropathy, nausea and fatigue, to what degree we shall see. Second round 8 weeks of biweekly treatment, this round sounds the worst. Intense bone pain, and depleted immune system to where I should almost not go out and I cannot touch soil. Me Simone Ewing cannot touch soil, seriously!
Chemotherapy starts on Thursday. I pray I am strong, I pray I can work and I pray my children will not endure too much along with me.
     I have my Simone Ewing cancer research center set up. I am making a daily check list of all that I need to do each day down to the last detail. My goal is to stay as strong as possible, and of course I am afraid. But knowledge is power and I am in good hands, no, i am in great hands at UCSF and Gods hands.
On a journey to who knows where, S

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