In Daddy's Chair

In Daddy's Chair

This cute little dog is in Daddy's chair and guess what?

He gets away with it. Who would put him in the floor. 

Not with eyes like that.

5x7 acrylic on canvas panel

Paypal available

Stick Horse

Stick  Horse

A little boy only dreams of someday, someday when he will have to

feed his horse but for now this will do.

10x8 acrylic on gallery wrapped canvas

This is a different venue for me. Both yesterdays and todays post are more loose

with suggested areas. I almost chose not to post these but overcame my apprehension

 No Longer Available
t. 

Barn Squared

SOLD

Barn Squared

Painted for a challenge at DPW

This was certainly a different challenge. You do learn a lot with any thing

that makes you think outside the box.

Paypal available

5x7 acrylic on canvas panel

Barn Squared

Gossip Club

Gossip Club

Four Pears all of them different.

These were quite fun to paint. I did spend a lot of time painting the light.

Acrylic on gallery wrapped canvas

8x10

No Longer Available

Ahhhhhh......................loha nui loha.....

"To us, our house was not unsentient matter -- it had a heart, and a soul, and eyes to see us with; and approvals and solicitudes and deep sympathies; it was of us, and we were in its confidence, and lived in its grace and in the peace of its benediction."
Mark Twain

The Watering Can

The Watering Can

She slips out to granny's garden. Oh no! the flowers are

wilting. She runs back to the shed and finds it, her little watering

can. She is happy as can be as she sees the wilted leaves perk up.

This is a good day, a day for memories.

10x8 acrylic on gallery wrapped canvas.

No Longer Available

Tell The World

After 12 weeks and 1 day of being away, Friday night I am coming home.

Pot Head

Pot Head

The richness of this vase just caught my eye and I knew that I had to paint it.

8x10 acrylic on gallery wrapped canvas

No Longer Available

A Newcomer to the Treatment Game

It's been an eventful week in Manhattan. We had an earthquake, a hurricane, and I started a new novel therapy drug. I've gotten through it all relatively unscathed, except for the nausea and that unmistakable woozy headed feeling that every drug brings.

I'm now a cancer, three-time transplant, earthquake and two-time hurricane survivor (Dean 2007 on St. Lucia and Irene 2011 on Manhattan.) I don't think I'm going anywhere anytime soon. I've got about what? Three lives left?

The treatment plan has been tweaked a bit again. I agree with the science and efforts behind it. I understand the necessity. I realize that this may be the only way we can keep ahead of the lymphoma. But even with all of the positives surrounding this plan, it is draining on my spirit and my body to yet again be putting more toxins into me – novel agent or not – even non-traditional chemotherapy treatments can take their toll. I learned this on the clinical trial of Panobinostat and Everolimus at MD Anderson. Going back onto therapy is difficult for my psyche to take. I’ve been on the healing tract and had been so encouraged to think that I’d never have to take more treatment – ever. But that is now the case and I need to focus on the positives that it will bring.

We now have the final radiologist’s report on my PET Scan and a more solid plan of attack. The spot behind my breastbone – the spot that’s always flared up first after every single chemotherapy agent – is inconclusive. There is still the chance that it is just my thymus gland revving like crazy. However, because of my history of quick relapses, we are treating it as if it is the Hodgkin’s trying to flare up. The same goes for the spot on my sacrum/pelvic bone. It is showing a very, very mild amount of uptake on the scan. The radiologists are measuring it as just above background level. These spots are each very faint and nothing tremendously alarming. However, the idea that the lymphoma could be flaring and the worry that it will grow faster than my new immune system can go after it actually is quite alarming.

But Dr. Sauter and his Sloan colleagues have a plan for me. He has seen this in his other refractory Hodgkin patients as well. This plan has actually always been in the back pocket and we talked about it several times while I was undergoing the transplant itself. It’s kind of a “seal the deal” plan. We knew from the beginning that my case would be a difficult one as I’ve heard again: when Hodgkin’s Disease is bad, it’s very bad.

Dr. Sauter did some of his training at the University of Michigan and his colleagues there are doing investigations into the targeted novel therapy drug, Vorinostat, as an agent to prevent Graft vs. Host Disease (GVHD) in allogeneic stem cell transplant patients. Vorinostat is an FDA approved drug, but not tested widely in refractory Hodgkin Lymphoma patients, though it has demonstrated promise. Vorinostat is a sister drug of Panobinostat, which is also an HDAC protein inhibitor (a protein found in HL cells.)

I was put into a very good remission from the combination of Panobinostat and Everolimus before going into my allo transplant. So, the hope is that the Vorinostat will also have some disease fighting effects against any lymphoma inside of me in addition to possibly preventing graft vs. host disease altogether. One of the immunosuppressants I am on – Sirolimus – is a sister drug of the Everolimus so hopefully I’ve been getting some anti-lymphoma effects from that over the past two months as well.

While adding the Vorinostat, we are also tapering me off of the Tacrolimus and Sirolimus immunosuppressants, therefore letting the reigns off of my sister’s immune system. This weekend I’ve been taking more of each to get me up to therapeutic levels before we start the taper – ideally tomorrow.

I asked point blank if I’m in a bad place, if this means the transplant failed and was assured that no, not at all. My case has actually been quite simple up until this maneuvering that we’re doing. Again, we haven’t even given my sister’s cells the chance to go after anything. Now we are going to both “push and pull” against the disease by doing some “jiggering” to keep it at bay. Dr. Sauter is still encouraged and so am I.

Basically the Vorinostat novel therapy agent is an added insurance policy to bridge the gap between the (possibly) growing lymphoma and the time it will take for my newly minted immune system to be able to recognize the lymphoma cells as bad and take them down. It should also help to balance my sister’s cells as we release them on the attack with the threat of GVHD being closely monitored. I’ll remain on the Vorinostat twice a day for about four weeks over the course of the immunosuppressant taper. Then it will be time for another PET Scan. Hopefully there will be no drama from now until then.

If this week stays drama- and GVHD-free then there is still the possibility that I will go home next weekend – as in six days from today. I’m doing my best not to get my heart set on that as I know how quickly things change, but oh is it an exciting prospect. Craig and Sammy Dog are both home now waiting for me, and Sammy has been reunited with her favorite river. My friends and my mom and her friends whipped through the whole house giving it an impeccable clean in advance. My Dad put four new tires on my car. All is ready for life at home. I just need to get there.

My mom is here with me now and we’ve spent her first few days anticipating and now coming down from all the hype over Hurricane Irene. We walked along the streets last night just before the skies really opened up and it was so eerily quiet. I live just up the block from Penn Station – one of the most highly trafficked areas of Manhattan – and there were only scatterings of people on the street. Gone were all of the buses and all of the street vendors. All public transportation shut down and every store in this concentrated shopping area was shut tight: even the Manhattan Mall across the street. It’s still a ghost town today.

We fell asleep to the sounds of strong sheets of rain barreling against our 12^th floor windows and were jostled awake a few times by the creaks and shifting from the high wind gusts against our 59-floor high-rise apartment building. But the morning brought only wet streets and the warm, heavy feel of tropical air breezing through the concrete alleys formed by all the towering buildings around us.

Last night all of us patients and caregivers were a little punchy with anxiety and anticipation. We had quite the raucous crowd gathering in the kitchen. We laughed and laughed until we realized we had all gone a little crazy. After all of that excitement today we’re having a sleepy day today composed of eating, napping, reading, writing and games of Rummy 500. We hope to get out at some point back into the streets. I miss being around Craig terribly, but I love having my mom here with me and cherish this time we have together, as crazy and unpredictable as it may be. How lucky I am to be surrounded by so much love.

Tomorrow we’ll go back to clinic and I’ll see the doctor covering Dr. Sauter’s vacation and find out my release fate. He already signed the papers saying that I could go back to CT if I continued to feel well, but this doctor will have to make the call. I plan to dress to the nines and put on my biggest smile. I am ready, ready, ready to go home but I know that I need to do what is most prudent. I’ve come this far. It’s coming up on two months here at Hope Lodge: three total in New York City. Even if it’s just for a night I am in desperate need of my own space, freedom, fresh air and woods. I want to be home in time to see the leaves change.

[Washington Square Park the day before the storm]

[Manhattan shutdown]

[Calm before the storm]

[Prime storm viewing spot in the common area]

Seven Links Project

Karla Uphoff Has sent me this fun project. I thought I would give it a try.
I am very honored. You can visit her blog at
 karlasplace-karla.blogspot.com




Most Beautiful Post
New Beginnings
Alright! I know you probley won't think this is the most beautiful post but
I absolutely love this. The photo of it does not do it justice but I love it, so there.

Most popular post
Untouched
I was surprised by this one also
It was the most popular though. 7x5

Eyes Wide Open

Had to list two in this catagory because they were both popular

Most Controversial Post
I only say controversial because I am a christian and I painted someone
elses god. Painted for a challenge. 7x5

Most Helpful Post
I view this as my most helpful post.
Helpful to me as I learned a lot about lights and water.
Ghost Ship    5x7

Post whose success suprised you
I painted this for a friend who was leaving.
Midnight Move.
I was surprised about the popularity of this one.

Post I didn't think got the recognition it deserved
Maybe because of the photo of this it wasn't most popular but this is a very
nice in depth painting. 7x5
Red Hot Chili Peppers Times Two

Post I Am Most Proud Of
Candy Neckless
I gave her candy necklesses and she put them all on at once.

I painted this about three years ago and yes there is a lot about it that I would change if

I painted it today but what can I say? This is my grandaughter Michelle. 20x16

Thanks Again Karla

Tipped Over

Tipped Over

I am intrigued by squash, goards,and pumpkins. Actually I am intrigued by a lot of things.

I guess as most other artist I almost drool at shapes and values, hues and down right color.

I found these goards at wetcanvas and had to paint them. I have struggled to develop my STYLE.

What I ask myself  is my style? Sometimes it seems as though each and every time I sit down to

paint the canvas is new and I have forgotten how I did it the last time.

Yesterday and today I started out drawing

my intended painting which I rarely ever do but I am ready for some change. I also painted on 12x12

a change from my comfort zone of 5x7. Who knows what I will do tomorrow but as for today I am

pretty happy with the results.

12x12 acrylc on gallery wrapped canvas

Paypal Available

Fright Night

Fright Night

Painted for a challenge at http://www.dailypaintworks.com/

8x10 acrylic on gallery wrapped canvas

No Longer Available

When I Fall In Love

When I Fall In Love

This painting makes me think of love. The bold play of color, uncontrolled

brushstrokes, the play of light, reflections and even hidden things, things which need

a closer look to study its truth. Thus the title: When I Fall In Love

12x12 acrylic on gallery wrapped canvas. Edges are painted

Unavailable

Just Some Little Pink Flowers

Just Some Little Pink Flowers

I love clear glasses and hand picked flowers. There is just something about them, the

thoughtfulness of it all. These are for you. 

8x10 acrylic on gallery wrapped canvas

No Longer Available

Day +67 Scan Update

I got news yesterday that's pretty much just that: news. It's not necessarily bad, not necessarily good, just news. I prepped for that scan and that news on a blanket under a tree in Carl Shurz Park on the Upper East Side. The park is stunning and magical and it was the perfect place for both Craig and me to get our anxiety in check as we awaited my evening scan procedure.

My PET Scan did show a bit of uptake in two places: in my chest near the thymus gland and on the right side of my sacrum bone. These are two spots that have shown metabolic activity in the past and have been likely sites of disease. However, I do not yet have the full radiologist's report detailing what they think is happening this time around. PET Scans are finicky and ultra sensitive. Potential of false positives is high.

On initial read, Dr. Sauter thinks that the spot in my chest is just my thyroid being highly active, in a hyper state after the trauma my body's gone through. The thymus gland is the center of the immune system where all the T-Cells are created and that might just be what is happening – lots of T-Cell growing as my new immune system is still building. The spot on my sacrum may be some lymphoma, but it is very small. Dr. Sauter says that if anyone looked at just the CT portion of my PET/CT Scan that they would never think I have lymphoma – it is all clear. But before making any conclusions, he wants to get the radiologist's read.

There is nothing shocking or exploding regarding cancer growth on my scan pictures so this is very good news. I don't think any of us are surprised that there may be a little activity and this is not the end of the world by any means. My oncologist said that the only reason we even consider it to be lymphoma is because of my history. If it was any one else's scan, the tiny hot spots showing wouldn't signify disease.

In short, it is not the perfectly clear scan I had at 30 days but it is far, far, far from disease ridden scans I've had in the past. It's now time to give this immunotherapy thing a chance to work. We know that the strain of Hodgkin Disease I have is resistant to chemo, so it's no surprise that the lead-in transplant chemotherapy did not put me into a long remission. That is why I went through this whole process in the first place. Now we're going to go after those tiny cells in a whole new way – forever.

So, onward we go with the slow taper off of my immunosuppressants. This was always to be the plan around 60 days. For these first two months my new growing immune system has been held to therapeutic levels. Now we are going to start letting off the reigns very slowly. The hope is that as we do that, my sister's donated cells (the graft) settles in with my body (the host) almost seamlessly. We want my sister's immune system to be different enough from mine so that it will recognize and destroy the lymphoma cells where mine couldn't, but not so different that it recognizes my body as foreign and goes after it ... but we want it to a little bit because that means it's likely going after the lymphoma too ... it's all very confusing. Now I just watch for any symptoms of Graft vs. Host Disease (GVHD), report them, and they'll put me on the drugs to fix it.

I have a good enough handle on the process where I feel comfortable. I'll leave the details to the professionals. I know that I am in very good hands here at Sloan. They've got this figured out. I'm just along for the lifesaving ride.

In very, very good news, barring any unforeseen severe GVHD symptoms during this first week of tapering, I will get to go home on Labor Day. This idea thrills me, but I'm trying not to get ahead of myself. I'll be sent home when it's safe and when the time is right – fingers crossed that is in 12 days! I'll be back to NYC weekly, but it'll be so wonderful to be at my own home in between.

Craig left for home today to get his classroom set up and started with the school year next week. Being apart will be very sad and difficult for us – to say the least. But we had a fabulous last day together strolling through SoHo and Little Italy where I had my first post-transplant fresh pizza pie at Lombardi's: the first pizzeria in America. We found it to be incredible and worth the effort of having them take all the food safety precautions I require (i.e. don't slice the pizza with the rarely washed pizza cutter).

I'm having a sleepover with my college roomie, Frankie, tonight who is here in the city on business. I'll get to escape to her swanky hotel suite just two blocks away from The Lodge. Tomorrow my mama comes in for caregiver/girly time for the next 10 days. Hopefully I'll be heading back to Connecticut with her when she leaves ... .

I am feeling much, much better. Stomach is good. Back aches are faded. Chest fullness is reduced. I'm walking and exploring a lot (still donning my mask and gloves). I'm sleeping (mostly) through the night. I'm feeling fully in my body again. Perfect health is on its way. I am so grateful for how far I've come. It's quite unbelievable.

Big Red

Big Red

A crab on a platter. Need I say more?

8x10 acrylic on gallery wrapped canvas.

No Longer Available

Flaming Orange

Flaming Orange

Funny how pretty and bold an old orange pumpkin can bring a smile.

How fun to paint. 

5x7 Acrylic on canvas panel

Paypal available

A drive up the coast of California....

We have had a cold and foggy summer here on the coast of Northern California, but doesn't it make for beautiful lighting?

 

Blues and greys that bring quiet thoughts......

Kayaks waiting to be taken for a ride....

A lone traveler....solitude....

A chair calling for reflection....

aloneness......

A beautiful contrast for where we will be next week.......

Back to a turquoise world of Hawaii.....

Sunkist Jewels

Sunkist Jewels

This bunch of grapes just seemed to scream paint me.

Plump and juicy sunkist jewels.

5x7 acrylic on canvas panel.

Paypal available

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.

At least in Sloan-Kettering's transplant protocol, it is not recommended to pull an allo transplant patient off of his or her immunosuppressants until at least 60 days after the stem cell transplant is performed. The first two months are required to give the donor immune system time to mature and settle in and also for my body to get stronger and used to the new cells inside of it. We've been in the introductory phase: testing each other out. The Tacrolimus and Sirolimus ensure that my new immune system stays chill until it's ready to fully integrate.

As of last week we started making some moves. I was taken off Pozaconazole, my anti-fungal med (the chalky liquid one I was taking three times a day). As expected, because of how this interacts with the Tacrolimus I've actually had to raise the amount of that drug that I take. That should level out by my next bloodwork levels check on Tuesday.

Tomorrow is PET Scan day. On a positive note, I've only had six days to freak out about it and what it reveals. However during that time, it’s been all I’ve thought about. I have tried to make mental plans for dealing with whatever is going inside of me, but that is pretty much impossible. There are just too many unknowns and too many possible scenarios to comprehend.

In the simplest terms, the PET Scan results will help to determine how quickly Dr. Sauter tapers me off of the Tacrolimus and Sirolumus altogether. If there is any sign of cancer progression then we need to taper more drastically so as to allow my newly built immune system to go after it. A fast taper means more risk for graft vs. host disease. The preferable approach is a slow taper to ease my sister’s immune system in, but we can only do a slow taper off the meds if I am still cancer-free.

It may be obvious that this holding pattern is extremely difficult to sit in. A lot is riding on what tomorrow’s scan reveals. I’ll find out the results at clinic on Tuesday.

A fellow refractory Hodgkin’s Disease warrior – someone that I deeply admire and draw inspiration from – recently wrote about what it’s like for cancer patients in the days before and after a scan. Bekah puts it so clearly, eloquently and honestly in a recent blog entry. She frustratingly didn’t get the news she was hoping for after her scan. Please keep her in your heart as she continues the search for the key to her cure.

Some inspiration found on the label of my bottle of Honest Tea today:

“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” - Ambrose Redmoon

Rich Thick Sweetness

Rich Thick Sweetness

Who can ever taste honey and not be pleased?

Such rich thick sweetness.

Yum

7x5 acrylic canvas panel

Paypal available

Community Living

Most of the time I don’t want to wear a bra. Often I don’t like to wear pants. All of the time I prefer to be barefoot. But none of these indulgences falls under the “acceptable” umbrella at The Lodge.

My neighbors at home probably don’t appreciate it – as sometimes I forget that our house windows see both in and out – but I miss the freedom of eating a bowl of cereal in my undies – call me crazy.

I’m very tired of rules and more tired of other people breaking them. No one wants their first sight of the day to be a grown, barefoot man walking his germy feets on our kitchen floor first thing in the morning. I’ve got to keep my pants on. So should everyone else. Plus, my intestines are still too fragile to swallow that vision.

We share one kitchen with the tenants of 12 other apartments on our floor. That is 24 people. There are bound to be frustrations over fruit fly invasions, eggshells clogging the sink drain, the unidentifiable stickiness on the cafeteria-like tables, the dishwasher, which it seems the same people are always tasked with running or emptying out – or the kicker – when someone throws out our food. I thought Craig was going to pop a blood vessel over our missing frozen Basmati rice. I popped a few over someone smearing the bacteria infested sponge all over the eating tables.

As hard as ACS may try with laminated rule reminders everywhere, it’s the nature of the beast: the beast that is community living and human nature at its best. Everyone’s idea of clean is different, as is his or her idea of tact. There are the people that take care of everything (request more dishwashing soap, paper towels, etc.) and those who wait for everyone else to do it. It’s like being back in college again; there are always those couple of people that you want to avoid a conversation with by taking the long route to class. I’ll be honest. If I hear certain voices in the kitchen, I’ll let my stomach grumble for another 20 minutes to wait for the luxury of a quiet meal. Understandably so, there is no eating allowed in the rooms. This means anytime I want even a snack, I have to put my pants on and at least cover the fact that I’m not wearing a bra and trek down to the kitchen to eat a damn cookie.

And when I’m eating my damn cookie, I just want to eat my damn cookie. I don’t want to talk about my diagnosis, my prognosis, my current eating or pooping habits. One night while Craig and I were eating pizza, a new guy came in and pulled up a chair to our table. After filling in yet another person on why I am here, he says: “Wow, you had an allo transplant? And you’re still here? Everyone I know that had an allo is dead. I’m so f*&^%ing afraid to get one.” I done near choked on my mozzarella-laden artichoke. As much courage as it took to respond to that one, my biggest pet peeve is when people ask me my cancer diagnosis before my name. I bite down on my tongue so much I’m surprised it’s still in tact.

I try to be mean sometimes but then my heart melts for the new people who are scared, lonely, confused, disoriented, and have no one else to talk to. So I kvetch with them a little while trying to make it clear that negative energy is not allowed around me. However, that is difficult to accomplish when I have no space but a hotel room to escape to and holing up in there is not good for my health either. It’s coming up on two months of living here – with a month in a hospital bubble before that, so I realize I’ve become jaded and very impatient. I’m not proud of it, but I admit it and I work on my tolerance and keeping my frustrations properly channeled as much as is possible. Sometimes that is just not doable and I want to talk to no one for fear that I will punch someone in the nose and get myself committed. Some days I don’t even want to be around myself.

Then there are the amazing people that keep me going in my fight and whose company I thoroughly look forward to every day. The people that I want to hug, not punch. I’ve grown close with many and worry about them more than myself. I’ve seen many patients and caregivers rotate in and out of here. I worry when the rice cooker in our kitchen hasn’t been turned on, because that means the Cambodian man’s son is not doing well and he is at the hospital with him. I get worried when I don’t see my fellow transplant recoverers out on the terrace all day: that often means they’ve been thrown back in as an inpatient again for some kind of infection. I’ve seen people packed up to go home thinking they are done, only to see them come back weeks later with the sad news that their treatment didn’t work and that they need more.

Watching people recover and regress from illness in very close proximity can be both an inspiring and a difficult reality to watch. There is not much privacy here. When someone is having a painful day curled up on the couch of the shared living areas, it’s not easy to hide nor to know what to say. I find that I put up walls because some days I just can’t bear to hear another sad story about what someone’s been through. I can hardly process my own trauma and it’s selfish and sobering to hear some of the unbelievable stories of others. Or, to hear the unbelievable ways that others make their situations so much worse by how they focus on what seems to me to be the very worst things. But who am I to judge? I am not walking in their shoes. It doesn’t mean I’m not grateful that I’m not, however. I just need to let them walk their own paths.

I was in the elevator with a woman and her daughter carrying several packed bags. I had never crossed paths with her before. She looked at me and rejoiced: “We’re going home – back to Florida, finally!” She was all tanned and done up with coral lipstick and pearls dotting her neck. “I had surgery and was in the hospital for nine days. It was awful,” she continued. “We are so ready to be out of here.”

I wanted to say: “F&^% you. I was in hospital isolation for 27 days. I’ve been here for another 30 and have possibly another 60 days to go. Kiss my saggy, boney ass.” But that wouldn’t be appropriate, and how could I rain on her parade with my sob story? Hearing that tale will shut anyone up. I’m not in the business of sucking the air out of people’s balloons by comparing their cancer stories to mine: it’s not about comparison. Everyone’s cancer journey sucks in its own way. Instead, I smiled and said how happy I was for her, because I was. How can you not be happy for someone else’s good news? But there is that tinge of jealousy that exists and a little of that unanswerable question: Why can’t I be fixed and on with my life after a little surgical procedure?

What I’ve learned from being in the thick of this, and from talking to others about this conundrum, is that if people are whiners, complainers, elitist, or ungrateful and privileged in the real world, then that’s only going to be compounded and expounded when they are sick and in a less than desirable situation. If people are kind and compassionate in real life, then they will become angels on Earth during this process. There is much to be learned from people on both sides of the coin. Having cancer doesn’t make you a nice person nor does it give anyone the right to be mean: it brings out the best and the worst in all of us. All I can hope is that for me it's the former – at least the majority of the time.