Diamonds on the soles of her shoes

from "http://www.positivityblog.com"

One of my worst fears as a mother is that I will pass on my genetic anomalies to my child. I know that we all have health history to deal with, on my husband's side there is Parkinson's, among other things. On my side, me with both a chronic autoimmune disorder and cancer.  A grandfather with heart disease, a grandmother and two great-grandmothers with cancer. Another grandmother with Dementia/Alzheimer's.

Now my father has been diagnosed with early signs of Alzheimer's. He will be 77 in May, and hopefully with medication, we can push the onset back a bit.  His side is very long-lived...most of his aunts, uncles, mother and grandmother lived well into their 90's, most without losing their faculties.  My great-grandmother and grandmother were not in that group.  I remember visiting my great-grandmother in the nursing home on one of our summer visits to California- the one who taught her 5 year old great-granddaughter how to say "kiss my ass" in Portuguese  and smoked in bed with her granddaughter in the 50's.  I remembered a large-bosom-ed woman with all encompassing hugs.  Instead,  I saw a frail, skinny old woman, hair disheveled who did not remember me anymore.

My sister and I spent many summers in California staying with my grandmother, spending time with the aunts, great-aunts, and cousins on both sides of the family.  We played gin rummy and spoons, and laughed at my grandmother when she had the occasional "fluffy" moment...a joke on her fuzzy thoughts as well as her permed curly white hair.  This is how I remember her, because after the dementia became really bad, I did not go and visit her.  I did not want to remember her THAT way, and after all, she didn't remember me.  The end for her was only painful for those she left behind, she had long been lost to the world of the living.

I am hopeful for my father, that medication will help slow down the progression and he will be able to live the remainder of his life with more awareness and less confusion.  Since he lives near me, I will not be able to live in denial of the disease on this go-round.

Additionally, two weeks ago, I took Connor to the Pediatric Rheumatologist.  He was diagnosed with hyper mobility syndrome - something he picked up from me, and undifferentiated spondylopathy - or something close to that...an auto-immune disorder.  Again, something he picked up from me, since auto-immune disorders are genetically transmitted.  In the juvenile stage, this has manifested in his toes swelling, and inflammation in the back of his ankles, front of his knees and stiffness in his spine.  Right now we are treating it with prescription Naprosyn, and hoping for the best.

My husband will say I am wasting the present on a future that has not yet happened, but it's hard not to when I see 3 generations of illness and wonder how each will be impacted. I know that if my son's illness progresses into full blown chronic adult Ankylosing Spondylitis, it will be treatable with the same meds that I use to control mine, and he will have something I didn't have; someone who knows what it's like to deal with a chronic disease and move through it to take control of your body back from the beast- to prove that you are in charge and not the disease.  I can hopefully help him to do this earlier and avoid the deep depression and hopelessness that I endured until I figured out a way to get through it.

Bellydance Grand Rapids - Oriental Choreography Class

In the meantime, I am immersing myself in conditioning my body - Zumba for some rhythm and cardio, and bellydance for the sheer joy it gives me.  I found I can use the common room at the local Y to practice after the scheduled classes are done.  It has a full length mirror and all the room I need to move.  Plus, I've had a few people approach me to ask where I take classes.  Bellydance is still a little strange in West Michigan, it seems.  I'm working on my dance costumes, and hope to perform in the student performances in June at our studio's 3 day 'show-off' weekend, "Tales from the Sultan's Tent".  I have been asked by a few members if I will consider teaching a beginner class there. I'm not sure if I qualify to do that, but will ask the AD there if it's possible.

Next week, we take the whole family + one friend to Orlando for a week.  I plan to do as little as possible, just enjoy my life, the sun, the water and spending time with my family.  After all, this is all we can do.  Live life in the present moment and realize that what the future holds, we will find a way to cope with it.

~namaste

I make my OWN Valentimes day!

 Happy Heart Day!

Today is my ONE year anniversary of my last (real) Chemo treatment!  I can't believe it's been a year since I was bald, skinny and sick.

a year ago

I baked a giant triple chunk heart brownie for my sweetlings, It looks pretty but the bottom is overbaked because I used a double batch.  I wanted a BIG heart brownie.  The middle is pretty good, especially for breakfast.

Now...(yes, I look like this ALL
the time!)

My wonderful hubs got me this beauty box of FANCY choc-o-lattes (french accent there pls!) which I ate about 1/2 of last night.  Zumba tonight I think is a necessity.  I have Lowell Wellness Board of Directors meeting tonight, but I missed the last two weeks because of crappy winter weather..

Update on Shanti:  She is GROWING! (I know QUELLE SUPRISE!) [mandatory to throw in as many french phrases as possible on Valentine's day]  She also still hasn't figured out NOT to poop in the house!  My husband, the enforcer started letting her sleep in our bed about a week ago, because she woke him up too often in the middle of the night and he was getting tired of sleeping on the couch with her.  This is fine with me, she is like my own little heating pad, but is interesting when another skinny little body is ALSO in the middle of the bed.  Hubs looked at me the other day and said..."this is going to be bad when she is bigger isn't it?"  He is totally wrapped around her little pink toe (the one with the white fur on it).  She has this sad soulful face that defies you to NOT give her what she wants.  Max has adjusted well, and has a constant wiggly, black growth chewing on him pretty much all the time she is out of her crate.  He doesn't seem to mind, but I notice he does a lot more laying around and teeth gnashing than playing, as he did in the beginning.  Is it possible to tire out a Border Collie?  I think Shanti has managed it.

Work is, well, work. But I'm getting used to it, and after joining my carpool, not having to drive everyday, makes it a lot nicer!  Here is the view out the window of my office on the 7th floor. And another of my office the first week I was there.  Most of the computers being stored in there are gone, so I have enough room to actually put another office in it!  After the last place, I'm not used to such luxurious digs!  But they are gutting the building soon (built during the asbestos era) and we are supposed to be moving somewhere else.  No news on that yet.

I have been playing this winter low key, trying to get used to my new work schedule, and the lack of daylight and sun.  Of course, I am still managing to get some exercise in. For example, this photo of me practicing yoga at the slopes was snapped recently (they photo-shopped someone else's head onto my body).

And here I am demonstrating to this person how to do this pose correctly (I'm not in the shot).

Haha....actually, Yoga is the one thing that has fallen into disrepair.  Monday pm yoga at the Y is out, now, I get home too late.  But I have been trying to hit the Thursday Zumba class, Sunday is Bellydancing YEY! and I'm signed up for a 3 hour tribal bellydance workshop this Saturday!  I'm excited AND terrified, as I fear I will not be able to move for about a week after.  I guess the only solution will be for me to go to Sunday bellydance and try to work the kinks out.  I'm gradually working on adding tassels to anything that doesn't move.  Just trying to put together a few full dance outfits, and going more towards tribal style.  Shanti SOMEHOW managed to remove a tassel from my dance belt from INSIDE my dance bag on TOP of a bed in a closed bedroom and then reduce it to a large pile of yarn pieces.  She also got a hold of some balls of yarn from the music room and turned them into a big pile of mess.  She lacks the finesse of Oscar as a kitten, though, as he used the balls of yarn artistically, while Shanti is more about just turning it into a big pile of mess.  She's just so cute though............ (that's how it all started with Oscar)...
but for today...wishing you Love!   ~om~

Connor's Tenth Birthday

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Om Shanti

Biggest news right now....we have a new PUPPY!

ok, now that everyone has a chance to say either; 1. congrats! 2. are you crazy?? 3. you got ANOTHER dog- are you absolutely completely crazy???

Yes, we must be crazy, but bottom line is, everyone loves a puppy and she is god-awful adorable.  She is a lab/terrier mix we named "Shanti" - "PEACE" in Hindi/Sanskrit.  She will be 4 months old on Feb 7, and so far she is living up to her name at least in temperament.  (NOT as in peacefully sleeping at 4am, but that is expected when you get a new baby/puppy).   She is fairly small, in my opinion, for her age, so I'm hoping that we don't get a 90 pound lab when all is said and done.  Max is starting to appreciate having a playmate that doesn't hiss and run away when he starts chewy on his head, and they have been playing chase, keep away, and a couple of WWE moves I don't know the names of.

Max enjoying his pool

Big things happened right at the end of the year, Brian started a new job, and left the home office, which is one reason why we started considering getting a canine companion for Mr. Pickles (aka Max the mookie).  I thought we should go for a more mature dog, around Max's age, but unfortunately, Brian found the petfinder puppy page and there was a perfect storm where they just happened to be showing at a local pet store in an area we were going to be.  Within 2 minutes, maybe, Shanti was sitting in my lap, and Brian says..."I guess we're taking THIS one."  Luckily, I had already filled out an app for this event on the chance there would be a dog we liked there, and of course, though I had looked at, and applied for several other dogs, once you have a puppy in your lap, it's yours....in my opinion, an uncontested law of the universe.   She is surprisingly mellow for a puppy, she sits very prettily, and is learning down and shake quite well.  She has good social skills- we met the airedale next door and the toy pomeranian down the street.  She was interested in meeting with the cats, who tripled their size or hid when they saw her first, and she really wanted to play with the bunnies (just about her size), but couldn't figure out why they wouldn't come out of their kennel and play?

Favorite pose at the mo'

FIRST dog I have ever owned that plays fetch, tug, chews on squeaky toys and doesn't demolish plush ones. I'm pretty excited to see what she does with a frisbee when the weather warms up.  She is also not that mouthy, despite a bevy of needle little puppy teeth, so my hands, feet, etc are very happy about that.  I think I will skip puppy school and just wait a few months for basic obedience.  I think she will know most of the commands in 2 months anyway.   She also likes to 'walk herself'.  It's quite funny, never having a dog that we didn't have to constrain in some way in order not to get dragged down the sidewalk.

Ok. Enough about Shanti.  But, you know, it's really quite nice to write about new life, energy, love, and all that stuff in a cancer blog, especially when dealing with the deaths of 2 more members of our local Gilda's club within the past month.

So here is the REVELATION part of today's blog: I FINALLY realized what I wanted to do when I grow up.  Teach Yoga.  I've known it for a long time, but with my RA, I never really thought that I would be able to stand up to the rigors I imagined a Yoga teacher must have to go through to be a Yoga teacher.   But, I realized AFTER I went through my cancer journey that I was able to do yoga all through out my surgeries and treatment, at times, the only thing that seemed to keep me sane.  If *I* can do yoga during cancer, I certainly can become a teacher and help others that are going through the same or similar ordeals.  Studies have shown the women who do yoga during breast cancer treatment get through it with better mental outlook and fewer reported side effects.  Personally, I think that they have the same amount of side effects, but use Yoga to manage them, thus taking control of their own experiences.

I learned that during childbirth.  When I was on the monitor and knew the contraction was coming, I could start breathing and relaxing BEFORE I felt the actual pain, and was able to get through it.  When I was off the monitor and the pain hit me first, it was a lot harder to deal with.  Cancer, RA, diabetes, MS, MD, heart-attack, stroke- whatever- these things take away the misconception that WE can control what happens to our bodies.  I ate organic food, exercised, etc. etc. and still I have these diseases.  I can view myself as a victim of these diseases or I can use my yoga practice to take control back from the disease and manage it.  That means I win, despite whatever happens to me.   Just about the time I decided I REALLY wanted to take the teacher training certification offered through Hillaire Lockwood's Hilltop Yoga studio (BTW -Hillaire is a chronic cancer survivor and KICKS ASS!),  I was approached by a recruiter for a staffing firm in Lansing.  Looking for a Business Analyst to do some testing for the State of MI.   About 10 minutes from Hillaire's Old Town studio.  The home office for my new company, Analysts Int'l is in Okemos, which is close to her Haslett studio.  hmmmmmm......can we say Serendipity?

I knew that when the right job came up, I would know it, and guess what, I did!  So, though I'm just finishing my first month on the contract, things seem to be going pretty well.

Brian took me to a pottery wheel workshop courtesy of Groupon and I made a bowl!  Wasn't really sure what it was going to be, but here it is.  I think it turned out pretty nice.  I think it will end up being a cookie bowl for the pooches....


Even though my favorite bellydance instructor Na'imah (below, far left front) LEFT US to fend for ourselves in the month of December while she went galavanting around India, she did post this lovely pic of one of our classes working on our choreography piece to Ma Tes’al Aaleya, and it actually looks like we all know what we are doing~!  

at BellyDanc Grand Rapids (I'm in the back corner)

I'm having a blast with bellydancing, it's so fun to do on a Sunday afternoon, it really helps with that Sunday evening dread of heading back to work the next day.  Additionally, I started Zumba-ing on Thursdays at my local Y...something I don't think I would have the nerve to do before all this.  THAT is hard work, but I'm starting to get good at some of the routines and having a lot of fun, which is the most important part.   I've kind of put running on the back burner, too many irons in the fire right now, but I think once Connor starts up spring soccer, I'll get back to running, since there is a good track around the field where he practices.

SO.....that is a LOT for one post, but I figure what I'm lacking in frequency these days, I'll make up in content.

Brian got a new gaming PC for xmas, and tricked out the old one with all new gaming parts, so I can have the laptop, since I lost mine when I left Farmers.  I felt a little naked without it on the weekends, even if I never opened it up.  Sort of like when you lose your phone, even if it's just misplaced, you get that panicky feeling of being disconnected.  oh what technology has done to us!!!  In any event, the thought was to get two gaming computers so I can use the laptop, which works out sort of ok, until my son wants to play some game that's only on the laptop.  Luckily, we are now in stasis- one computer for each member of the family with opposable thumbs.

But for now we've come to the end of the January installment of BCIMB.  Hopefully February will continue to bring good things into our lives. Until then-

OM shanti OM
~love, pixie

Isn't it ironic.....?

Turns out...Borg port photo out looks pretty much the same as Borg port in....at least while all the steri-strips are still in place.   I promise I will get a NICE photo of my collarbone sans bulbous goiter, but it may take awhile...those steri-strips stay on forever!

WARRIOR bracelet, peekaboo lotus breast

The surgery went awesome, about 20 minutes, and they didn't put me all the way out, just some nice relaxing whatever (couple glasses of wine would have worked out the same) and some local injections of Lido.  The surgeon was Indian and we discussed our favorite indian dishes....mine being a toss up between Madhur Jaffrey's Lamb Saag and Fresh coriander chicken with lemon.  At 8:30 in the am, a strange conversation, but I hadn't eaten yet, and I'm not sure how long the surgeon had been on duty.  The nurse said she could have put me out totally, but said they were all very entertained by our conversations.  I guess I should feel flattered that she didn't feel the need to shut me up....   :)

I'm a little more sore than I expected, and it feels so strange to be able to move my head in any direction and not feel that now familiar tug of the catheter.

I know people have had huge celebrations, meltdowns, etc. once the chemo is done, but I actually prefer this quiet sort of celebration that this phase of my treatment is over.  I will still have to see my oncologist in 3 months (and probably like that for awhile).


I was tempted to go back and read some of my posts from last year, when I was in the thick of things, but resisted the urge.


So much has happened since then.  The lack of posts here attest to that.  I have a feeling that this blog will start turning into a recap of what's happened vs the play by play it used to be.  Time to blog is not what it used to be.  Here are a few cool things that have gone on that I don't think would have happened had I not gone through this experience:

• I got appointed to the Lowell Community Wellness Board of Directors.  The wonderful woman who was involved with Pink Arrow Pride project had to step down after 6 years, and I'm hoping to be able to step into that project among others.  This is going to be an adventure that will take me down paths I could never imagine.  I'm looking forward it

• I got a few extra tattoos besides "the Lotus Breast".  Because of Tracey's awesome Relay for Life speech--the youtube video is posted a few blogs back-- I got my inspiration for my survivor bracelet, which turned out awesome, then went whole hog and got my 1/4 sleeve Hanuman.  Brian started on his 1/2 sleeve at the time that I went in to get my bracelet, and after a little bit of thought we decided, after what I've been through why the hell shouldn't I get it???   I wear sweaters through most of the summer anyways, when I'm indoors.  For those of you NOT familiar with the million or so Hindu dieties, Hanuman is the Hindu Monkey god.  And for those of you who know me in person, have heard my hubs call me "Monkey" a few times.  Besides that, Hanuman represents strength, he is the slayer of demons, but the embodiment of  love.  His story is told in the Ramayama, and summed up in MC Yogi's song "Rock on Hanuman".  I LOVE the way he turned out, and of course, both the hubs and I are thinking of what else we can put on our bodies....but have decided to save a little money for the holidays and stuff.

• I decided I want to become a certified yoga instructor.  I had planned on taking an intensive course at Hilltop Yoga in Lansing-where Brian took his, however, the funds were just not there, so I've postponed it until next year.  POSTPONED being the operative word.  Since my journey began, I've learned to trust my intuition a bit more. When things feel right-go with it, when they don't--back off and examine what's happening there.  More on what I want to do once I become a yoga instructor later....

• Lastly, I went all 007 and did an undercover photoshoot as a present to my hubs for our 14th anniversary.  The results are posted here and in my previous post.  I went for 20s/30s silver screen glam combined with some of my hobbies and interest- bollywood, bellydancing. And of course, the opportunity to showcase the beautiful art on my body.  I know I never would have had the confidence to even THINK of doing something like this, and the shoot was fantastically fun, and the results, amazing.  

In a way, I'm sad that I've not had the time to spend on my blog since I went back to work in July, but I suppose that is to be expected--life gets in the way.  On the other hand----LIFE---- that is what I was fighting for this whole time.

~namaste~

Goodbye to you.....

My new Hanuman Tattoo!

Monday am was my last 'regular' oncologist appt.  I go from every 3 weeks to 3 months for now!

Tomorrow am I'm getting my port out.  I'm so excited, I thought this day would never come.  I'm DONE with IV chemo.

41/2 more years on Tamoxifen, but that has not been the nightmare that I've heard others tell about.

I'm feeling pretty good, trying to fit in a run here and there, and bellydancing on the weekend.  I'm hooked on Bollywood music to get me moving in the morning.

Borg Port in

My only lasting side effects are mild neuropathy in my fingers and toes, for which I take Neurontin for, and a new stiffness in my joints that started when I started the Herceptin.  I've tried to remove all other variables- running, tamoxifen, upping my frequency of Enbrel, and I still have achey feet, ankles and hips if I sit or lay down for too long.  I'm hoping maybe it will end up being the Herceptin, so I'm going to be looking to see if my symptoms improve.

Tomorrow...I'll have a photo of BORG PORT OUT!

Ok...really?

Just got back from the doctor and on top of the bladder infection I'm treating right now, I just found out I have shingles! Ugh. Off to the pharmacy for yet ANOTHER prescription.

On the positive front- only 2 more IV Herceptin treatments. Then I can be un-Borged, just not sure when.


Cudos to my neighbor who nailed the shingles diagnosis while we were working on our bra design for "Bras Across the Grand" on October 20th at ah-Nan-Awen park.