Great News!

Posted by Maggie

Yesterday was a day of low and high. It was the last day of construction--the bathroom was done, but the hall and bedroom floors had the carpet removed since I could not walk on it, and new wood floor. I am so glad to have construction workers out of the house. Of course, in typical fashion, they did not finish on time, and I had to leave for radiation without a shower, which distressed me. One of the side effects of radiation, steroids and anti-seizure medication (and probably the chemo as well) is that I get distressed more easily, and it's hard to return to an even keel. So I went off to radiation in a funk.

Radiation is not exactly painful, though it gives me a headache and makes me tired, and burns my scalp. The worst is the mask which bolts my head to the table. It's a good thing it doesn't take a long time. There are tiny breathing holes but the thing is not what you might call comfortable! This is not a very flattering photo but it's reality--I've given up all thoughts of vanity now, though I do hate my swollen face which is a result of steroids and will apparently be months like this. And yes, I'm losing my hair. Oh well it will come back. Meanwhile I'm going a bit strawberry blonde, which is what I was when I was young.

Anyway, this is how they immobilize my head. The red lines show how the radiation goes. I get 8-12 zaps of varying length, most 6,000,000 volts or more. Five days a week for 8-10 weeks,  and chemo every day by pill at home. I'm grateful the chemo is not intravenous! I have terrible veins and it's always an issue to find anything usable.

So after I had radiation I had a doctor appt. This was the beginning of the good part of the day.  The doctor is scheduling me for physical therapy now, which should help me learn walking again. But he also said I could take off the CFP brace from my left leg, and that was a huge change. It made it much easier to control and direct my foot which is now speaking to me most of the time. So much difference that I have been able to get around better in the house. Of course, having the carpet gone at the same time also helped.

For the first time in over a month, yesterday I was able to sleep in my own bed, and had the best night's sleep so far. It's made an enormous difference in my morning! I am so happy to be more mobile and rested.

My wonderful daughter is here now, helping take care of me. For the last 4 weeks I've had sisters here, one after another, and they have been fantastic. I am hoping by the time my daughter leaves I will be much more functional, but I will hate for her to go. She is seriously spoiling me (of course Bill has done that forever!).

Today we're getting a painting stool for me to use in the kitchen and at the easel. Not sure if I'll actually get to paint today or not but it's getting closer. Still fighting the hand shaking but I'm going to paint soon! Will post results whether good or not.

As always thanks for all the emails, support, positive thoughts and prayers. You are all the best!

Maggie

Roller Coaster Ride

Posted by Maggie

I don't like roller coasters.  In fact I have never liked any carnival ride more extreme than a Ferris Wheel, and I wasn't always sure about that.

Life has been a roller coaster ride for one month now. It's not just the health issues, though they are sometimes daunting, especially with the limited mobility. But to add insult to injury, I've had to spend even more time dealing with health care providers, insurance companies, etc., etc. It seems a bit much to ask to have to do all that, chasing people down to get things in order, while also figuring out how to focus on dealing with disease. Finally I was assigned a patient advocate who is now helping with getting everything organized. With the changes in doctors and hospitals, I lost a couple days before starting treatment, but it's beginning Wednesday.

One high part of the roller coaster ride this week was getting the advance copy of my book. It has been such a pleasure to see it. Another high has continued to be the contact from so many friends and family.   To my artist friends who are on Facebook, I cruise to see what you're all painting and posting. It's fun to keep up that way.

When I can do so, I think we've figured out a way to get my chair in front of an easel, with everything lowered to reach. I can't wait., and it won't be long now.

Happy painting to you all,

Maggie

Holding to Optimism

Posted by Maggie

In general, I've always been an optimistic person. I usually wake up with a sense of well-being, of direction, of knowing what I want to accomplish for the day and having some confidence I will do so. It doesn't always work out, of course, but I usually have positive expectations.

They've been a little tougher to maintain lately, but I'm doing it. What's helped now is that there's a plan —I know what day I start treatment and just what is going to be likely to happen.

And because I want to do everything I can to improve my odds I've added in going on a strict anti-cancer diet.  I've had time the last few days to do a lot of research, and there are amazing studies supporting it. The basic theory is that tumor cells are fed only by sugar and carbohydrates, so removing  those from the diet helps starve the tumor at the same time as it's being poisoned and radiated. Makes a lot of sense to me. It's not a huge change for me to make this switch, as I'd already been gluten and dairy free, so it's just the rest of the grains and all forms of sugar that go. It gives me a feeling that I'm contributing to the healing process myself in addition to trusting the doctors to do what they do.

I've sketched a little, nothing great, but good to put pencil to paper. It's still hard to hold a pen or pencil without shaking so I tried a loose watercolor where I just let shaking be part of the process. It was interesting.

One more huge positive came my way yesterday—I heard from my wonderful book publisher that an advance copy of my new book is on its way to me. It will be such a thrill to see it. The books will be available sometime in March, but can be pre-ordered any time here.

I am so glad it was completed and in production before I became ill. I have been very excited about the book and can't wait to see it in print!

Once again thanks to all of who have written, emailed, sent messages and your support and wishes. It means so much to me.
-Maggie

Midnight Roses

Posted by Maggie

It seems forever since I painted. It has been hard to comprehend that it has been three weeks now since I went to the hospital and this life-shattering chain of events began. But in terms of any connection to art, it seems even longer, though I had a painting on the easel the day it began.

Given all that is going on in my life, I've wondered why I have been so focused that I needed to draw or paint, when I'm also overwhelmed by the need to communicate with my leg, to heal from surgery, and so on.

What I think it is, is that I need to know I still am who I am, and a big part of that has to do with my art. If I can put pencil to paper, hold a brush and apply color, think about form and line and value, then I am reconnecting to who I am and what I do.

My hands shake endlessly. I found on an earlier attempt that I cannot hold a pencil or charcoal or pastel well enough to draw. So tonight, when my sleepless spell began, I decided to try some watercolor. Earlier today, with Bill's help and the use of a walker, I stepped a few feet into the studio to select supplies, so they were at hand and ready.

It did seem easier to handle the brush than to try to hold a pen. I loved just playing with color. I have looked at these particular roses, which are closest to the recliner where I spend most of my time, for the last two or three nights. I like them at midnight, when the fireplace behind them is dark and they silhouette in interesting ways.

It's not a great sketch. Watercolor is a "dabbling" medium for me, not something I do often or seriously, though it's fun. But honestly, my goal was set pretty low. I was more interested in that re-establishing of the art connection than anything, and that felt good.

I often tell my students they should save the occasional early work so that later they can see their progress. I think that's what some of these sketches will be for me --the record of the changes as I get stronger, and begin to regain some skills.

Midnight Roses, watercolor, 1-12-13.

Gratitude

Posted by Maggie

Last night's blog got derailed. I'm pretty sure it was the Steroid Witch who sent it down a different track than I'd planned. But at 3 am, it's not so easy to fight the Witch.

My plan had been to write about gratitude. I am so overwhelmingly grateful for all the support, comments, posts, and messages from all of you who have been following this blog. Initially, when I first learned what was happening to me, my instinct was to retreat for a while. But I missed my friends and the interaction with my wonderful group of artists on FaceBook.

I guess I just hadn't thought about the fact that so many people would respond, but it was the best gift possible. I don't feel isolated now, and I feel the waves of positive energy coming my way.

I've spent some time thinking about other things to be grateful for over this last couple of weeks. I'm grateful I lived through that first seizure, and the biopsy. I'm so grateful to have a doctor I trust. Family and close friends helping out with everything have been absolutely wonderful. I am so aware there is no way I could have managed without them.

So I am concentrating on the positive and how much is working well, and facing the next few days with determination. And maybe in addition to being grateful, I might learn to be more patient.

Thanks again for the caring support,

Maggie

On Being Patient (or not)

Posted by Maggie

I am not a patient person.  (Those of you who know me well can quit laughing anytime now.)

I like being busy. I always have lists, schedules, calendars and deadlines. I like knowing what I need to accomplish each day and set out to do it, then cross it off and move on.

So you might not be surprised to know that having to sdend 3 days just getting an appointment with the oncologist who is to start my treatment immediately make me pretty cranky. It's finally all sorted out, but it was just a bunch of medical beuracracy that could have been dealt with days ago.

Ah, well, be patient.

On a good note the new shower walls arrived a couple days early. I am very close to having a lovely, safe new shower.

On my short list of the worst features of this unattractive illness, I am terribly frustrated with the inability to move. I suppose the desire for independent unassisted motion connects right back to that whole bit about impatience and busy-ness.

And I'm impatient to paint. More roses arrived today and they are simply gorgeous. Shaky or not, tomorrow I think I will pull out some pastels.  Night all.

Changes and Challenges

Posted by Maggie

This blog is usually dedicated to art-related subjects. It’s going to get pretty personal for a while. I hope to reconnect to art as we go along, but life doesn’t exist in a vacuum, and art is often pushed around by events, and the blog is going to be the easiest way for me to communicate for a while. So please bear with me, skip ahead or come back later when I hope there will be less pain and more paintings. 

Like a lot of people I joked about the end of the world, or at least a big change, due for December 21, 2112 according to the old Mayan calendar.

I did not expect my own world to crash about my shoulders. In the middle of  a routine trip to the art supply store, I had a seizure. I didn’t know what it was until the doctor told me later; I thought I was just having a weird spell. But it was scary enough to get me to the ER, and begin the sequence of events that led to a fairly quick diagnosis of a tumor on my brain.

You can never prepare for hearing something like that. Denial comes fast. You must have mistaken me for someone who has time for that. Your tests are wrong. Surely it is benign, if it does in fact exist. I have too much to do to have cancer—could we reschedule that for another year? I’m supposed to be on an airplane in 6 days. You must have the wrong person.

Unfortunately, all the denial in the world changed nothing. The thing was/is still in my head.

On the 26^th the doctors performed a needle biopsy. Just a little needle, didn’t sound too bad. Well, except for that whole drilling through the skull part. There had been a fair amount of discussion about the bad position of the tumor, which was located on the motor control area for mobility of the left side of my body. I’d lost use of my left arm and leg in the initial seizure, but it came back. When I woke up from surgery, though, it was gone again. The arm came back but I haven’t been able to regain feeling or control of my leg, so cannot walk.

You look for the good stuff. It didn’t affect my ability to think, reason, or speak. I immediately had asked how far away it was from the creativity center, and they said quite a ways. I’m right-handed. I will paint again. 

Three days in neurological ICU was not something I ever want to do again. The hospital staff was great, but everything else was awful. Getting out to await biopsy results became a huge goal.

It took almost no time to become aware what wonderful friends and family I have.  I knew I had the best husband in the world but he proves it again hundreds of times a day.  Support and company from family and friends kept me from feeling abandoned.

Going Home

Going home was terrifying. It is hard to comprehend what immobility does to you. Every day, every hour, of those first few days brought such huge challenges, it was exhausting beyond belief. Still recovering from the surgery, learning how to live in my house in this condition has been overwhelming.

We live in a one-story house with no stairs. I thought navigating using a walker and the fling-and-drag foot method of locomotion that currently passes for walking would be doable, if not easy. The first real obstacle came with the realization that the door openings to both bathrooms were three inches narrower than the walker. What were those people thinking? How could anyone not make such a simple measurement in advance? How could I have lived here ten years and not known?

Looking at several upcoming months of chemo and radiation, and not being able to anticipate how much my motor controls might fluctuate from bad to worse to better, it also became obvious there was no way I could get into a shower.  So, in the space of a few days, the house became a remodeling zone. We have a wonderful friend who stepped forward to become the general contractor, and in just a few more days will have a new handicap accessible bathroom.

Meanwhile the biopsy results came back. Not as good as we’d hoped. Okay, way worse.

You look at something like this and every step is a choice. Fight or give up? I choose fight. The word “treatable” has such a nicer ring than “terminal.” Fight it. Chemo it, radiate it, starve it. Eradicate it and move on. I have too much to do and to live for,  to give in or give up. I’m fighting.

Meet the Steroid Witch

I’ve been able to reduce the number of drugs I’m taking moment, but the two biggies remaining for months to come are steroids to reduce the swelling around the tumor, and anti-seizure medicine.

The steroids are really important and really wicked. The big side effects seem to be nausea, thirst, sleeplessness and rage. I call the rage the Steroid Witch.

In spite of everything going on, most of the time I maintain a fairly even keel, a determination to get through this, and am always working on a positive attitude. But I’ve learned to hear the steroid witch coming.

The witch is in a fury, flying easily off the handle at the unfairness of it all.  She brings with her vicious hot flashes that fan the flames of rage, and she can appear without a second’s notice. The steroid witch uses bad language, has come close to throwing things, and is generally an unpleasant person with whom I have almost nothing in common. But she keeps showing up and using my mouth!  I’m hoping she will learn to behave better soon.

Art Calls

I’m itching to paint, but I think I will start with drawing. Now that I can focus a little, I think a sketchbook, pencils, charcoal, would be just right.

For several years, one of my New Year’s goals has been to draw more. Looks like that may really happen in 2013. I’m interested to see how the act of observation and drawing helps exercise my brain. Gotta keep those connections open. If the foot won’t talk to me, I’ll focus on the hands for a while.

My favorite painting subject is usually the landscape. Can’t see much of that from the part of the house where I’m spending my time. But I’ve got vases of flowers, and I think I will draw those, along with some still life objects. I'll post pics when I can.  

The Best Laid Plans

This last summer, we had a long string of back to back workshops. At the end, when we were en route home, I spent a lot of time thinking about what I wanted for 2013. I decided I wanted to take a year to travel and teach a little less, to work on my own painting, and to develop new skills and ideas.

It’s also a convention year for IAPS  (International Association of Pastel Societies). That takes a lot of my time as we get close to the convention. I worked out a good year-long plan for incorporating painting into everything else, and then began revising my five-year plan.

Looks like I’ll get that year at home, but with chemo and radiation infringing on the painting time I had planned.  I guess I won’t know until I get into it how much I can bring to focus for art in order to push forward. But I am going to paint, one way or another.

Here were my broad 2013 goals as of December 20:

1.     Spend more painting time at home, both studio and plein air; draw more

2.     Take frequent 2-3 day painting trips with Bill so we get good time together painting and having fun.

3.     Work on series of daily paintings to focus and sharpen skills; every day for 30 days, several times

4.     Continue to work on making the 2013 IAPS convention the best ever

5.     Give more time to the New Mexico Art League board projects

7.     Organize workshops for following year(s)

8.     Find ways to spend more time with family

Here is my list now:

Beat cancer. 

See above list.

Updates to follow as I can. I can't take phone calls and my ability to respond may be sporadic, but I hope to keep in touch as well as possible.

-Maggie