Among The Grass by Angela Sullivan

 

Among The Grass by Angela Sullivan

An original painting of the cutest little birdie.

6x6 gallery wrapped canvas.

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A Basket Full by Angela Sullivan

 

A Basket Full by Angela Sullivan

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Eggert by Angela Sullivan

 

Eggert by Angela Sullivan

An original oil painting by me of course.

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JL

A Bowl of The Best by Angela Sullivan

A Bowl of The Best by Angela Sullivan

An original oil painting on gallery wrapped canvas. 

JL

Mr Bunny by Angela Sullivan

 

Mr Bunny by Angela Sullivan

Yep! Painted just because it is spring and Easter season....

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Ant Life Grand by Angela Sullivan

Ant Life Grand

6x6 oil on gallery wrapped canvas

I Think I Want A Drink of Angela Sullivan

 

I Think I Want A Drink of Angela Sullivan

7x5 oil on canvas panel

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Light as a Feather

When at its peak, my pain can be blinding and completely arresting. Toradol, a high-dose Aleve-type drug, has been the only thing that holds it back, some, and even then my pain remains at a 5 on the scale. When each dose wears off, it comes roaring back in at an 11 or 12, waking me up at night.

The pain is still stemming from this one very pinpointed spot on my left shoulder blade sending daggers out in every direction from its center point.  Its prevalence has forced us to have to shift treatment gears. The pain is too great for me to risk going onto a clinical trial of another novel therapy that may not do anything. If it truly is the cancer causing this pain, it's only going to get worse if we can't stop the growth. 

Despite how difficult it will likely be on my body, we need to tap back into traditional chemotherapy in hopes that it will be just as difficult on the lymphoma and be able to shrink things down again. Right now, it’s more important for me to be on the Prednisone to help soften some of the pain by reducing some of the inflammation rather than tapering off of it to try to get on a trial with very little data behind it. I guess this is the emergency plan, which leaves me real unsettled.

I’ll still have a lymph node biopsied on Thursday. If that shows something other than HL, then obviously everything will change. I am holding out hope that it did morph into something else, as long as it’s something that is highly treatable/curable because that would open up a whole new medicine cabinet. I’m deathly afraid that it could reveal itself as a deadly, incurable cancer, one of those ones that was threatened to me on all of those Informed Consent packets I’ve signed that detail how chemotherapy drugs can leave you at risk for future cancers.

If it is still HL, as most everyone suspects, then I’m likely going to go onto two oral chemotherapy drugs – two that I was on last April as well. I did not handle them well then. I’m not sure what’s going to happen this time around. I’m polling around to my other doctors as well, but I know that my options are very few.

There have been some rough nights, and as I said, the pain can be so blinding that I feel desperation to do anything to make it stop. Last night, from the quiet of our bed I put it out there to the universe that I needed some kind of sign to let me know that it was worth going through this. Through tears, in a whisper, I asked for some kind of tangible sign that if I pushed through and endured this difficult time, let the harsh chemo do what it had to do, that it would be worth it. I wanted to know that if I continued to move forward that it would all be so worth it in the end.

This morning I woke up with The Beatles song “Blackbird” playing over and over in my head. It’s one of my absolute favorite songs. I think the melody is so innocent and beautiful and I love the idea of taking broken wings and learning to fly, as I feel that’s so much a metaphor for much of what I’ve been through: constantly adapting and relearning. It makes me believe that my moment to be free will still arrive.

Earlier this week my mother had brought over a beautiful porcelain box of her mother’s (my grandmother’s) jewelry. This afternoon I cut the tape that secured its top and dug through some beautiful chains and rings and fun earrings. My Gramma loved jewelry, dressing up, makeup, perfume, all the girly things in life. At the bottom was a gold pin in the shape of a feather. I held it in my hand and burst into tears immediately knowing that that was the sign I had asked for.

Feathers have been a very important symbol to me since my allo transplant, because though damaged, I felt that the experience gave me a new set of feathered wings with which to learn to fly again. I am still learning. Sometimes the wings are very heavy, but when they are light, all is beautiful. I love how delicate feathers are and how they symbolize flight ­– the ultimate freedom, lifting high above the pain and the fear.

See more of Kara's work at versejewelry.com

I wear a charm necklace that has three engraved circles on it, which a jeweler in New York City crafted for me at an outdoor market. I watched her tap each letter into the soft silver. One reads “peace;” one reads “strength;” and the third reads “life.” For a year I wore only two on the chain – peace and strength, the two words that I would always go to to get me through the tough times, drawing on my inner strength and striving to find peace in my body, my head, my life. I wore them on a thick silver chain, a long one that allowed the charms to fall at my heart, all through the allo transplant process. It wasn’t until I got through the first anniversary of my transplant that I removed the third circle from the box and added “life” to my necklace. It was then that it felt right. I had had a matching necklace with just a single small circle that reads “life” made, which I gave to my sister on the day her stem cells were infused into my body as a reminder to us both that she gave me a second chance at life.

I talk about my necklace because when I asked my very talented, very dear childhood friend who is a jewelry designer to add the “life” charm, I also asked her to add the sterling silver feather pendant that she often works with as I’m so drawn to feathers. She also added a faceted crystal quartz briolette and sent me all the information on the many things it symbolizes, including: “A power place from where the magic of the human mind can launch its dream creations into the universal machine so they can become a reality.” We both liked that one.

If one day I’m ever cleared to be able to, I’d love to get a tattoo of a feather on my inner left arm as a reminder of what I’ve risen above and that I still have wings to fly.

So, yes, seeing that gold feather pin was a reminder of all of that and more. My mom said that when she saw the feather in my Gramma's jewelry box, she was surprised to see it there and knew it should go to me as she divvied up the jewelry she left between my sister and me. I have no doubt that that was the sign that I was asking for. This time it was my Gram who answered. My Gram who we lost two years ago, also to cancer, while I was in the thick of my transplant recovery. Still too immuno-compromised and weak for travel, confined to New York City, I was unable to attend her funeral. I miss her all the time and this little sign that she sent helps me to know that she’s still looking out for me.

I’ve only once before asked for a sign. It was when I had to fly back to Houston for a PET Scan to see if the clinical trial I had been participating in had worked and if it would finally be time for transplant. I remember falling to my knees crying and saying that I needed something to give me the strength to get myself to Texas and be able to absorb whatever news I would get there. The morning of my flight I awoke to a tall bloom of a white peace lily poking out of a houseplant in our living room – a houseplant that hadn’t flowered in years. In fact, the plant was mailed to me by a friend to cheer me up when my paternal grandfather, my Peppe, had died in 2008. Well, there it was clear as day. That time it was my Peppe answering my call for a sign – in the form of a sudden six-inch stem and full white lily bloom jetting out over the plant that was otherwise only green leaves.

I had no question then and no question now. Those that we love never fully leave us. It’s true that they live within us and are there to guide us. I’d rather I could have them back so that I could hug them and listen to them in person, but it brings me some peace to know that their presence is still alive.

Tell me I’m a little woo-woo, a little out there. Tell me the ‘roids have gone to my head. Tell me the lack of sleep has me fixing delusions. Maybe it’s all partially true, but I’ve always been a dreamer, a creative, a lover of signs and symbols, kismet and simpatico. Seeing that feather brought back some semblance of hope just when my own fighting flame was starting to burn out. 

Shrimpy by Angela Sullivan

Shrimpy by Angela Sullivan

 Still life painting oil on 8x8 canvas panel

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Waiting For A Call by Angela Sullivan

 

Waiting For A Call by Angela Sullivan

Not your house on a hill but certainly a nice place to be. I named this because of the telephone lines

going in. I just figured that surely someone is waiting for a call.

16x20 oil on gallery wrapped canvas

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Cheese Please by Angela Sullivan

 

Cheese Please

Wow! This was a blast to paint. Of course the original was gray but I can paint him any

color I want to right? Hope you like.....7x5 oil on canvas panel.

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Scattered Blessings by Angela Sullivan

Scattered Blessings by Angela Sullivan

I had so much fun painting this one. I received a new tube of paint from winsor & newton

and am really enjoying it. Thanks for looking.

10x8 oil on gallery wrapped canvas

$100

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Looking Straight Ahead by Angela Sullivan

 

Looking Straight Ahead

A sheep. I have always been intrigued by sheep or any farm animals that I know of. They are so unique. I love their look and the smell of fresh hay. I have never lived on a farm and have only visited one once or twice but I still remember. I am kinda afraid of them,horses,cows,sheep,goats and yes even chickens but still I like them. I painted this sheep just because and I must say that it feels pretty good. 7x5 oil on canvas panel

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Phasing out the 'Roids

Today's Starbucks nest. 

Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  


[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

Here Kitty Kitty by Angela Sullivan

 

Here Kitty Kitty

7x5 oil on canvas panel. I am really enjoying these animals. They are so much fun to paint.

For sale or auction at my DPW gallery just follow the link to purchase via Pay Pal.

In It To Win It by Angela Sullivan

 

In It To Win It

I have heard this saying and just wanted to use it.

5x7 oil on canvas panel.  For sale or auction at my DPW auction just follow the link to pay via Pay Pal.

And Fruit by Angela Sullivan

And Fruit by Angela Sullivan

8x8 oil painting on canvas panel.

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Indian Paintbrush by Angela Sullivan

Indian Paintbrush by Angela Sullivan

Still life painting oil on 8x8 canvas panel

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Things That Matter by Angela Sullivan

Things That Matter by Angela Sullivan

Original oil painting on 8x8 canvas panel.

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There's A Ladybug In My Cup by Angela Sullivan

There's A Ladybug In My Cup by Angela Sullivan

My daughter bought me a coffee cup with a lady bug painted inside. I love it and

drink out of it often.

7x5 oil on canvas panel.

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Mixed Results

No better way to start the day!

My late friend Steve (ugh, “late” sounds so formal and awkward). Try again: My very good friend, Steve, that died from complications from this f’in disease and that I miss tremendously every day, once told me that at some point, news just becomes news.

News is what I got yesterday after having my first PET Scan to assess the effectiveness of this Bendamustine/Brentuximab Vedotin clinical trial. It’s not necessarily really good. It’s not necessarily really bad. It’s just news that I now have to deal with. This news directly affects my life, so I kind of have to pay attention, as little as I want to pick up and recalculate.

I am coming off of this trial. It is not working for me. Another treatment that just couldn’t get the job done. It’s getting frustrating and exhausting for sure. I desperately miss stability.

Wednesday was a long, long day. My mom started at 5 a.m., driving to pick me up at 6:45 a.m. to start the trek into the city. That’s a devoted mama. I had to have my scan at the hospital way uptown in the Bronx. It’s very old hat, but it’s still not fun. I had to get both a PET and a CT Scan to be able to best analyze both my bones and my lymph nodes, respectively. That means I had to lay in two machines, drink a full bottle of “banana smoothie”-flavored barium sulfate, be injected with the PET Scan radioactive diodes, and then be injected with contrast for the CT Scan, which goes in while you’re in the machine and makes your whole body so hot that you feel as if you’ve wet your pants. This is all after not eating since a midnight snack the night before.

We then had to travel to midtown Manhattan where my doctor’s clinic is and we would go over the results and formulate a plan. Waiting for those types of appointments to start, especially, is hell. Waiting for 2.5 hours is even hotter hell.

I fell asleep in the waiting room, so deep asleep that I let out a fart and then started laughing. All those contrast chemicals make me gassy! My mom rolled her eyes and tried to cover it up and not start laughing hysterically herself. No doubt the other people in the room heard. I was too tired to care. Then, we both fell asleep intermittently in the exam room where we waited more. It was so hot in there and the walls began closing in after a while. We played some word games on our phones. I took walks to the bathroom to make sure to make my presence known.

After two hours we were punch drunk with exhaustion and anxiety about what news the doc would bring in. It just got silly and at my mom’s request I started doing interpretive dances to express how I felt at that moment. They mostly consisted of lyrical hand motions that utilized the middle finger and classic movements to denote “f you’s” like the hand sweeping from the base of the neck out at the chin level or falling to my knees, arms making a circular wave until they rested right forearm under left forearm parallel to the floor, right hand making a fist at the world. Classic swearing-through-hand-motions.

Finally, we saw the doctor and his team after they reviewed my scan with the radiologist. The results are “mixed.” Dr. O is as frustrated as we are in that he wants so badly for something to work for me for more than two seconds in a seriously effective way. The disease in the bony areas has either resolved or reduced everywhere, including my pelvis, which was pretty jam-packed. However, there is new growth in the lymph nodes of my left neck/collar bone area.

I am not surprised by this. I have been pointing out swollen, palpable nodes in that area for six weeks now. They popped up just after having my first infusion of this. We were hopeful, however, that it was instead cell death causing fluid build-up and inflammation. I knew otherwise. I’ve palpated my lymph nodes for a long time now. Now it is confirmed by the way it was showing on the scan that it is in fact disease.

It is curious that disease would grow like that in one area even though I was receiving two drugs very well studied to work against HL, as proven by how they worked against the bone disease. We’re tossing around the idea that maybe the disease has morphed into another type of lymphoma and I could be dealing with something completely different than HL in this lymph node area. Dr. O doesn’t think it’s likely, but does think that it’s plausible. He’s seen it before.

I’m contemplating having the area biopsied so that we can know for certain what we’re dealing with. I need to weigh the risks of that with the benefits and realize that it’ll delay my treatment some as well. My gut right now is telling me we should check it out, especially since these lymph nodes are so easily accessible. I have not had a biopsy to look closely at the disease tissue since November of 2011 when I relapsed after my allo transplant. I have some more thinking and opinion gathering to do surrounding this option. If I am dealing with a different type of lymphoma, that will open up a whole new door of treatment options to better target it. If it is still HL, then at least we’ll know that we’re focused on the right treatments.

Regardless, my number one task is to try again to wean off of the Prednisone completely. If my body can do that, then it opens back up the trial of the NAE inhibitor being hosted at Columbia, which seems like a next best option for me. I was about to start it before this trial, but participants are not allowed to be on any steroid while enrolled. When I tried to come off, shit went crazy. We’re hoping that with less disease in my bones, I’ll have less pain without the steroid. I drop by half today.

There are a couple of other clinical trial options at Columbia as well. Traditional chemotherapy is off the table for me. My bone marrow is too sensitive, as proven by how anemic I got and how low my platelets dropped on this trial, which is only one-part, very low-dose chemo. The short-term gains are not worth the side effects for me at this point. Plus, the well is fairly dry. I’ve tried most all chemo drugs traditionally used against Hodgkin’s, except some very harsh regimens that we’ll save for emergencies only.

I’ll delve into more research this weekend to see what else is happening out there in the lymphoma world and need to make some decisions by early next week. I’m gearing up – again – for another new chapter and everything that that brings. I’d rather just sleep. 

A Bright Spot In My Day by Angela Sullivan

A Bright Spot In My Day by Angela Sullivan

I bought a jar of fruit and knew right off that I would be painting

that jar. Of course I changed it a bit but kept the basic shape.

6x6 oil o canvas panel.

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Red Beauty by Angela Sullivan

Red Beauty by Angela Sullivan

The photo is not as crisp as I would like. As usual the painting is much better.

6x6 oil on canvas panel.

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Transformation Found!

To any of you who have been following my blog, you know that I have spoken and posted photos of the Monarch butterfly bush on our road, often.  It never ceases to fascinate me and when the grandkids come, it is a must visit spot. However, as I have shared....over the past couple of years, I just couldn't find the cocoons.  I found the caterpillars and I saw the butterflies....but it was a mystery as to where the chrysalises were.  They certainly were no where that I could see and I searched high and low all over the bush.

So today I was talking to the gardener and sharing my dilemma and he smiled and said "come with me"....up the driveway we walked and under the porch edge we looked....about 50 feet away....and there they were!  Hanging like precious jewels!  Some opened and some awaiting the full transformation. That's a long long way for a caterpillar to travel, but I guess we all would do anything for the promise of transformation.

This well eaten bush is where it begins.  The butterfly drops the eggs, the eggs hatch and the tiny caterpillar eats the leaves and grows and grows.....and then drops from the bush down to the road and slowly, oh so slowly, inches up the driveway, through the plants, up the wall and attaches itself to the overhang of the porch. 

There the jewel hangs...while within...magic is happening.  From a grounded caterpillar to a the flitting, flying, soaring miracle of a butterfly.  Then the butterfly somehow knows to return to the bush and lay her eggs....and the cycle continues.  Wow!  The cycle of life...just down the road....on a little bush in paradise.

A Bunch For You by Angela Sullivan

 

A Bunch For You by Angela Sullivan

This is actually a redo. I painted it an was never quite

satisfied with it. 

20x16 oil on gallery wrapped canvas

$240

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Is It Just Semantics?

Lives come in every shape and color and that's
what makes them beautiful. 

I was talking with someone in the grocery store parking lot that I’ve never met, but who knew of my nearly four years of living with cancer, and said he admired me because I keep going. He told me that his brother “gave up.” The comment really irked me. Gave up? What does that even mean? Who are we to judge other’s decisions on what treatments they do or do not want to pursue? Or how they react to their diagnosis and choose to manage their own, very personal body and disease?

We all have the right to set up what is a desirable way to live our lives in the way that works best for us – with or without disease – as long as it is respectful of those among us. Our life choices should not be dictated by societal pressures or judged by anyone – even ourselves. We cancer patients have enough pressure: don’t put us on pedestals or act like we’re your project to “fix.” We’re just regular people doing what we have to do to get through the tough times and relish the good ones. Let us choose our own path to follow. Sure, guidance and love and support are so much appreciated, but judgment, unsolicited questioning and force are not.

Just because you have an aunt that survived breast cancer seemingly effortlessly does not mean that the road will necessarily be as easy for your colleague, so don’t equate their journeys. Just because your college roommate died of multiple myeloma doesn’t mean that others won’t live a long life of remission. It’s just not that cut and dry.

Cancer is such a broad, general term. What works for one cancer patient may be detrimental to another living with the disease. We rely on our own understandings and experiences in an attempt to relate, but it’s important to keep in mind that everyone’s journey is uniquely different. According to the Cancer Research Institute, “cancer” refers to the more than 200 different diseases characterized by the uncontrolled growth of cells that invade and damage the body’s normal tissues.

As specific as Hodgkin Lymphoma – the blood cancer of the immune system that I live with – might sound, there are two World Health Organization recognized subtypes. Under the “classic” subtype, there are four more sub-sub types. Then, treatment and disease behavior is dependent on what stage (I, II, III, IV, a or b) you were diagnosed at, whether your tumors are positive for certain proteins like CD30, CD20, or whether they show positive for the EBV (mono) virus and a slew of other factors. Never mind the uncategorizable mutations and the unknown reasons why some strains of Hodgkin Lymphoma are wildly aggressive and refractory, while many are forever cured with frontline treatment.

This is why the science of cancer treatment is moving toward individualized medicine based on specific expressions at the cellular and genetic level. Take two people the same age, the same disease diagnosis, the same treatment plans, and the side effects and outcomes will inevitably be very different. I know this because I see it all the time as I meet others with my same diagnosis but very different treatment and disease behavior paths.

Just because one person supposedly cured their cancer by eating Echinacea root doesn’t mean it will happen for others. And that is not any of our faults. It’s wonderful when people find their cures and can certainly be frustrating when others can’t, but knowing that everyone’s experience is different keeps that glimmer of hope shining that the perfect treatment – or “key” as my husband coined – is out there for everyone. It just takes some experimenting.

Let’s eliminate the assumptions that because someone’s disease isn’t responsive to treatment or keeps coming back after glimpses of remissions means that they are doing something wrong. That is simply not the case and it is detrimental for outsiders to think that, and even more so for patients themselves to beat themselves up over it. Sometimes it is an organic process that we just have no damn control over. We can do our best to complement the treatments in myriad ways by finding a healthy life plan that works for us, but must remember that the existence of cancer in our bodies doesn’t mean a failure on our part.

A countless amount of strangers have said the oddest things to me when they find out that I have cancer. Did you change your diet? Are you religious? As if I must be a fast-food eating, God-hating heathen to be carrying around this disease. What an awful assumption to make about someone. I’m not sure why finding out I have a disease can make people feel they have open reign to tell me how and why I got this way before they even ask my name.

Yes, I live a healthy lifestyle, but you know what? Sometimes I go a whole month without juicing vegetables up for a green juice, and every once in a while I do enjoy a Classic Coca-Cola. Its bubbles make me smile. Is that what is preventing my cancer from disappearing? I don’t think so. I do my absolute best to avoid the foods that are known to give cancer and gorge on the ones that are supposed to kill it, but I am not so strict that if I see a melty chocolate chip cookie fresh out of a bakery oven that I’m going to deny myself that. I’m going to eat the fucking cookie and I’m going to enjoy it because life is too short. If I’m too tired to go to yoga class, I’m not going to go. If someone wants to gasp at that choice then so be it. Power to those who are very strict with their eating and exercising habits. If it works for them then that is fantastic, but again, we all take our individual paths and no one should judge what helps someone else heal.

No, I don’t subscribe to organized religion. I find spirituality and faith in nature, within myself, and everything around me. Is that why I’ve been stricken? Because I haven’t regularly attended Catholic mass since middle school? If I just say my prescriptive prayers and sit in a pew every Sunday then I’ll be cured once I find their God? I’m not buying it and I don’t appreciate the raised eyebrows. I think those with deep faith and devotion to their religion is a beautiful thing. I respect and appreciate it and love that people find solace and strength in their faith. They should be allowed to practice that without judgment just like I should not be judged for finding my strength by digging my toes into beach sand or understanding my place in the world by taking in the majesty of a sunset. There is no need to force beliefs on another – and never a cause to blame a disease on what faith someone subscribes to.

For the most part, people have good intentions. I know this. They just want to be able to wrap something as messy and ugly as cancer in a pretty polka dotted box and tie it in a bright pink bow, put it away and be done with it. Take a pill. Say your prayers. Drink your milk. Pouf you will be cured. What’s your problem? The swift assumptions of false simplicity can really be exhausting.

While we’re at it, let’s give up the terminology that people who die from this disease (7.6 million people worldwide, every year, according to the Centers for Disease Control and Prevention) have “lost their battle with cancer.” When it’s referred to like this, it implies that cancer is the winner and the person is the loser. There are no winners and losers in this. People die from car crashes and overdoses, heart attacks and skiing accidents and we don’t refer to them as losing their battle with their opponent. It implies that the person did not do enough, that somehow they weren’t strong enough or smart enough to outlast and outwit the cancer and I’d venture to say that that is not the case. It’s disrespectful.

Maybe it’s just semantics, but we should be more sensitive to how we speak about and to those dancing with cancer between life and death. If you want to learn more about what it’s like to be a cancer patient or how to be a better support to a loved one who is, leave the stereotypes and the judgments aside and just listen. Be tactful and respectful and consider the time and place and I’ll want to listen to your ideas and experiences, too. Be receptive of the vibes you’re getting back. I didn’t want to hear ideas at 1am when a nurse brought me to tears in confusion over my IV medication and when she caught me crying, asked me if I was religious. Unsatisfied with my answer that I am a spiritual person, she started in on how I need to rely on God to get me out of this. I was incredibly sleep-deprived and needed an Ambien, not a preacher at that moment.

I am not saying that we shouldn’t share with each other our stories and tactics, songs, books, foods, places that have helped us heal. I certainly know that I would not have gotten this far without the outpouring of suggestions about things like anti-inflammatory foods, yoga, juicing, clinical trials, cutting-edge drugs, Reiki, talk therapy, meditation, doctors, and countless other coping mechanisms that are now integral parts of my life. I am grateful to the people who are tactful enough to reach out and make these suggestions to me not in a way that is know-it-all, brash, or judgmental, but in a manner that is comfortable and appropriate. 

Let’s turn up the love and respect and turn down the need to pounce with our own solutions to problems that may not even exist. The choices someone makes may be drastically different from how you’d approach a situation, but there is no one right way. Aren’t we all just looking to survive and thrive in this wild and beautiful life?  Let’s lay off and give each other the space and freedom to do that in whatever way we need to, minus all the pressure and expectations.

At The Auction

 

At The Auction 

7x5 oil on canvas panel

                             The Monochromatic Challenge 

Quite challenging I might say

$60

To purchase visit my 

Gallery

To view more of my paintings visit my

Website  
JL 

 

Orange You Just Special by Angela Sullivan

 Orange You Just Special

I never know when I get up in the morning what I will be painting that day. 

Today I surprised myself by painting this little Clementine.

7x5 oil on canvas panel.

For sale or auction at my DPW gallery just follow the link to purchase via Pay Pal.

Red-Ish by Angela Sullivan

 

Red-Ish

                         Radish's are oh so nice. They pack a crunch and are sometimes a little hot.

                 Gotta love them though. They too are good for you. 

5x7 oil on canvas panel. For sale or auction at my DPW just follow the link to purchase via Pay Pal.

I have two new online classes up and ready for signing up.  The first one is in creating a Faerie Throne.  They are so fun and easy to make.  As you can see by the photos, I just couldn't stop.  Only $20!  Find out more here: http://www.aforartistic.com/Faerie-Throne.html

If you haven't taken an online class before, this is a great one to begin with.  I love teaching online, and I myself take lots of classes this way.  It's so convenient and can work into my own timing and schedule.  And no travel costs!

The second class ( which actually comes up first, at the end of this month ) is on creating two different rabbits with the use of a gourd, apoxie sculpt, buttons and a touch of pussy willow.  For more information, click here: http://www.aforartistic.com/whimsical-wabbit.html

I'd love to see you in class.  If you do sign up, let me know that you heard about it on my blog.  I'd love to create with you!