Cat Scan Tomorrow & Transplant Doctor Visit

At 7AM tomorrow morning, I'll have a Cat Scan of my head and neck area. I have no idea why. But I'm sure it has something to do with making sure I have no bone lesions, since today I had my long bones x-rayed. I had an MRI for the second opinion back in November, but a Cat Scan is different somehow. No eating 3 hours before--like I'm going to get up at 4 in the morning and have a little snack! I'm hoping I won't have problems with clausterphobia like I did with the MRI at first. But Kirk will be there to get me through it even if there is a problem. That's what worked last time for the MRI.

I'll be seeing Dr. Popat at 9:30AM, and I'm hoping he'll have the results of all these tests I've been doing. I also have some questions to ask him, so tonight I'll be making a list. A kind of enchantment falls upon Kirk and me when we are in the presence of these doctors. All of our questions fade to the back of our minds, leaving us without questions--and, thus, without answers.

Friday morning, the catheter will be inserted. I took a picture of the thing, but can't get it to upload! I'm going to try again. Next week, I'll have my computer at the new apartment--maybe the internet will be able to handle my pics then.

Update

The BM biopsy went much better than last time, though I was not able to take Kirk into the room with me (as I had been promised by Dr. Popat.) I DID, however, get to take Versed, which was a lot like drinking five martinis all at once. It was all good after Versed.

The biopsy also went well because I had learned some new relaxation techniques since my last one, and I used them. I even went to my "healing place"--a bank by a river at Middle Earth.

I am now a bit sore. I slept much of the afternoon, so I'm not really tired. I am moving slow when walking. Felt good enough to make dinner, though.

We got the internet to work both at MDA and here at the condo. But the condo signal is not strong enough for me to get pictures downloaded to this blog. Bummer. Nor can I adequately edit the last set of pics I put on this website. Oh, well.

The catheter insertion had to be rescheduled because I took an Advil yesterday. I had no idea when I popped that pill for my headache that I'd be re-arranging the schedule by doing it. I'm actually kind of relieved. Today was enough of a DAY for me to have another DAY tomorrow. If you know what I mean.

Bone Marrow Biopsy Today

I have several appointments today, but the only one I care about is the Bone Marrow Biopsy. Gave 11 vials of blood this morning for analysis! A jug of urine and then a cup (who knows why theky can't get enough from the jug.) Just finished x-rays of my chest. Then, my next appointment: some kind of interview to teach me how to give myself the shots for harvesting my bone marrow. I think. I wonder if they'll give me a row to hoe.

But the only one I care about is the biopsy at 1PM. Had to fight for partial sedation with Versed. I'll take that about 30 mins. before in syrup form. Then, the fun begins. I really don't like bm biopsies. They suck. You lay on your belly and next thing you know somebody's digging into your hip with a long needle. Maybe this time, I won't even know what's going on. For this sort of thing, I like it that way.

After that, all done. Don't think I'll be eating bar-be-que tonight. It's chicken and brocolli with asparagus (Jacob's favorite food--joking) for me.

The weather is still fantastic here in Houston.

A Mish-Mash of Pics

The Myeloma Center at MD Anderson. (I wasn't supposed to be able to take this picture...but nobody stopped me.)

A view of trees from the condo.


Condo bedroom in the morning.

Okay, so here I am in the new wig. (I don't even look like myself--oh, well.)

Cassy with her happy face on--in the car to Corpus.

Internet Angst, Sister Joy

The condo is great (in a slightly beat up way,) but no internet access. So Kirk and I drive to MDA (less than a mile and a half away,) thinking we can use Kirk's laptop there. No luck there. The laptop won't connect or there's nothing to connect to. Called both the MDA help desk (no help there) and Kirk's work help desk (same as MDA.) So now I'm at a cyber center at MDA, unable to download pics off my camera, but still able to write my daily blog.

Here's one really great thing: waking up with huge oak trees peeking over the little fenced-in back porch of our condo. AND it's actually a little bit cool here is Houston--weatherwise. ALSO, my sister called while I was at SuperTarget, which I walked to. Add all those things together: oak trees, cool weather, walking distance to groceries, and getting to talk to my sister--and you've got JOY.

Hopefully tomorrow...I'll be able to bring my downloaded pics.

on the road again

Arrived in Corpus yesterday to leave animals in the care of sister in law and visit. Heading toward Houston today. Going the scenic route. All is well. Pics Monday.

Going Away Party (From My Cat's Perspective)

Martin (my cat) says:

There was a going away party for Sherry at Joe's house next door, but I wasn't invited. Isn't that nice.

A bunch of Sherry's friends from the neighborhood had cake and ice cream, but I didn't get any at all (though I could smell it all the way over here at THE HOUSE.)

Sherry got presents, but I didn't get any presents. (But I snatched some pink fluff from one of the packages when she got home. It didn't taste all that good. There were some tasty-smelling candles in it, but candles are never tasty.)

I could hear everyone was laughing (since I have EXTREMELY good hearing and smell, in case you're new to this planet and don't know that cats are TALENTED,) but I didn't get their jokes.

Hugs were shared, but...well, I didn't want any.

I know their leaving for some place called Houston and MD Anderson, and they think I think I'm going since their taking me to Corpus Christi, but I KNOW I'll be staying with someone named Ina who's got a BIG DOG named Baby (go figure) and a LITTLE DOG named Puck (???) I wonder if these dogs named Baby and Puck will become MY DOGGY like Cassy is MY DOGGY.

Anyway, tomorrow's a long day. I better go practice staring contemptuously at MY DOGGY since I'll be staring contemptuously at MY DOGGY all day tomorrow in the car.

Joy.

Dreams of Water

I have dreams of water that tell of things to come. Since October when I was getting shuffled around from one specialist to another, my dreams of animals and houses, too, gave me information that helped me to cope with the confusion. But my dreams of water--and the more specific wave dream, as it's called--always foretells of change. Last night, I had such a dream.

I want to tell the dream, but before I do I should say that I discovered through my therapist and some research online that others have wave dreams that also always foretell change. The changes that arise are universally among wave dreamers of major importance. I remember reading about one women whose wave dream foretold her unexpected return to prison from being on probation.

My last major wave dream happened two days before I was diagnosed with cancer.

In my dream last night, I was in a mobile home with my mom and my sister that was parked in a state park with pine trees all around. A huge storm was kicking up outside with thunder and hurricane force winds. I opened the door to see a large ill-formed funnel cloud angled across a mottled black and gray sky. I suggested we flip over the couch and get under it to protect ourselves in the collapse. We did and underneath we clung to each other fearfully, forming a hug circle. The mobile home began to toss as flood waters I knew were clear and clean washed the mobile home down a gully through the trees. The tornado winds struck the sides of the home, condensing it to the size of a pop-up trailer with nothing popped up. We floated on a while longer in this cocoon-like RV, then came to rest at a patch of dry earth behind a cabin. But beyond the cabin, the flood raged on, washing everything on down. We were saved.

In dreams like this, I've learned to look at what is different to understand what it's telling me. Usually in wave dreams, I'm alone and, if there are others, they don't see the flood waters or the wave coming at them. Since my mom, my sister and I huddled under the couch together in a hug, it's clear that I am not alone at all, but supported by their love. Also, the flood does not injure any of us in any way. We don't even get wet. A dangerous collapse threatens us, but we remain safe because of my suggestion to get under the couch. But, also, the mobile home helps, too. It is a rather flexible home! The water is clear, which usually means healing. Therefore, the dream is clearly telling me something scary and unbelievable is going to happen, for which I'll have the support of my family, but I won't be harmed. In the dream I had before the diagnosis, I was almost washed out the door. Only my cat did not survive and was washed away as I saved just my dog, which I held in my arms. This time I held my mom and sister in my arms, but not because water or wind threatened, but for emotional support. This is also significant because the night before I dreamed again of my mom and my sister. Family, once again, is so important to me these days.

I wonder what the scary and unbelievable thing will be that happens in the days to come?

Time Line for Autologous Transplant (Updated)

Week 1: Tests/Catheter/Labs/BM Biopsy/Doctor's Appointments
Week 2: Stem Cell Collection/High-Dose Chemotherapy
Week 3: Rest
Week 4: Transplant
Week 5-6: Follow up

The transplant coordinator called today and gave me my appointments for next week. She reminded me that one of the things I'll be doing is giving myself injections to start the mobilization of cells to my blood. This will make it possible for collection of stem cells to begin during week 2.

Stem-cell collection can take more or less time depending on how quickly the cells respond and mobilize to the blood. They need to collect a certain amount, so that also affects timing.

After the transplant, engraftment, or when white blood cells return to normal range, takes 8-14 days. During this time, in order to be discharged, my white blood counts, platelets and red blood counts must have recovered adequately.

MD Anderson always sends my appointments via My MDAnderson, a web-based appointment system. But they haven't given me any specific appointments, yet.

Insurance Love

My insurance sent authorization today by letter for "tandem autologous stem cell transplantation followed by non myeloablative related allogenic stem cell transplantation." They've given me until Valentine's Day 2008 to do it, the sweeties.

I must be special.

Since they've authorized $230,000 just to save my life.

And it must be love.

(Pond Slime With Rebarb, '07)

Sunstone Cancer Support Centers

In December, I went to a cancer retreat at a place called Sunstone Cancer Support Center in Tuscon. I chose Sunstone because Andrew Weil recommended it in Spontaneous Healing, but also because it was free.

Sunstone does ask for a deposit of $150 when you register, but you get back the check at the end of the retreat. They warned, as well, that they would ask for a donation at the end. But no one ever did in person. It came in the form of a note on an envelope taped to my cabin door on Sunday. I was under the influence of dex while there, so I didn't want to make any decisions.

A month or so later, after I realized and remembered the benefit of attending the retreat, I sent in my check. Of course, for some people there's the cost of the flight. Whatever the case, Sunstone does so much, they deserve all the support they can get monetarily or otherwise.

I remember how I transformed while at Sunstone. I arrived feeling overwhelmed and old. Forty-three is not all that old, but I felt as if I were 90. On Saturday night, five of us (three of them pictured here; the fourth, sits to my left in the group pic) decided we needed to make a mad run somewhere. One of us had never been to Walmart! So, of course, we had to go there. We only had a truck, so three of us piled in the back with blankets, while the one from Canada (because she's special) rode shotgun, next to the driver, wearing a pink angora hat since she was bald from treatments. Busting down the freeway, the three of us in back tried to take pictures in the dark as hair whipped around our faces. We had a buttload of fun at Walmart, but the kicker was when we got back to Sunstone. There, we piled out of the truck with our treasures, laughing hysterically. It just so happened an elderly gentleman (the facilitators husband) was pulling in just as we did. He didn't say hi and actually seemed angry with us. Later, we found out he'd reported to his wife that a bunch of teenage hooligans had just pulled up in the parking lot and were probably up to no good.

I had gone from a 90-year-old cancer patient to a teenage hooligan. It was a wonderful transformation. For this reason, I'm sure I'll be going again, when the transplant is done.

But for now, I want to tell you about Sunstone because it helps me remember the joy I had there. For one, Sunstone is a beautiful property. It's not large, but it's filled with beautiful twisted oaks and dessert plants. Mountains overlook Sunstone from the distance. The colors on those mountains are stunning. The rooms are homey. My shower was so big I felt as if I could have played handball in it. I had a window with a view of a large tree. The food is awesome and healthy. A huge plus is the therapies they offer: cranialsacrial, healing touch, Quicong, and on. These are private sessions that will change your life. They do ask for a small donation ($30?) for the therapies, but that's not even a requirement. The best thing about the place, by far, was the people I met who had cancer. It's been two months since the retreat and we are still keeping in touch by e-mail and phone calls. Despite the fact that people in the group were in so many different places and had so many different cancers, we bonded.

It helped me not to feel so alone. Now, if talking in a room for hours and learning "alternative" ways to breath, deal, heal, and think is not something you'd enjoy, you better not go. But I think everyone got something they needed from the retreat. Both men and women.

For more information about upcoming retreats or to donate, go to www.sunstonehealing.org.

What is Life For: My Mom's Answer

My mom (←pictured w/ me, age 2?) recently wrote a paper at my request answering the question: What is life for? Here is what she wrote:

Life is for the glorification of God. My early Christian training has that statement branded on my brain. In a much more complicated and broader sense, I still believe that.

Life is a gift from our Creator. It is impossible for me to imagine the Creator or the Universe and those regions far beyond of which we have no concept. At this time in my life I say, “So what?” By now it is very obvious that this Creator loves us/me. I am so content with that. He can look like or resemble anything He wants.

My dad (Grandfather Fred with me, Grandma Helen→) always said that God is the Alpha and the Omega, and it says that in the Bible. I never really “got” that until recent years. Now I am comforted to know that with God there is no beginning (Alpha) or end (Omega). I don’t know why this would/could be so. I just feel it.

Life is about that other “L” word, love. Life is for loving. Every time we forgive we get a little more insight into what Love is. God is Love. That is as far as I have ever been able to go with my reasoning.

When we get the knack of forgiving others we soon find out that somewhere along that line of experience, we forgave ourselves. Loving ourselves happens then, making loving others a piece of cake and oddly enough, a lot of fun.

Life, of course, is for living. We take the Creator’s gift and we do our best at the living of it. We become aware. We find now more fascinating than before and after.

When I was a youngster I thought of us people as being created for entertainment for God. “He” was lonely so he created us to fumble around down here on earth while He watched from up there in heaven. I figured that He gave us free will so we could win/lose at life and praise Him or ask Him for help. Then He could feel camaraderie with His creations. That concept seems so narrow to me now.

Nowadays I would say that, basically, life is for living to the hilt or more accurately, as far as we dare go. That’s where faith comes in, the daring to risk at living and loving. I think of it as flying through the air with my mouth open, not worrying about the bugs that might fly into my mouth.

Babies are born with that flying concept and bust through life learning to talk, walk and risk until they learn something different. Sometimes it takes years of practice to get the concept back and includes letting go of a lot of preconceived notions about what life is for. God doesn’t want us to throw our “gifts” away foolishly; at least that is what the Bible says in different ways.

What is life for? Learning and practicing are certainly part of the game plan, carried out with courage and curiosity, faith and joy, all in the name of Love. Any bugs collected while flying are just part of the journey.

Final note (from Sherry): Evangel, Uncle Pat and Aunt Dot, Aunt Daphne, ANYONE in the PARIS, WILDER or related clans who'd like to submit a statement answering the question: WHAT IS LIFE FOR? please send to my e-mail at swilder@ccccd.edu. I'll publish them, if they're not obscene (just joking.) Send old pictures, too, if possible with your statement.

What is Life For: My Dad's Answer

In a recent e-mail, my dad wrote the following as his answer to a question I'd been asking about the purpose of life. He also sent some old photographs of his life as a boy growing up in rural San Antonio. (The boy on the bike is my dad→)

What is life all about? That's the big mystery. Everyone has to face this question in their own way.

I haven't a clue about this. But, a universe without life seems rather pointless. But, none of us has a real choice about the matter. As you may know, I almost died when I was born. I had collapsed lungs. My mom's doctor tried a brand new (at that time) experimental treatment...helium to cause my lungs to inflate so that I could breath normally. That worked. But, I might have been one of those who were not as fortunate. So, I could go on living. So, one day, we find ourselves living (with only in a vague memory... in my case when I was in the 1st grade ... the second time ... the first time was so bad that I simply don't remember it.)

My best friend in high school drown in a pool at a Student-Council party with me and dozens of others being near by (at the edge of the pool). He apparently stayed at the bottom of the pool during underwater tag. Someone said, "let's eat." So, we all jumped out of the pool (and left Roger at the bottom of the pool who died there.)

When I conducted the ocean-education trips, I had a student die on a scuba dive. I almost died myself on a dive (when my air ran out at 50-ft underwater.) So, my student died while I kept on living. Why didn't God intervene in these cases? They were not evil people who were somehow out of God's favor.

I don't really trust those who say that they know what life is all about. Maybe they do ... maybe not. In most cases, those who say that they do want to con you into giving them some of what you already have so that their life is better (at the expense of your life being worse.)

Maybe some day we will find out...but for now life is a path that leads to an unknown destination. Or, maybe we just go from one life to another without any memory of what went before? All we do know is that we are people ... not just animals. We have a unique ability (among animals) to know some amount about truth (what we call scientific truth) so that we can act better on that better truth. It's better than being an animal that knows nothing about truth and who is a complete victim of whatever befalls them.
(←Grandma Jerry and her bulldogs w/ dad)
As you know, my mother's cancer was not discovered until it was much too late for any kind of treatment that had a chance of leading to remission. Barbara's cancer was discovered at a very early stage. So, her treatments had a high chance of being successful. She did not delve
into the world of alternative medicines. She did what her doctor's recommended. She is a statistic of one ... the statistics of the rest of the pack of cancer victims did not really matter. She did what seemed best. It worked out well for her. My dad's cancer was brought on by his smoking (as well as his other lung diseases). In the end, he too could not take advantage of today's medicine. He lived at an earlier time. He tried to find fault with his doctors and his new wife .. but they were not the cause of his suffering and death. None of us will live forever ... at least not as we live now. We all have to deal with each day ... a day at a time and be grateful that today went okay or well.

We have a lot of cancer in my side of the family. I have friends here who have a lot of trouble with heart disease. I don't have that problem...that not part of my genetic profile. Others have a lot of problems with kidneys. I have friends who have had lots of organ transplants. In no time, they are back to normal. Most everyone I know accepts life at it comes ... and trusts doctors as being the best way to know what to do when adversity strikes ... as it must strike all of us some day.

Simplicity

My favorite book of all time is The Hobbit. One reason: it's one book that I can say I've actually read through about a dozen times from start to finish, sometimes silently to myself and sometimes aloud to students. Second reason: the character of Bilbo. To this hobbit who loves home but decides to pull up some distant aspect of himself and go adventuring, I can definitely relate. Three, the story for me never gets tired. It's Tolkien's talent of writing, especially his craft in the transformation of Bilbo, that makes the story special--not a children's tale at all, but a metaphor of the pragmatic nature of courage and the passing of beauty from the earth that is worth fighting for.

One of my favorite moments in The Hobbit happens near the beginning. Though the night before Bilbo is visited by a rag tag group of dwarves who convince him to join their quest to win back gold stolen from their homeland by a dragon, Bilbo oversleeps the next morning, missing the dwarves early start. By this, Bilbo convinces himself the night's planning session was a dream. He spends the morning cleaning house, but does not clean the mantle where a note from Gandalf, a wizard, admonishes Bilbo to join them by a certain hour with bags packed and ready to leave a few hours down the road.

Since Bilbo never sees the note, the time slips by. Gandalf shows up to bring him to the appointed place where the dwarves await him, but Bilbo has not packed. At that moment, Bilbo makes a choice, essentially between two things: his creature comforts and the adventure of a lifetime (as the cliche goes.) He chooses adventure, running to meet his new companions without even the most essential items. Not even a handkerchief.

When I started compiling my list of items to take to Houston for the transplant, I realized we'd have to rent a trailer in order to fit everything in. The apartment is furnished with everything a girl could need, but I wanted more. My special pots and pans. My special chair. My own towels and bedspreads. It would be like a mini-move to a new house.

That's when I remembered the story of Bilbo. How I admire him for going light on his journey, even though he was kind of forced to do so. Then I looked around my house. Did I really want to take with me all this stuff that I had grown so weary of? I mean, possessions. None of them seem important any more, since cancer. There was so much more to life. My family, for one. Friends. And the peace of a beautiful spring day. Worth fighting for and getting out into.

So, I decided to choose simplicity. To test myself with hobbit resolve. Casting off the things that may be holding me down and keeping me from moving on into a more adventurous space of choices. To be free of things.

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.