Friday, December 28, 2012

"Winter is Coming"


It's the other shoe. 

Somewhere in the back of my mind I have a lingering fear. Some might call it silly or irrational, but to me it's based on real world experience. I have a good life. I have had some very bad things happen in it, but I've always dealt with the given situation, moved on and been happy again. I've developed faith in myself. What I've also developed is a little paranoia. When I am happy, REALLY happy, and things are going great a little part of me starts poking a finger at my brain, "Hey…hey…things are going a…little…too...well. Something is gonna screw it up." I can slap the thoughts back, but never quiet them completely. 

Let's do a short year in review…
I've had some great projects at work this year that were creative and challenging. They involved design, photography and writing. I won some awards with my fine art paintings as well as sold a few. I was honored to be asked to create a painting to be auctioned for a great cause. Made progress on renovating the rest of the house. It's the holiday season! I find myself just staring at the Christmas tree, decorated mantle, roaring fire, cats and dogs sprawled out on the furniture and floor and now with Ed, my house feels like a home again…full of love and we were married on December 21st! I think this sounds pretty darn good. 

"Winter is coming." 

I've been watching "Game of Thrones" and THAT is a great line. Foreboding…that vague feeling that something lies just out of reach. You can only see glimpses of it in your peripheral vision. Something…bad. So when my infusions didn't seem to be making me feel quite as good as usual, the finger got more persistent. When the stomach issues got a bit worse than usual, I started asking for tests. I get regular CBC bloodwork with every infusion and all have been normal, but additional bloodwork also turned up nothing. My primary doctor was ready to kick me back to the hematologist, which didn't make sense to me. My symptoms wouldn't really be in his realm of expertise, so I asked for imaging studies. I suspected an ovarian cyst and made a good argument for it. Actually my argument was that since the few symptoms that exist for Ovarian Cancer mimic the normal digestive issues I already have, that it would be best to definitively rule out the possibility of cancer. I wasn't even worried at this point; the rational side of me anyway. I just wanted to confirm that a cyst is all it was. I just wanted to quiet that damn nagging finger. Ultrasound approved.

I was right. I have a large ovarian cyst. 
The finger was also right. The cyst wasn't the real problem. The tumor is.

I find this out the day after my birthday. Same day I had the test, but it's also 3:00pm the afternoon before Thanksgiving. The ONLY information I received is that I have a "rather large" uterine tumor. I see the email arrive with "Test Results" as the subject as I am sitting on a kitchen stool in front of the stove perusing the internet for a good green bean recipe to cook. I need more information. I don't do well without detailed information and everyone and everything is closing down until Monday. Ed does his best to quiet my fears, but I'm a worst case scenario kind of planner. I am compelled to gather as much medical information as I can even in the absence of knowing for sure what we are dealing with, but the phrasing "rather large" isn't terribly comforting. 

I began alternating between cooking for Thanksgiving and reading about fibroids and their treatment. Baked corn and hormonal therapy. Cornbread dressing and wait-and-see. Mashed potatoes and surgery. Monday finally arrives. I call my doctor's office at the infusion center to get a recommendation for a good gynecologist. The first place I call won't see me until March. MARCH! I'm having distressing symptoms NOW! I have vacation plans I can't cancel in March and was hoping to be treated and recovered by then. I leave a message at the second one on the list and they never call me back. I'm on my own now. I find another clinic in Ft. Worth with a satellite office in Granbury. Two of the doctors had good patient reviews online. One of the two had quite a few. People complained about the office staff, but said this doctor was worth the bother. I called and got an appointment for just a few days out. I also got a copy of the radiologist's report. My tumor is about the size of a small pear and attached to the outside of the uterus pressing against other organs and it was probably the reason most of my work pants and jeans had become uncomfortable to wear. Thank goodness for black yoga pants!

I get the standard medical information forms to fill out. List your surgeries, medications, illnesses, etc. Sigh, I'm going to have to explain my primary immune deficiency to yet another doctor. Most are unfamiliar with it. To my surprise, she has another patient with CVID. No explanation needed. I have a little more confidence now. We are going for surgery. Remove the uterus and keep the ovaries. Stable hormones should help prevent my body from going into an autoimmune tailspin. These types of muscle tissue tumors are 99% benign and removing the entire uterus prevents a recurrence, which is common. The surgery can also be done laparoscopically, so no large abdominal incision and faster healing. It's scheduled for later in January. As long as I can sit at my drawing table and paint during recovery, I'll be okay. I'll go crazy just sitting around and doing nothing for more than a day. New dog, Archie, may be getting a lot of clicker training lessons as well.  

It's still surgery and I'm a little scared, but this should be a cakewalk compared to what I've already been through. The timing with my infusion schedule is perfect. I get fresh, raring to go antibodies the day after surgery. I literally leave the surgery center and go straight to the infusion clinic. I'm hoping if I do have moderate pain or nausea from the anaesthesia, I can get some really nice IV meds at the clinic and I'll be monitored by the nursing staff there for most of the day. Very reassuring for me. 

The scenario could be a lot worse. This is a relatively minor blip that I can use to my advantage and hopefully get a couple paintings completed. Wish me a fast recovery.
I'm hoping it's more like the other slipper that fell down than a steel-toed shoe.

The Painting:
"Long Creek Winter"
Acrylic on Board
12" x 12"
Available for purchase

Wednesday, December 12, 2012

Eyes Wide Open

I have a lot on my mind. Life and death. Sickness and health. Want versus need. Chaos and balance. 

Several weeks ago at the infusion center a man walked up to me and said, "You don't know me, but Dr. Mandell suggested I should come find you." We hadn't met, but I did know him. I also knew that statistically, he should be dead. We had more things in common than having the same hematologist–the same man that we both credit for saving our lives. He also works in the motorcycle industry and is one of the few people to have said, oh I know Tucker Rocky, when I explained where I worked. Usually, I get a blank stare and am asked to repeat myself…"Tucker-what? Huh?" A few years ago, early in my treatments, I spotted an article or flyer, I don't remember which, on the bulletin board in the snack area at The Center for Cancer and Blood Disorders. This man was about to begin a motorcycle ride across the country. A diagnosis of impending death seems to have one of two effects on people. They either curl up in a ball and cease to function, an even earlier death, or they are spurred into doing the things they always wanted to, but probably never would have because there was always "still time." I liked his page on Facebook so I could follow along on the journey. He told me he did this ride for himself and to bring some awareness to his disease, Multiple Myeloma. With treatment, the survival rate is 3 to 4 years. He's passing 8 now (this is unheard of) and shows no signs of coming out of remission thanks to a stem cell transplant. He volunteers his time to council patients and their families or to just lend an ear as someone who has run through the gamut of emotions associated with a diagnosis that doesn't offer much hope. He is hope. Doing what he can for others, not just living for himself, knowing that the odds of long-term survival are not in his favor. Each day precious. I admire this.

I'm sitting at my drawing table and Ed remarks that I don't look like I'm enjoying myself. Is something wrong? It's not a simple yes or no answer. I don't know about other artists, but for me, painting is intense and it's tiring…mentally, and I love it…normally. 

Right now I'm frustrated. I haven't had time to paint on a regular basis and keep having to stop and start and stop and start a painting that I began months ago. I have virtual folder full of photographs of landscapes that I want to draw inspiration from for my 'grasses' series. It can be a little disheartening to see all the photos and realize what little I have accomplished. I want to have an entire show of nothing but grass-themed paintings. Life is interfering with my wants. The limits of Time weighing heavily. Like my new friend, I have come to view Time as limited. I wish it was tangible. I wish I could gather up armfuls of Time and squirrel them away for future use. Put Time in a bottle as the song goes. 

At least that's what I thought the main conflict was, but I'm realizing that it's also something deeper. Something more internally motivated. The daily routines and necessities of life are always going to battle for my attention and draw energy away from painting. This is not new. I have a day job. Thankfully one that I love that fuels my creativity, but can leave me mentally exhausted by the end of the work day and at times requires lots of overtime depending on the project at hand. My illnesses wax and wane in repetitive 3-week cycles corresponding to my treatment schedule and can leave me physically exhausted. Then there are life choices that I've made…tending my flower garden which brings me a different kind of creative joy and peace, the plethora of pets that I love dearly, and of course, Ed, who opened my heart again after loss. I want to pay time and attention to each one; each thing that I love. Finding balance is not easy. Again, this is not new. Why was I apparently making disgruntled faces as I painted? What is different, changed?

I had to define painting in my mind as not just a want, but a need. I've wondered at times if it's just a selfish pursuit on my part. If I stopped, I could spend more time with other things, the animals, the other people in my life. The last few months have told me that I would be miserable without my painting. Perhaps it is still selfish, but I need it to be happy. 

"Spring Blanket" is the piece that has been sporadically occupying my time. Just when I thought I was nearing completion, I found myself painting out entire flowers that suddenly became distracting and adding in more round puffs of seed heads. Bits of flower petals from the distractors left deliberately to peek through. I significantly darkened up the lower left side to tie in with the trees in the background. I found the seed heads echoed the colors in the background branches. I added sky blues into sections of the grasses. Layering in more and more color, but subtly, so it didn't compete with the vibrant reds of the blanket flowers. My brain was picking apart the design and trying to improve it. It just took me a while to realize it consciously. At first, all I knew was that I wasn't happy with the piece and consequently wasn't happy with me. 

I'm trying to seek a balance between the impressionism that I love and maintaining the realism I'm known for. I want my work to be…richer…good a word as any and I'm not where I want to be yet, but I believe I'm headed in a good direction. I no longer think twice about painting something out that I spent quite a bit of time on. I'm more ruthless in my editing. More critical. 

I want to keep growing. I NEED to keep growing and yet I also need to recognize life's current restrictions and limits. Some of you will say that the only limits are what you impose on yourself. The only limit is the sky itself. To me that's a nice fairy tale. Something you tell children until they hit the brick wall that is the real world. At that point, you either stand there paralyzed, figure a way to walk around it or blow the thing up (or a combination thereof). Some of us carry burdens that make it harder to move forward, but not impossible. In that sense, I guess I'm not as jaded as I sound. Some limits are insurmountable, though. Some we have no control over and must come to terms with that and not let them ruin our happiness.

So where does that leave me, the realist? Still spinning plates. Still seeking balance. Still fighting that damn painting. I don't have all the answers and am kinda glad that I don't. Life would be pretty boring if I did.

Note: I generally post in-progress photos of my paintings on my personal Facebook account. 
Friend me if you'd like to follow along. 

Friday, December 7, 2012

When did it become wrong to grieve?

Painting is a self-portrait acrylic on masonite

When did it become wrong to grieve?

Driving home yesterday I was singing along happily to Christmas carols when they were rudely interrupted by radio spots. I switched over to NPR to wait out the commercials and into the middle of a discussion about grief that hit pretty close to home. I found myself agreeing with what the psychiatrist was saying, but I quickly realized that the real point of the interview was something else. It wasn't simply a discussion of grief, but was actually about a proposal for an update to the "Diagnostic and Statistical Manual of Mental Disorders" considered the "bible" of mental illness classifications. Grief could soon be diagnosed as a mental disorder lumped in with major depression. I was speechless. I found this absurd.

Experiencing sadness for as little as 2 weeks could earn you a diagnosis and associated antidepressive medications. What's wrong with this? Where is my empathy? Do I want people to suffer unnecessarily?

Our society has become so detached from death that we are losing the ability to cope when we lose someone close to us. In the not so recent past the body would remain in the house until burial. Photos of the dead were lovingly taken and preserved. I think grieving is entirely NECESSARY and truncating that process with drugs or labeling the person as mentally ill will only delay or prolong the suffering. We are advocating hiding from our emotions rather than understanding and dealing with them directly. Not properly dealt with, the strong emotions that accompany losing a loved one will undoubtedly resurface in times of stress, maybe years later, or may permanently affect our ability to form and keep new relationships.

A diagnosis in two weeks, pfft! It took me 2 weeks until I could actually cry when Tom died. I was in a bizarre state of surreal disbelief, shock, until that point. Fully functional, but still processing what had happened. Everyone reacts differently to death and deals with it in their own time. There isn't a right or wrong timeframe. You should feel free to express your feelings and not fear they are abnormal. That they are the result of a mental illness. Grief serves a purpose. Sadness is natural and normal.

People who suffer from situational induced depression are not at any more risk of developing crippling clinical depression than the rest of the population. Though I do not have clinical depression, I do have experience with it and strong empathy for anyone suffering with it. Tom had dealt with depression most of his life. Drugs were the ONLY way to keep it at bay. Periodically he'd develop a tolerance and have to try something new. I saw what the depression was capable of in these brief periods of ramping off and onto new meds, but I didn't know its true power. Not yet.

I did not like his doctor and was trying to persuade Tom to switch to mine. The tipping point came when Tom developed another tolerance and instead of trying him on a different medication, the doctor declared that Tom was actually not suffering from depression, but needed to quit his job and find a new one. That the job was the real problem. He refused to prescribe more drugs. I watched my competent, confident husband descend into a sea of questioning self-doubt. Unable to make even the simplest of decisions. Falling so deep into an emotional hole that he could no longer see the light to find his way out. Thoughts of ending it creeping into his conscious mind. New drugs brought him out of it. In the past, he had questioned the drugs. Were they hiding the real Tom? Were they just a mask on the 'real' person? I countered with, "You have a chemical imbalance in your brain. The drugs allow you to be the real Tom." I truly believe this and I think the episode of being off them drove the point home.

So, I do strongly believe in treating depression with medications…if in fact what you have is a real and long-lasting illness. For the majority of people, grief isn't. Is it painful, torturous? Hell, yes! My only recently rebuilt world came crashing down around me. I felt lost and I felt the loss without medication to blunt the pain or dull the mind. I forced myself to face it and am glad I did. Talk to someone you trust; family, friends or a therapist. For me writing was a way to explore my emotions. Forcing myself to put them into concrete words also made me understand and accept them. I was able to learn from them and move on with my life.

We fear what we don't understand. Tell someone you have cancer and you are overwhelmed with support and empathy. Tell someone you have a mental illness and most people back away. The stigma attached to it is deeply ingrained and completely unenlightened. In both cases something has gone wrong in the body and treatment is necessary. Attach a label of 'mental illness' to grief and it may inadvertently become something to fear. Something to hide.

Do I still get sad occasionally? Yes, of course and the holidays are a trigger for many people who have experienced loss, but understanding it can give you power over it. Will some people be unable to come out of their grief induced depression on their own? Yes, but let's not label something that is natural and a normal response to loss as an illness until it's necessary and I believe each person must make that determination for themselves.