Steroid Hell

I knew from the beginning they'd want to make me take steroids to reduce the inflammation in my bones. I researched the names I was given for the drug: Decadron and Dexamethasone. Found out it was not an anabolic steroid, which some athletes use to pump up their muscles. Read blogs and reviews; asked cancer survivors. But nothing could prepare me for how steroids affected me.

I'm a pretty nice person. A "laid back" person. Not a b**** by any standard. But under the influence of steroids, I am. Actually, the change happens not during the four days that I'm taking the pills. During those days, I'm energetic, perhaps a bit hyper-vigilant...but not anything that terrible. It's the days after I stop taking the steroid when steroid hell comes to play.

I'll give you an example. Since January, I've been researching digital cameras that I planned to buy with some Christmas money I'd been given. I had zoomed in (pardon the pun) on a camera, was about to buy it when....I had to take steroids again. I was fine until the day I stopped taking them. After sleeping for nearly two days straight, I started an argument with Kirk about the camera. Here is what I wrote by e-mail to Kirk when he asked me when I planned to put in my order for the camera:

Kirk,

forget it

forget it

forget it

i don't care

i don't want it

what's the point?

i can't take it with me.

Sherry

Reading this I can tell how depressed I had become. And I was taking Ativan to help take off the edge! This is just one example. I have plenty more that are more embarrassing and sad. It took me about five days to stop feeling like everyone was against me. To stop feeling like I wanted to die. To get back to myself again.

As bad as this seems, it was much worse when I had withdrawal in December from taking three four-day cycles of steroids for two months. I was not only a b****, but an illiterate and paranoid one. For an entire week, I felt as if I was trapped in an acid trip. I wandered around the house trying to remember if I'd changed my underwear or not. I'd cook food and forget to eat it. My vision was double and my face became the shape of a full moon. I'm past that now, but I had a little reminder. A little loss of self among the many losses of self I've endured in this process, making me even more determined to move from hell to happy as often as possible.

(Happy's Restaurant in Carlsbad Caverns, NM; Summer '06)

Buying a Wig

About two weeks ago, I visited a highly recommended wig shop in Plano. Everyone was so nice, but....most of the wigs I tried on made me look and feel like an aging country western singer. That's when I realized: my high school punk-ass heart had somehow lingered on, enticing me to find what seemed NONEXISTENT in these cancer wig places--the pink, the blue, the Lepracaun green, or even the deep purple wig.

Then I heard from my doctor about another place in Lewisville. I wasn't hopeful, but decided if the place didn't have SOUL I'd forget the wig thing altogether.

I made an appointment for 3PM on Saturday. Jacob and Kirk decided to come with me.

It didn't take as long to drive to the place, so we ended up having time to catch some lunch at Super Salad. Since getting cancer, I've been on a quest to get Jacob to make healthier choices. Here's the plate he put together when I challenged him to "go healthy." What do you think?

Anyway, I'm coming off of steroids, so my choices didn't turn out so good. See what I had for desert...






At 3PM we made it to the wig shop. The first thing I noticed was how much at ease I felt. Kirk sat in the corner playing a game on his Blackberry, while Jacob entertained everyone. I was ushered into a little room, with my family following.

Wig after wig was tried on my head. Only straight hair wigs seemed to work. Bummer! I had such curly hair. He finally brought out a deep purple wig. It was lovely. Quite punk. But I knew it wouldn't work. I needed something I would actually wear.

Finally, I made my decision. I'm going back on Friday. On that day, the man will cut my hair short (because you don't want it to fall out long and you don't want to shave it--because it'll itch). Then, he'll cut the wig and fix it to fit my face.

I'll show pictures (if I dare) on that day.

The Human Side of Knowledge and the Tandem AUTO/mini-ALLO Stem Cell Transplants

Knowledge concerning transplants as a treatment for Multiple Myeloma can be found with ease. Definitions, especially, abound often annotated with carefully written descriptions.

For example:

AUTOl·o·gous (ô-tŏl'ə-gəs) transplant: a transplant of tissues involving one individual as both donor and recipient. i.e. An autologous stem cell transplant refers to stem cells that are collected from an individual and given back to that same individual, as in autologous bone marrow transplant.

AND--

mini ALLO·ge·ne·ic (āl'ə-jə-nē'ĭk) transplant: a transplant of tissues involving individuals of the same species that are sufficiently unlike genetically to interact against the cancer.
ie. A new approach to treating myeloma; mini-allo transplants involve the use of moderately high-dose chemotherapy in combination with an allogeneic stem cell transplant without destroying the bone marrow completely as with the auto transplant; safer; more tolerable; an alternative to conventional allogeneic transplants.

And Yet...Something is Missing: the Human Side of Knowledge

I once believed that knowledge was power. After five years teaching elementary age kids in squatty, sub-standard portable buildings at Zilker School in Austin, I was finally assigned my first classroom in the main building where, despite its age, both teachers and students had access to things like phones and bathrooms. My new room was beautiful and enormous. A wall of windows overlooked a courtyard of live oaks. Bluebonnets in spring adorned the sidewalks just beyond. The best feature: a vaulted ceiling of unbelievable height.

So my first purchase for the upcoming year that summer at the teacher supply store was a colorful card stock banner that I laminated. It read: KNOWLEDGE IS POWER. I attached the banner with magnets (because no tape would hold in the humidity) to a metal beam near the summit of the room, and there the banner remained for some years.

When I moved on to teach at Bailey Middle School, I took down the banner, but, in essence, it has remained--magnetically attached to a beam in the room of my heart. For I have subscribed to this belief in the power of knowledge for most of my life.

Yet, now that I have cancer, and have a high need-to-know concerning my treatment, medications, alternatives and so on, I find myself turning once again to knowledge as a source of power in my fight against cancer.

But, if there's anything I've learned in the months since my diagnosis, it is that cancer belies knowledge. Knowledge is NOT all-powerful with cancer. That's because doctors don't really KNOW cancer. Doctors can pretend they know cancer, and you can pretend doctors know cancer, but it still won't be true. Truth is, when faced with treatment options--to obtain a transplant or not, for example--it really comes down to FAITH (a gut reaction,) not KNOWLEDGE. Not necessarily faith in God (though that type of faith is a requirement of mine,) but faith in the treatment that is chosen.

But I have noticed a problem in this knowledge versus faith continuum concerning cancer that I will hope to remedy in this blog. The problem, once again, is one of knowledge, or rather lack thereof. That is, the mystery of the transplant procedure itself. There ARE plenty of books, pamphlets, and even blogs about bone marrow transplants, but most of them focus on the facts. I think as a person about to embark on a transplant journey I want more than knowledge of devices and objects. I think what I need is insight--that is, the space where humanity meets technology and finds a common ground. (A post-human sentiment for those of you who know what that is.)

So, be it as it may, I'm going to do that in this blog. Starting on February 26th, but also in the days leading up to it, (I've already started) I will cover day to day my experiences both in words and pictures of the human side of the bone marrow transplant, giving knowledge to faith and dispelling some of the mystery.

Color Me Well by Sherry Wilder

Lose me in blues that whisper words unformed,

In violet-ish shades of blue all quelled.

Unhinge my stress in azure light transformed.

Release me; with the iris let me meld.

So quench the uplit reds, all damask darks.

Unstring the crimson lavas beaded bright.

Pour out the splashy colors of red larks;

And break the seals on merlots stained full bright.

With noiseless whites let God unloose my bones.

Unloose the tethers strung for me inside.

Flood on the ashen crusted waves alone.

In milky painted snowscapes, let me hide.

Let only tender colors shade my hues;

For I have too much light for me to lose.

Toothy and the 80's Ape

Here's a chuckle! My mom sent these for Valentine's Day.

They sing; they wiggle; what more could you ask?

Thanks, mom.

It's Official: I Start February 26th, 2007

According to the transplant coordinator at MD Anderson, my transplant and myeloma team want me in Houston, ready for appointments for the autologous stem cell transplant, starting Monday, February 26th, 2007.

At this point, all I can be sure of is what will be happening during WEEK 1 (February 26th-March 2, 2007): "port" inserted and bone marrow biopsy

But I should know more about other weeks as my e-mails and questions are answered more fully.

Starting March 5th, we'll be living in a furnished two bed/two bath at--

(NEW)

Brompton Court

7490 Brompton St.

Apt. 208

Houston, TX 77025

Right now, Kirk is still working on where we'll stay the week before March 5th (starting February 26th.) It will most likely be a condo near MDA or (if we can get higher on the cancellation list) at Rotary House. They are booked solid February 26-28th, but we have reservations for March 1-4 just in case we can add on.

My mom has reserved her flight to Houston from Albuquerque. She arrives Saturday, March 10th at 9:10PM by flight #2576 in Houston Hobby, then departs Sunday March 18th by flight #2421 at 8AM.

Jacob will be there March 4th-March 18th, but we haven't made his flight reservations yet.

"Little" Sister

My sister, Lisa, and I were born two years and two days apart. Though we were both (supposedly) "Virgos" and born in the same volatile era of the mid-60's, we had little else in common. I remember when I first peered over the crib to cast my eyes upon the present my mom brought home to me from the hospital: the little butterball of dark-eyed, angry flesh that was my sister. She screamed. But I was unaffected. I loved my sister from the first moment I saw her--probably because she was, in many ways, my opposite.

As the years went by, we got to be friends. Playing together almost constantly. In this picture, we're seated (I think) on a metal lawn chair my Grandma Jerry had (or maybe it was my Grandpa Fred's chair). Lisa's the one on the right about to sink her teeth into a nice book. I'm in the bonnet on the left.

Lisa grew up to be one of the strongest and most beautiful women I've ever known. Olive-complected, lean and taller than me, she is a safety engineer and owner of a company that works for the National Lab in New Mexico. She prays with me when I need it most and is quite the strong Christian. I love her very much, and thank my mom and dad for getting her to me. Lisa and I both have children of our own: one boy each. Sometimes I wonder how they'll do without a sister (or brother) like I've had to make it through the world.

Despite the huge differences between Lisa and I, she just happens to be a match for my bone marrow. Go figure! Who'd have thought such a thing were possible between two women so different.

God moves in mysterious ways, huh?

Love Day

Valentine's Day, 2007. A quiet day. A box of chocolates and other gifts are here from loved ones, making me feel supported. But such a quiet day. The news threatens snow, and snow it is for loved ones all over the North and other places that I can't keep up with.

Jacob and I On Vacation in CO (2004? Kirk is behind the camera.)


It is a quiet day to think about what love is.

In the past, my first answer was automatic. God is love, and love is God. But now I find myself drilling down on this assumption, asking God what love really is to God.

The answer is usually silence.

The truth is...I cannot hear or see God. I have seen and experienced evidence of God, but the true vision of God is in the experience of love...here on earth...day to day. So, in that aspect, love IS God. Since love when it comes at just the right moment, unexpectedly...embracing you in some poetic space that is really supernatural, if you think about it, then it IS God. What else can love be, when it comes out of nothing?

For God comes and came out of nothing.

But what of all this quiet. The human condition is, by default, quietness. Turn on the television, radio, music, your car engine...let all this roar push out the quiet, but it is all still there when the day is over and sleep comes. Quiet is the space of love, to me. I have come to learn this. It is knowing that, even though I cannot see God, I can feel God in the quiet.

This is the place I have come to. And I send you God's quiet spaces for you on this, the day of love.

Peace.

(By the way, if you're having trouble getting through on my SWILDER@ccccd.edu e-mail, it has been acting up lately. Try k-swilder@tx.rr.com. You will have better luck sometimes.)

No More Velcade, But Antibiotics

I'm happy to report that I'll probably not be doing any more Velcade injections, since the transplant appears to be coming up soon enough. I have only 7 more steroid pills to take tomorrow, then I'm done with that. Dr. Stokoe, my local oncologyst, was worried about my cold becoming an infection, so he prescribed antibiotics--a Z pack. That's fine. It's already helping, and I was worried, too.

I slept very well last night and woke up feeling really good this morning.

Kirk negotiated the apartment stay and when we know exactly when I'll start the transplant, he'll work out the condo or wherever we'll be staying before March 5th.

Tomorrow is Valentine's Day. But, for some reason, I don't feel it. I guess it's the steroid affecting me again. Nonetheless, I'm happy that I have such a wonderful couple of sweethearts living in this house with me. I'm feeling peaceful about the transplant.

Life is good.

Oh, the Humanity!

I was asked just now by the transplant coordinator at MDA what date I would prefer for the transplant to begin. I requested February 26th, but that won't be official until.... She also said I should be prepared to be in Houston for 8-9 weeks! Didn't know that...but we'll see how things transpire. I thought it would be only 6 weeks.

My mom will be there for a week-long visit from March 10th-18th, 2007, during Jacob's Spring Break.

The apartment we want will not be ready until March 5th at 3PM, so we'll most like live in a condo near MDA for one week until move in time. That will be good as the first week is a lot about tests, biopsies, and getting the port inserted.

Transplant (Near) Specifics

The transplant coordinator from Aetna called today to say I am now officially approved for the transplant. The official letter, she said, is going out in the morning mail to me and MD Anderson. When it is received, it's really official.

It looks as if the transplant will occur anywhere from one to two weeks. If it's one week, we'll head to Houston some time this weekend! If it's two weeks, the next weekend.

The apartment we liked the most--Brompton Courts--will not, however, be available until March 5th at 3PM. We'll most likely stay, then, for one/two weeks at an apartment complex next door to Brompton Courts that has availability now.

Jacob's Spring Break falls very conveniently on the week of March 12th, so he'll be in Houston then. But he will also (most likely) come to Houston for the week before to help with the move (and because I like having him around so much.) We are not taking much with us, but Jacob will certainly be a big help when it comes to setting up my computer there. I may not, at that point, be feeling very energetic since by then I will have had the high dose chemo injection. Jacob will be able to help most just by being there--with his constant source of youthful energy and joy.

Of course, Kirk, my sweetheart and love of my life, will be there the whole time, working his little heart out while trying to help me get through this. I thank God for him; he is such a wonderful man.

My mom will probably come to help, also, the week of Jacob's Spring Break. But this is not certain, as I've not had a chance to talk directly with her today.

The entire process will most likely take six weeks, but I've heard at least one person report as little as four weeks and another as much as ten. I'm sure I'll know soon from my transplant doctor or the MDA coordinator.

Above are two pictures of bone marrow cells. The one on the left is bone marrow with Myeloma clusters. The one on the right is healthy bone marrow. My focus is, of course, on the ultimate outcome of the transplant: that picture on the right, the healthy bone marrow.

But everything in between will come in small steps. First, I get a "port" inserted near my chest area in an out patient, but heavily sedated procedure. I met a guy at the Wellness Place who had just had his put in. He was fine, though the bump near his collar bone was like one of those sci-fi horror movies where a "bug" is somehow under the skin. It will help so much though with all the injections I'll be getting. I am tired of people messing with my veins (and, frankly, my veins are tired of people messing with them.) No more needles with a "port"!

My sister, in perfect timing, sent me (all of us, really) the most beautiful velvety rose flower arrangement. They are so perfect. Thank you, Lisa. What a nice surprise and so thoughtful!

One More Insomnimantic Funny

Link to baby laughing: http://www.vidmeter.com/?v=mtk8r9usgi

Insomnia and Shoes

Can't sleep tonight, so I'm back to the shoes. All those shoes I once sold on E-Bay, now taking up space on my computer. Mostly Converse. Some Docs. Or vintage finds. Years ago, I delighted in the sale of a pair of vintage Converse, whose final bid was over $60, though they cost me only $2.50 at a Thrift store. Below are a few of the many pairs I never sold. Too busy teaching Humanities at the community college and working at UTD toward a Ph.D. In January, I gave away the Converse. It was a cold day. A bit of double vision deterred me only a little. But I determined to give the shoes to The Inn in McKinney. It's the only homeless shelter or shelter for runaways or shelter for anyone needing shelter all of Collin County. But I gave them the shoes because I had a debt to pay.

So I'm clear now. I've made restitution and I'm free. These are the things I think about when I can't sleep because of meds. Shoes beautiful shoes. Like wearable art for the feet.


And the experience of God I had in settling a debt. Freedom.

Funny story: I once sold a pair of leather super hi red hot Converse to a guy in London. He wrote me back to say, "These shoes are hooorrrny." I resolved that he was punk and laughed a lot about it.

So...welcome to Planet Sherry (on steroids)...

Sweet dreams to you, my beautiful shoes. May you bless many feet with your brilliance. May the paths you lead these feet down take them to happiness, prosperity and an experience of God. And let the path be gentle on the feet that walk in these shoes. Let it be gentle and peaceful, a good and easy journey. Then when these shoes bring them to their destination, may it be a healing place. In Jesus name. Amen.

"And miles to go before I sleep. And miles to go before I sleep."--Robert Frost

More Dex, But No Velcade (For Now)

Despite this nasty head cold, I started today a new four-day round of Dexamethasone (generic form of Decadron.) I told myself I'd never take Dex again, since the withdrawal in December from taking it on and off for two months was terrible. It's only a maintenance dosage, however--less than I was taking before and only for four days. This is so I'll stay at .5 (or less) for the transplant. Monday, I'm to call my MDA transplant doctor and see if anything new has transpired concerning dates for the transplant. If it's coming soon, I won't need this month to take any Velcade (injected chemotherapy pictured above left.) Just the Dex (what my doctor calls "oral chemotherapy," pictured above right.)

I prayed over the pills this time. Something I learned from a therapist named Mike at the Wellness Place in MDA. I am believing that this will reduce the side effects, as he suggested it would. I've always prayed over the injections of Velcade, but hadn't thought of praying over the Dex. Praying over Velcade really worked, since I've had no hair loss, nausea or weakness lasting longer than one day from it.

For those of you who have continued to pray for me, thank you again.

If you were praying for discernment concerning the transplant, I am still seeking God about it. But I must say I've felt greater and greater peace about the transplant. I think I feared the transplant (like so many others in my situation) for what the injection of "major chemo" in the form of Melphalan has done to others who've taken it before me. But I can pray over the Melphalan, as well, and let God protect me.

Cancer has made me into something of a prayer warrior again, wouldn't you say? I mean, I've always enjoyed talking to God, but haven't for many years been in the habit of asking for so much from God since this cancer came along. At least, not for myself. In the past, I liked to pray for my family and friends, even for rain, but prayer for myself specifically...that's not been so common.

Whatever the case, for anyone taking pills or treatments of any kind, I recommend praying about it. I feel as if I may be in this situation because of prescription drugs I've taken in the past. (Listen to any commercial for pharmaceuticals carefully and you'll find that there's usually some risk of Lymphoma, a cancer related to MM.) If I could, right now, I'd stop taking meds altogether. But I'm sticking to the regimen three oncologysts have prescribed. When I'm done with these treatments, I'm off meds forever. They are just too dangerous for me. And, as far as I'm concerned, they may be too dangerous for human beings generally. (This is my alternative side talking now.)

With all this talk of praying over things and swearing off meds, you might think I've turned into some kind of fanatic. Well, guess what...it's true.

I guess the "free radicals" that caused this cancer have turned me into a radical myself. Rock on, Jesus.

(By the way, I love to read your comments on this blog. I feel much more connected that way.)

A Path and Footprints

These are photos I shot at the Plano preserve, my favorite place for a long walk. Since coming home, I've had a nasty head cold. Looking at these photos I took the week before my February check up, I remember how great I felt before going to MDA and, likewise, feel energized now.

The Suffering Mold

I think I'm allergic to MD Anderson. I've been four times, and all four times I've returned home with an elaborate rash. There must be something that rubs off on me when I'm at MD Anderson. Kirk says it's nerves--naturally the place makes me anxious. Friends say it's "Western Medicine" (to them, an evil empire) that wears down my defenses so as to subjugate me to its will. Others say I should wash my hands more when I'm there, since I must be picking up a bug from various infested people.

But I say it's pollen. Mold pollen that's extra strong due to its mixing with the energy of suffering that dwells along the labyrinthic corridors of MD Anderson. All my life I've reacted to mold. And in my childhood, living near NASA and the Gulf of Mexico, there's was always plenty of mold to torture me. Before moving to Austin, where I attended college, I thought 90% humidity was normal. Rain, too, was the norm in the Houston metroplex and with it came mold that gave sustenance to lushness and decrepitude the same.

But this mold pollen is a hybrid type for it has grafted to suffering, and that is a hard one for my body to overcome.

Strangely, I have always had an awesome immune system. I've rarely been sick in my life, until now. I can count on one hand the number of times I've caught the flu (and that includes the times I've gotten strep throat.) I am allergic and I've had plenty of migraines, but fevers....rarely. I had Chicken Pox when I was a kid...just one or two on the back of my neck. But I somehow eluded contracting other childhood illnesses...at least not to the degree my friends and neighbors got them.

But this "suffering mold" is beyond me. It slams me every time. Sometimes causing a rash; sometimes creeping into the bones in the middle of my back, causing backache and tension. This time this "suffering mold" found its way into my head, giving me a nasty cold.

Thankfully, there is at least one good thing about MD Anderson's "suffering mold": the further I get down the road toward Dallas--the less power it has over me.

So what, then, will I do when I have to go there for six weeks during my transplant?

the latest

Met with Dr. Weber today. Good news. I dropped .3 points to .5, which is not as dramatic as month before, but still very good. Whatever the case, all's a go for transplant. We are to call Monday for possible dates of transplant. Can you tell I'm writing this on a Blackberry?

The Alternative Side of MD Anderson

I did not think it was possible, but there is an alternative side to MD Anderson. It's called the Wellness Place. Everything from reduced-cost acupuncture to Tai Chi is offered. Since I'm an alternative kind of chick, I decided to check it out. The class I attended was being taught by a guy named Mike (pictured near wall in background of photo) whom I immediately liked. Three hours later I walked out with all the knowledge of the ancients and, of course, of Mike himself. Though most of what I learned was too...unbelievable to mention in this unassuming little blog I've created, I must say I think it may help me. It was all new stuff and that's saying something, since I thought I'd heard about every alternative treatment for side effects there was.

It was good, and mainly because, for some reason, though it was weird stuff, it didn't creep me out. And I think I attribute that to Mike. The guy teaching the class. A fifty-something Zen master type with about 20 years of experience doing "energy work."

I also met a few cool people on their way to enlightenment (other cancer patients) and obtained a meditation for cleansing my bone marrow.

Today, we see my main doctor--Ms. Donna Weber. Then, if I can get near a computer, I'll report to you what I already know: that I am even further or at remission status.

Please pray and thank you for praying. No matter how many alternative treatments may tickle my fancy, there's still nothing as effective for me as a good ol' dose of Godly intervention.

Kirk Arrives

Kirk arrived at the hotel around 6:30PM. It was so good to see him! (He IS rather handsome and quite entertaining.) We went out almost immediately to eat at Fu's Garden Hunan Chinese in the Rice Village. I order shrimp to test places like this and they passed the test: the shrimp were big and de-veined. Praise to you, Fu's Chinese.

We drove around after eating to see some of the apartments we might live in. MD Anderson gave us a list. Two of them look just like apartments in Frisco and, though nice, we are looking for a different experience. And we certainly found it in Brompton Court Aparts. Big pillars out front, lots of very tall trees (Toto, I don't think we're in Frisco any more,) and near to shuttles/metro transportation. I do believe we're going to check Brompton out more completely tomorrow.

Jacob reports that he had a very good experience at the Wednesday night youth meeting he visited. Sunday we found a church called Bethany Bible Church in Plano that we feel will be a nice church home. Jacob learned about Jesus and heard his first Christian rap song. He is very excited about their youth program there. And that's a very good thing.

Good night all. Thanks for praying.

Social Worker Visit

Went to see the Social Worker and it's all good. We DID talk about death, but not erectile disfunction or incontinence. She was very nice and told me that this was one of the last things the insurance company needed to get the transplant moving along. We also talked about the transplant and what I could expect. I discovered that I will likely be an inpatient (actually in the hospital) nearly as much as I'll be outpatient.

Now I'm going for walk around here since it is so beautiful outside.

We'll talk again tomorrow when Kirk will be here, and we will look for a place to live.