Wednesday, October 31, 2012

Jar Head

Jar Head
Do you remember those wonderful little glass baby food jars?
I am older and have little reason to peruse the baby food isle but the last
time I did go there what I saw was a lot of plastic square boxed. Now just
what can you make out of that. Certainly they do not compare to the glass jars.
Oil on 6x6 gallery wrapped canvas
Available in my DPW gallery. Follow the link to purchase per PayPal

Tuesday, October 30, 2012

Christmas Gathering

Christmas Gathering
There is no time on earth like Christmas...  The visits by family
and friends, The warm cozy feeling of a fire in the fireplace. The comfort of home. The smell of fresh baked cookies and the laughter of children. All these things are what is so special about
a Christmas Gathering.
For sale or auction at my DPW gallery. Just follow the link to purchase via Paypal.

Revlimid 3-Week Update


I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.


As soon as I hit 7.5 I started to feel very unsettled and overwhelmingly tired. Once I hit 5mg last week, dizzy spells kicked in. When going from sitting or laying to standing I would have very scary spells where my vision would blur, my ears would become full and I would have to hold onto something to keep from dropping to the ground. After several of these instances over a few days I had to report it to Columbia. They did not want me going into this weekend without having me thoroughly checked out by someone who knew my situation and history.  

I got a rush appointment with my pulmonologist who confirmed that my lungs sounded clear and that it wasn’t again the radiation pneuomnitis flaring up, but upon running some tests of my heart rate and blood pressure while laying, sitting, then standing, it was confirmed that my body wasn’t self-regulating correctly. When I went from sitting to standing my blood pressure would drop and my heart rate was jumping from 100 to 130bpm working overtime to try and get blood to my head, which it didn’t have the power to do. Apparently this orthostatic hypotension is again something common in those coming off of a long dose of steroids.

As much as I don’t like some of the effects the steroids have on me, I also don’t like the idea of fainting and crashing to the ground – something I’ve been able to avoid all my life even with all of my medical treatments and days of anemia. That situation was particularly worrisome as I already have an “athlete’s” low blood pressure (90/60). My pulmonologist and Dr. O’Connor’s nurse practitioner discussed the situation and have concluded that since I’ve now had two episodes when coming off of steroids that my body has most certainly developed a dependency and it’s likely that I have adrenal fatigue or failure altogether. In other words, my glands that should be producing the hormones and cortisol levels that I need to get adrenalin and stress response have gone kaput. The steroids were replacing those levels for so long that my own natural producers stopped putting out. Again, common, but dangerous.

So, I’m back on 10mg of Prednisone. This is about the amount that the human body produces naturally so we’re filling in with synthetics to keep me going. After just one day back on the 10mg my dizzy spells have just about dissipated completely. I am much more stable again. I’ll stay at this level for a bit then we’ll drop me off on an even slower taper schedule, by 1mg at a time. At that point we’ll do blood work to test my adrenal function and see if they’ve given up completely.

Other than that little issue, my blood work numbers look fantastic. Everything is in the normal range, and the treatment is not affecting my blood counts at all. After just two weeks on the Revlimid, my sed rate, which measures the amount of inflammation in my body, dropped from 100 to 42. We can’t rely on that number exclusively, but like to think that it’s a really good sign that the Revlimid is working against the disease.

Not only am I surviving this treatment, but we survived another hurricane; we didn’t even lose power in our home. Instead, it was a night in with our neighbors and their kids playing Catch Phrase as the wind howled outside. Nothing but a few tree branches was lost here. My thoughts are with those along the shoreline and our friends in Manhattan that fared so much worse. 

The Patch

The Patch
I don't know why but I just had this urge to paint pumpkins. So here they are.
4x4 oil on canvas panel.
For sale or auction at my DPW gallery. Follow the link to pay via PayPal

Monday, October 29, 2012

Christmas Cheer

Christmas Cheer
I know I know, I am pushing it a little. I can't help it. Since Christmas is
just around the corner I couldn't help getting a little head start.
6x6 oil on gallery wrapped canvas.
Still life

Saturday, October 27, 2012

Christmas Is Coming

Christmas Is Coming
Oh My! I had so much fun painting this. The berries were such a challenge but
I love how they turned out.
6x6 oil on gallery wrapped canvas.

"Rooted in Star Dust"

Close up of chocolate pod with roots....it doesn't show in the photo, but there are swarovski rhinestones on the ends of many of the roots....the release of start dust....

"Rooted in Star Dust"

Side view showing dimension of wall piece and chocolate pod

Antique sheet music, handwritten French letters, tempered glasss....

Close up of the top of the piece.....antique handcarved wood corner pieces, wooden filigree, antique pin, tempered glass over hidden Reiki symbol

Friday, October 26, 2012

Hay Day

Hay Day
Painted for a challengs of the sky for DPW challenges.
6x6 oil landscape on gallery wrapped canvas.

Bogus


This is a piece that I wrote and shared at Syllable: The Reading Series, held monthly in Hartford at La Paloma Sabanera Coffeehouse. This month's theme was "Bogus." Inspired by the masked world that social media can sometimes be, I chose to write a satirical piece on the bogusness that can lurk in Facebook status updates. 

Hopefully it's clear that there's a lot of biting sarcasm in here and that I'm certainly not passing judgement (I am a social media fiend and guilty of many of these scenarios), but instead, making a social observation on the TMI world that we live in. Again, it's satire. 

Hope you enjoy!


-------------------------------

I’m going to call “bogus” on that recent flurry of Facebook status updates about how “amazing” your girlfriend is, how off-the-charts smart your baby is, how sad you are that you’re leaving that dead-end job you’ve been whining about to your Facebook friends for the last three months.

Bogus. What really happened? You are in the dog house with your girl and feel that some virtual PDAs about how she is the best, prettiest, smartest, most incredible girlfriend EVER will get you back into her arms — bed — whatever the goal may be. Or, even bigger bogus, that’s her posting on your account, and though it makes you feel awkward to have that schmoozy stuff out there, you know damn well what would happen if you pull it down, so the status stays. Don’t worry, we know it’s not you, it’s her.

You’ve been posting about how clueless your airhead boss is, how your colleague plays Words With Friends all day, and how the office kitchen always smells like day-old Chinese food. Suddenly, it’s your last day and you “heart” all of your co-workers and are going to miss them soooooo much? Um, bogus. That translates to “See ya later, suckas!”

Your two-month old said “mama” while cooing in the bathtub today? Bogus. I’m pretty sure it was gas and you are delusional, but hey, if it makes you feel better to say that her first word was your name then post away. Your newborn smiled and laughed when you played Carly Rae Jepsen for him today? Again, probably flatulence, but I won’t rain on your parade.

Update: “Friday night in by myself with a bottle of pinot noir and a Keeping Up with the Kardashians marathon. Ahhhh, perfect.” Again, bogus, this is just you trying to make yourself feel better for having put your pjs on at 6pm since all your friends ditched out on plans. Well, actually, that one’s not so bogus, it sounds like a pretty perfect Friday night to me. Carry on.

That photo of the tarragon roasted duck with demi-glace reduction that you cooked for supper? You make it sound so effortless with that photo caption about smoothly hosting Sunday family dinner: “Soooo nice to have all four of my siblings and parents here for dinner. I love cooking for them! [Smiley face emoticon]” What you forgot to mention is how many ducks it took, how you swore through the whole process, singed your pinky on the roasting pan and are so pissed at the pile of dishes, pots and pans you’re left with that no one offered to lend a hand on.

It’s funny how you never post pictures of the hot dogs, bowls of cereal, and pizza bagels you eat for dinner every other night of the month. What you wanted to say was: “hosting sucks.”

There’s nothing more infuriating – or at times a little gratifying – when Facebook statuses reveal how oh-so-bogus people’s real life excuses were. Oh, you are tied up with family and can’t pick me up at the airport? Weird, because your friend just checked you in at the bar and tagged you in a photo — Bud Light in hand — with the caption: “Happy hour with the crew!”

Hey there annoying co-worker who just told me that you’re swamped with spreadsheets today and there’s no way you could help me stuff this mailing …. It’s strange that your status was updated 10 minutes ago with a photo of your Bertuccis lunch, complete with Instagram filters. Must be a tough day for you.

We tag, we check in and we upload to put a persona out there — sometimes it’s the real us, sometimes it’s a totally bogus version, but that’s the beauty of it, some may suspect but no one can really know what’s lurking behind those cryptic Lao Tzu quotes or Ben Harper song lyrics: “It wouldn’t have worked out anyway, so now it’s just another lonely day.” Did you suddenly become a philosopher? Doubtful, this seems like a not-so-sly cry for inquiries about your mental state. Or, you thought that copying what your Dove chocolate wrapper told you would make you sound intellectual.

“Ugh, my hair is out of control, and I never have the right outfit to wear. Must update wardrobe. Feeling bluck today.” Sounds like somebody’s fishing for a compliment … . In roll the comments: “You always look amazing!”.  “What? I love your hair!”.  “You have the best clothes — you looked so hot in those pink cords yesterday!”. Well-executed use of Facebook as self-esteem booster.

Let’s face it, sometimes we all feel the need to brag about our little successes or daily frustrations —  inflated or not —  and will find any excuse to draw some attention. So what’s wrong with that? No one needs to know that you left that “epic” party at 8pm, no one needs to know that you didn’t actually go into the museum, but that you checked in just outside of it so we’ll all think you’re artsy fartsy.

We all need to feed our egos sometimes, and what’s better than a whole bunch of thumbs up to do that? But sometimes that veil between reality and virtual embellishment is far too thin. We can see right through it but play along anyway, because we’re all a little bogus at times, it’s way too easy to be in the contrived reality that is Facebook profiles, like buttons, status updates and newsfeeds.

Can’t wait to get to my phone to update my 5,000 closest friends about my night: “Just read a hilarious piece about social media faux pas to a packed coffee house of hundreds. The audience couldn’t get enough. Pulitzer Prize here I come!” 

Thursday, October 25, 2012

You Got Red on My Gold

You Got Red on My Gold
I was sitting here just steeling the show when those pesky little
berries had to roll in. They came to close for comfort as their reflection messed things up.
What would I say to them?   You Got Red on My Gold.
6x6 oil on gallery wrapped canvas.
For sale or auction at my DPW gallery. Just follow the link to purchase via PayPal.
I know once again I am pushing Christmas. Why? Because I love it.

Proud Member of the Chevonnetourage

Craig and me with Chevonne putting our paws up before 
her performance at the Lady Gaga concert in Houston.
I get really jacked up when I see someone find their passion, work hard to follow it, and find success. When I know that someone personally I get just that much more excited.

This is the case with Craig's cousin, Chevonne, who I believe I can stake a claim to as my cousin also, since I'm married in, and because I have only one recently acquired (finally!) cousin of my own. As Craig and I have been together for 12 years, I've gotten to watch her grow up, was there celebrating Bat Mitzvahs and at her family's home for many a Chanukah gathering.

She has a ridiculously incredible voice and has been honing her talent for years, studying music in college and coming out of school with a bang. I remember Craig and I going to see her play at a dive bar in Danbury, Conn. years ago. She told us how she had to drive all over the boroughs of New York City to pick up the members of her band and get them together for the gig. Band members were pulling out on her all the time and she was constantly having to adapt and regroup. She was lugging all of her own equipment, making her own staple fashions to wear, but all the while lighting up the stage like she owned it – because she did. She belted out her original songs and accompanied herself on her keyboard. I was so impressed then, leaning on a bar stool watching her performance beside her parents and Craig.


Fast forward to 2010-11 when she landed a gig touring as a backup vocalist with Lady GaGa on her Monster Ball tour. What?!? I know. This was after performing with another pop star, Estelle. She went after it and she got it and I love that. Craig and I happened to be living in Houston when she was on tour there and we got to see her perform. I couldn't even wrap my brain around it and was like a sappy proud mom watching.

Fast forward to today when she is competing on NBC's The Voice, viewed by millions on network television. Her "battle" aired Monday night, the last in the battle segment of the competition. I was all sweaty palms and excited belly knowing that she was going to be on. Craig and I watched eagerly and fist pumped at the TV when she stood up strong to her also-very-talented competitor. She belted out her own rendition of "Titanium" by David Guetta featuring Sia. As Christina Aguilera – pop diva herself – said before stealing her onto her own Voice team, Chevonne's "stage presence was ammmmaaaazing." She worked the crowd, the stage, and her opponent. She may be a petite little thang, but her voice packs a huge punch and her energy and aura is boundless. Oh, and that hair, I love it so! My own curly mane is envious. 

She is dynamic, tenacious, focused, intelligent, sweet, driven, and talented beyond words. That's what it takes to make it. Her combination of passion, individuality and serious pipes has already taken her so far at just 26 years old. I've been honored to follow along and learn from her steadfastness. It lights a little fire under me to push harder in my own craft, and I'm grateful for the inspiration. 

Check out her battle below and tune into The Voice Mondays and Tuesdays on NBC. 

Join the #chevonnetourage on Twitter: @listen2chevonne and on Facebook: Facebook.com/listen2chevonne

Download her solo rendition of "Titanium" on iTunes: https://t.co/A3FANnu6 

Wednesday, October 24, 2012

Hang Over

Hang Over
Ever just had those days when you feel down. You can't seem to hold your head up high. 
Some days you just seem to be suffering from a Hang Over even when you refrain from strong drink. 
Sometimes it is just one of those days.
6x6 oil on canvas panel
SOLD

Tuesday, October 23, 2012

I Escaped

I Escaped
Look at that delicious pie. Sweet and tart just like grandma used to make. Guess what?
I am sitting her saying this only because I am so clever. Yep...I got away, I escaped. Right when they 
were reaching for me I rolled right off in the floor and hid under the table. I snuggled up real close to the leg
and then I smelled that wonderful aroma and knew that I was safe. A hand picked me up and placed me
right back on the table so near that piece of pie that I can still feel the warm heat from the oven. Almost seems as though I am goodying them. Well I kinda am goodying them. So glad that I escaped and 
will be around to tell this incredible story to my grandchildren. Oh no....Oh no....tell me it ain't so they are 
coming back to get me. She is licking her lips and she ain't looking at that pie. Here I go again. 
Splat I am on the floor again.....Give me a little hand how bout you say a little prayer for me right now. I might not be so lucky next time..............
SOLD 5/2013
6x6 oil on canvas panel


Monday, October 22, 2012

Chosen

Chosen
Why are we in this jar while y'all are out there? I am worried, I am fretting, I am 
a little sad well that was until I realized that sometimes things are not what they seem. Sometimes when
we are in an unlikely situation it is because we are special. It is because we are chosen.
Oil on 6x6 gallery wrapped canvas
For sale or auction at my DPW gallery just follow the link to purchase via PayPal

Sunday, October 21, 2012

Opened

Opened
I attempted a flower and I think it reminds me of a blooming onion instead.
6x6 oil on canvas panel.

When The Sun Is Shining.

When The Sun Is Shining
I found this photo of a still life setup with the sun streaming in the window. It 
made for nice stripes in the background. I am pleased with this one. Today another
new color introduced. The color today is another Master's Touch from Hobby Lobby.
Again poor pigment but still nice color. Blue Grey. I did like it I will be experimenting more
in the future I think.
6x6 oil on gallery wrapped canvas
No longer available.

Saturday, October 20, 2012

Saving Grapes




Saving Grapes
I usually paint with a limited palette but sometimes feel a little 
stagnant in that. I find that without really meaning to I always use a lot of blue. 
I decided to try some new colors for a fresh change. Only one new color was 
introduced besides my norm. The new color is Master's Touch from Hobby Lobby. 
The color is not artist grade but is still nice if you can look past that. Today I used
a nice blue called LT GRAPHITE
I will use it again. 
Oil on 6x6 gallery wrapped canvas.
This is for auction or sale at DPW check out my gallery there.

Friday, October 19, 2012

Apple Happy

Apple Happy
I guess I named this because both apples and the color red make me happy. Speaking of
happy I was at a dept store today and a young woman was talking on her cell phone but what 
caught my attention was that she had an infectious smile on her face. No giddy laughter or chuckles, Just a sweet sincere smile. It really did make me smile. Sometimes I have noticed myself talking to someone
about nothing really but I realize I am smiling. Doesn't it feel good when that happens?
6x6 oil on gallery wrapped canvas
This painting is for auction on DPW or for sale there please check out my gallery



Poetic Therapy

This isn't the first time I've posted this poem by the poet we met in Old San Juan, Puerto Rico, but its sentiment is again very appropriate. It's what I strive for – to let go of the expectations and let things go unanswered.

When I was very sick in the hospital recovering from my transplant, I'd have whoever was with me the latest read me a poem to put me to sleep. I had several books of poetry in the room with me and I'd let them choose which to read from. It was soothing and calming and digestible at a time when weighty prose was too much. Poetry helped me to envision beautiful places or just get transported by the words and rhythm. With my mind quite overwhelmed right now, little by little sounds just about right.

Little by Little

I'm letting go little by little, but I am
It sometimes hurts. I sometimes cry.
I sometimes erase it all
And sometimes I try and I can't.
But I'm letting go. I am.
That's just the way I am.
I can't help it anymore.

My mind races.
Unlike the hare
Who had patience to compete.
I'm racing to defeat myself.
It's torture in a shell
My heart has been to hell
I'm letting go.
Little by little, but I am.
I learned that now I can.

Sometimes it's good.
Sometimes it's ssweet.
There are times too
That I never meet a standard.
Where questions flow unanswered
And it's okay in itself.
I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.

I'm letting to. Little by little.
But I am.

-Lady Lee Andrews

The Red Tailed Hawk...in Flight


Wooden panel with mosaic of tempered glass over antique handwritten French letters, antique crystal, antique silver leaves, bone, swarovski rhinestones, red seeds, copper wings,Reiki blessing symbol



Thursday, October 18, 2012

Some Behind

Some Behind
When I painted this I put in the distant flowers first. Usually I paint in a different
sequence but not today. Today I am a rebel.
7x5 oil on canvas panel
For auction or sale at my DPW gallery just follow the link to purchase via PayPal

Wednesday, October 17, 2012

Morning Blend

Morning Blend
A fresh blend of coffee. A few blueberries together they make the perfect
morning blend. I could not resist adding that little clear glass creamer pitcher.
5x7 oil on canvas panel.
For auction or sale at my DPW gallery just follow the link to purchase via PayPal

The Buts

I want to sleep in late, but Sammy dog has to go out and get fed and so do I, so I get up.

I want to be productive and wildly incredible every single day, but then I get tired and those plans unravel quickly.

I want to roll back over under the covers, but the morning sun shines brightly in my window coaxing me awake, and I can’t deny that.

I want to ignore the dishes and the laundry, but Craig and I have to eat and we have to wear clothes, so eventually I stop ignoring them, and I wash them.

I want to wallow in my pain, but then I remember that everything is still in tact – I have 10 fingers and 10 toes, I can walk, I can talk, and I’m still breathing, so I get up and utilize them.

I want to hop a flight to Paris – or maybe Fiji – and never look back, but I stay because I have a husband and a dog and a home that I love more than anything.

I get angry, but then I smell the crunched-leaf scent of fall, see the tree colors getting impossibly more vibrant, have a calming visit with a friend, hit my stride on a writing project, or see a video of my nephew singing in his underwear, and I can't be angry anymore. 

I want to pretend the toppling stack of medical and household bills isn’t there and just count it as part of our kitchen décor, but I stop pretending, and I go through them because homelessness and collection agencies don’t sound like any fun.

I sometimes complain that I got dealt a bad deck, but then I realize how damn good I’ve got it.

I’m unsure of my body’s capabilities, but then I test them and I’m always surprised that it can still take me where I want to go.

Sammy at our look-out spot above the valley.
I want to cry when I see a pregnant woman and know that’ll never be me, but usually I can hold my composure, at least until I get back in my car.

I get frustrated that I’m exhausted all the time again, but then I think of the alternative and frustration turns to gratitude.

I want to punch people in the face when I see a cigarette in their mouth, but I don’t because I have some sense of self-control still (though I’m not making any guarantees on that one).

I want it all to stop: the decisions, the confusion, the side effects, the questioning, the fear, but then I don’t want it to, because that would mean it’s over, and I don’t want it to be over.

I want to give up sometimes, but I love life too much, so I don’t. 

Tuesday, October 16, 2012

Just A Little Drink Of Water

Just A Little Drink Of Water
I was very very thirsty and then some sweet soul placed me here in this vase. 
I thought I would never get my fill even though all I really wanted was 
Just A Little Drink Of Water
5x7 oil on canvas panel
For auction or sale at my DPW gallery just follow the link to purchase via PayPal

Monday, October 15, 2012

Cherry Chirp




Cherry Chirp
I do know that birds are suppose to eat those little red berries which hang on trees.
From my standpoint these look like a little too much for me. I think I will pass.
7x5 oil on canvas panel
Available for bid or sale at my DPW gallery just follow the link to pay via PayPal


Sunday, October 14, 2012

Pickled Okra

Pickled Okra
Okra is one of those things which you either love or hate. I myself love it. Yesterday
my co worker brought some pickled okra to work. Her grandmother made it. I thought it looked
so pretty in the jar that while she was working I was in the kitchen snapping photos with my iphone.
Paid off Huh?
7x5 oil on canvas panel
Clear Glass Again...
 

Back on the Revlimid Saddle


A visit to Dr. O’Connor with Columbia/NewYork-Presbyterian in NYC confirmed my gut instinct that giving the immunomodulating drug, Revlimid (lenalidomide), another go is my best move at this time.

Revlimid is not a new drug to the market, but the concept of using it for refractory Hodgkin Lymphoma is. It has proven to work well against Multiple Myeloma and in recent years proven promising for those of us who have relapsed after an allogeneic stem cell transplant as a way to ramp up our new immune systems to better attack the cancer cells.

It is an oral drug that I take once per day. I’m starting off at 10mg to see what my body can take, with the plan to increase to 20mg daily. The drug works to wake up receptors in my body’s Natural Killer Cells (a type of white blood cell) to recognize receptors in the cancer cells, bond to them and then disintegrate those foreign Hodgkin cells. This is different than traditional chemotherapies in which it’s the drug itself that is doing the cancer killing. This type of therapy is focused on getting my own immune system to work against it.


I was on this drug for one cycle from November through December last year through Sloan-Kettering after I had disease progression following my allo transplant. Though I only had a few doses at 5mg, I experienced very severe pain in my hips and lower back – where I have the highest disease concentration. I was taken off the drug and put on traditional chemo to melt the disease.

There was some talk at the time that this reaction was instead “tumor flare” meaning that my white blood cells were all flooding to the disease site (as the Revlimid is supposed to cause them to do) and causing a huge inflammatory response in my bones. Being that there is not a lot of room for extra stuff within our bones, that caused tremendous pain. I saw Dr. O’Connor at this time for a second opinion and he absolutely thought it was a flare and that it was a good thing. Dr. Dailey also brought up the concept to me. But at the that time, there was a whole other team of doctors who thought that it was in fact disease growth and that I needed a known chemotherapy agent to melt it, so that’s what I did, making the best decision with the information that I had at the time.

Now, it’s a new time. My body is in a different place and we’re giving it another go. Not only do we hope that I will get some disease reduction and Graft vs. Lymphoma effect – which may also come with some Graft vs. Host effect – but being on this treatment will also give me a rest from traditional chemotherapy. Dr. O’Connor warns of the importance of keeping my body strong and keeping the disease from continually becoming resistant to chemotherapy agents. In his words: “We need to find something that will work for more than four minutes.” Amen.

I have made the decision to receive the drug under Dr. Owen O’Connor’s care and for now have transferred from Sloan-Kettering to Columbia/Presbyterian. This means a whole new system to understand, new doctors and nurses, new protocols, and lots of paper moving to get my records from one institution to the other. However, Dr. O’Connor is literally the scientist who invented this drug and is obviously well versed in how it works. He is treating many other patients with the drug who are in my exact situation and is well versed in how to manage its symptoms and effects and tailor it to each specific patient. I feel confident in his expertise, his reputation, and his incredible smarts as both a scientist and a clinician.

There will always be the Phase I/II clinical trials I can opt into, but we’re going to first try for a drug that already has proven anti-Hodgkin effects and one that will give me the freedom to take it at home. I will be able to get my bloodwork checked locally and as long as I escape any severe side effects, won’t have to go back to NYC for eight weeks when we’ll likely check a scan.

I met with Dr. O on Columbus Day. We watched some of the parade out of the window of his office at 5th Ave and 60th St, across the street from FAO Schwartz. Following that day, I really went into a downward spiral. It’s been five weeks since I’ve been on treatment and I’d been feeling my normal symptomatic Hodgkin’s symptoms creeping in. By Wednesday I was in full flare-up.

After three months on the Prednisone steroids I was finally at the end of my taper, dropping off completely on Wednesday after 10 days at 2.5mg, the last step down. That night I started spiking low-grade fevers in the 99-100 F range then woke up in the middle of the night so flushed with a fever of 102. I woke up a few hours later completely drenched having soaked through all my clothes and our bed sheets with a combined fever-breaking and night sweat. My days had been filled with chills, unable to regulate my body temperature. Thursday I could barely move my body it  was so enflamed, achy and fatigued.

In talking with O’Connor’s Nurse Practitioner, who I am now in constant contact with, she told me that my Sed rate, which measures inflammation in my body, was 100mm/hr. Normal range is 0-20mm/hr. Obviously, my body is in inflammatory overdrive trying to wage war in there. My fevers and malaise concerned them as well and it was decided to put me back on to 10mg of Prednisone for worry that my body was going into withdrawals, having become so dependent on the steroid to produce hormones for me and that I may be experiencing adrenal fatigue.

Fortunately, the Revlimid arrived by UPS on Thursday afternoon and I was able to take the drug that night. Between the treatment pill and the prednisone, my fevers have subsided. Despite the little steroid kick, I’m very fatigued. I have been experiencing pain in my hips and back, but nothing that hasn’t been mostly eliminated by Aleve. I’m a little woozy, a little off, a lotta achy and gassy, but so far overall okay on the medication. Funny how my standards lower. I am glad to be rid of the fevers, which were completely debilitating.

I’ll be in touch with the Columbia team on Monday and we’ll work together to keep titrating the Revlimid and the steroid for maximum effect so as to get the best reaction from my immune system, without too much pain and keep me out of pain without using too much steroid, which suppresses the immune system. It’ll be a constant balance.

In other life, my mom and sister came over for the day on Friday to be there in case I had some crazy reaction to the drug. I was pretty nervous of the pain to be honest. They cleaned the house for me, we watched a movie and they brought me girly, trashy magazines. Later that night our men joined us: Craig, my sister’s boyfriend, and my Dad for dinner, then later that night, my brother and his new wife. It was a packed house and I loved having everyone here hanging out together watching funny TV shows and catching up – Sammy spreading her dog love among everyone.

With the Uconn/School of Ed Crew
I skipped the first three hours of the tailgate, but did make it to the UConn football homecoming game, an annual tradition that I was so happy to make it to and be able to spend time with the UConn crew. I consider myself an honorary alum having spent so many weekends there while Craig I did the long-distance dating thing. This afternoon I get to see my UNH roomie, Frankie, who’s in CT for a family wedding. Very exciting!

As my immune system balances, I’m still working hard to keep my life from toppling over as well. My heartache over the loss of Steve hasn’t waned and neither has my fear for what is happening to me, but I know that time will heal and the fear will again become more manageable as I settle into this new treatment pattern and again come to terms with my ever-changing body and its needs.


Saturday, October 13, 2012

A Bug In My Cup

A Bug In My Cup
I continue my quest to paint clear glass things. I got this cup for my daughter while we were on
vacation this summer. It is not as fragile looking as I wanted but it certainly will not be the last.
12x12 oil on gallery wrapped canvas
SOLD

Friday, October 12, 2012

Measured

Measured
I am wonderful. I get to decide how much of anything I choose. I get to 
measure and if they don't measure up....Oh Well you get the message.
Oil on 6x6 gallery wrapped canvas
For sale or auction at my DPW gallery follow the link to purchase via PayPal

Red Hawk flying....

added the eye....began placing the tempered glass....tomorrow I'll attach the glass and grout.......

Thursday, October 11, 2012

Peas In A Pod

Peas In A Pod
I am continuing to pursue my studies of clear glass but today I thought I would
throw in a printed cloth. Do I like it? I haven't decided yet.
Oil on 6x6 gallery wrapped canvas
For sale or auction at my DPW gallery. Just follow the link to purchase via PayPal

The beginnings.....

Can you see a red tailed hawk head in this piece of bone?  I don't know what the bone is part of...but for me, it's now a red tailed hawk, and I'm inspired!....

An inspiration for a Reiki Wall piece....stay tuned..... :)

Wednesday, October 10, 2012

White with a Touch of Red


White with a Touch of Red
Painted for a challenge at www.paintanddrawtogether.blogspot.com
6x6 Oil on gallery wrapped canvas
Sold

Everything Changes, Nothing Is Lost


A little piece of my heart left me on Sunday. My incredible friend, my inspiration (he’d hate me calling him that, but it’s true), my cancer counterpart, Steve Dickter, passed away on Sunday, enduring complications from his donor stem cell transplant.

Jen, Steve and me at our first in-person encounter. 
I’ve never had such a physical reaction to news. I saw the simple two-sentence e-mail from his wife, Jen, with the subject line “sad news” and I burst into violent, choking heaves of crying. I got so hot and kept pulling off layers – unzipping my jacket, clumsily unraveling my scarf that suddenly began to strangle me.

Craig pulled over the car not having any idea what I was reacting to until I threw the phone at him, he read the message, put his hand on my leg and let me sob it out. He was visibly reeling as well. When I could finally speak, all I could say was that I felt like my heart had broken. My chest was in knots that have yet to untangle.

Steve and I were partners in this cancer journey. We were the ones that were going to make it far past this. He was my constant sounding board, advocate, interpreter, and reality check.

In the crazy, uncomfortable world of cancer treatment where no one knows what to say, he always had the right words. He was very real and honest, witty and ballsy. So smart and so modest. Steve was as authentic as it gets. He was kind, loyal, compassionate, thoughtful and genuine.

He was just a few years older than me. We had the same disease. We had the same attitude toward it: action, defiance, education, at times, acceptance and frustration. We endured all the same drugs. He also had a spouse that loves him tremendously and he the same – a beautiful relationship. We both were in the communications field. We both got riled up about current events. He wrote a fantastic blogfull of clear, funny, sarcastic, insightful and informative writing. We both loved music and lyrics and quotes. Eddie Vedder’s “Rise” was one of our shared motivation songs and he introduced me to Colin Hay. The only thing that separated us was the whole of the United States – he stumbling through this on West Coast time, me on East.

His blog was the first that I found of someone just like me; he seemed like a very cool person that I’d want to be friends with and we just happened to have the same disease. I reached out and he e-mailed right back saying, “Woah, where have you been?” returning the blog compliments I had given him after he read through my posts. I found him in the very beginning, just six months into my treatment. He was ahead of me, so I was able to learn from and follow his lead, his tips on side effects and coping mechanisms, his ups and downs. Then I relapsed first, then he relapsed and followed me, then I, then he. Our paths have been so, so similar.

Our relationship grew and evolved together as we got deeper and deeper into this journey. We rejoiced in each other’s positive news and were defeated when we heard of relapses or infections, always there for each other to lean on. The messages from him and his wife resonated on a different level.

After e-mailing for a couple of years, we met for the first time in person in New York City, and I hung out and talked with him in his friend’s apartment like we’d been best buds since the elementary school playground. When we parted ways after grabbing a bite with Jen, he gave me a huge hug on a city curb and said: “I love you, Karin Diamond.” And I said, “I love you, Steve Dickter” back. It was one of the most real exchanges I have ever had in my life.

We stayed with Steve and Jen in LA the following year and felt as if we’d been in their apartment many times before. Steve and I napped in between the day and evening events, while Jen and Craig sat in the living room and talked caregiver and life talk while we patients rejuvenated.

We went out to dinner where we shared so many laughs – especially about the odd rotating white board listing that evening’s offerings, which would be crossed out by the minute as they were ordered by others – decisions had to be made quick. We laughed a lot about this.

When things got hard, he would tell me that it wasn’t me, that it was the drugs, not us, making us walk around like zombies until our spouses came home to infuse some life into us. He helped me to know not to blame myself and helped to teach me that we can’t let this disease limit us: he was teaching college courses during treatment and pursuing his Master’s degree in communication – writing his thesis while an inpatient in transplant recovery, while also managing several fantasy football leagues, and somehow remembering to check in with me.  

Steve attached this word art to the last e-mail he sent me.
We talked about how our ovaries hurt when we see cute babies, how we hate that we can’t always be there in the way we want to for our spouses, about our futures and all of the beautiful things they held. We would joke about how life doesn’t give a shit that you’re in cancer treatment and it still brings the normal drama of everyday life to manage: flooding basements, unplanned townhouse repairs.  

We talked about how people would tell us we’re inspirations or heroes and how that’s so hard to accept as all we’re doing is what needs to be done. But then, we’d each find ourselves calling each other that. He told me I had Moxie. We said that we were each other’s lights in the tunnel. 

We had a sadistic humor that we could be comfortable and open with, making each other laugh in really horrible situations.

He helped me see straight, he helped me find treatment drugs, he helped me clean up my treatment timeline document so that I could find the doctors I needed. We sure didn’t want this situation, but we both did our fucking best with it, managing our lives with clear focus and determination, but keeping the fun factor alive.  

He always told me that: “This too shall pass.” I suppose it’s a reminder that everything is transient, including the lives of those we hold the most dear. He has passed, but I am forever grateful that he passed through my life. He was one of my greatest gifts.

I am deeply saddened and hurt so badly for his wife Jen, the most devoted wife, friend, caregiver, and cancer researcher I’ve ever come across. She is a beautiful person, and I wish that she didn’t have to deal with this heartache.

It’s going to be very hard to move on in this without him. I have a huge hole in me. I can’t stop reading the posts on his Facebook page and looking at the pictures friends are posting of him from a life before I knew him. All I can do is carry his spirit in my heart and let it guide me through this and defeat this disease for the both of us.

His birthday is my donor stem cell transplant re-birthday, and I’ll forever dedicate June 16 to him. Right now, I’m just in total disbelief and it hurts very badly; I’m grieving very deeply. It’s not supposed to be this way. I miss him and my heart hurts for beautiful Jen.  

He told me that this was one of his favorite mantras: "Omnia mutantur, nihil interit" (Everything changes, nothing is lost.). This change is a tough one for me to swallow, but I know he is not lost because his light will carry on in the love and the lessons he left the countless people whose lives he touched while here with us.