Deepest Chambers of the Sea

Well, as you know, this post finds me on vacation. It seems unfair to fail to mention all of the great things that have happened in the past week: Don's parents and their lovely anniversary party, Lacey's 18th birthday, the first day of summer. Unfortunately, it was tempered with some very difficult moments, of which I will reserve explanation for another blog.

We left our house at 9 a.m. Saturday morning -- or I guess I should say, we TRIED to leave our house at that time. "Hey kids," I said happily, "Wave good-bye to the house!" "Good-bye, house," they echoed excitedly. Don turned the key to start the van and -- NOTHING. He tried again -- UH-OH. The van was packed so tightly with people and stuff that you couldn't possibly shove a toothpick in with us, and now it would not start. To make a long story short, we called Autumn back to the house to jump the battery, then had a picnic of sausage biscuits and orange juice on the Auto Zone parking lot while Don purchased and changed the battery. (Note to self: No celebration until we actually LEAVE the house next time!)

The trip went well, all things considered. The hotel was equipped with an indoor pool for the kids and wonderful handicap-accessible roll-in shower (complete with fold-down shower seat!) for me. I sat on the bench for a long time, letting the warm water flow over me. Today passed in a whirlwind of travel. The kids traveled very well, with very few difficulties (unless you count convincing Zach that he could NOT bring a piece of bacon from the restaurant in the his pocket to "feed the fish"). We arrived at the house around 3:00, looked around, and then Don and I headed up to the airport to get Josiah. I was so happy to see him that I couldn't stop crying. The airport was a couple of hours away, and his flight was delayed, and Don took an unplanned detour on the trip home. It was 10 p.m. by the time we got back to the house.

By this time I was hungry and exhausted, but still determined to see everyone who arrived after we left for the airport. Eagerly, I sat down on the bottom step of the lowest level of the house, where our bedroom for the week is located, and began the slow, agonizing scoot-and-pull routine to get up the steps to the main level of the house. As I reached the top section of the curved staircase, my strength began to fail me. Two days of hectic travel and the week of non-stop preparations finally got to me, and I sat there exhausted, unable to go any further. Andrew and Josiah were below me on the steps, looking up in horror as I tried and failed to pull myself up another step. Above me, Mom and Aunt Mim fought back tears from the kitchen table as they watched my struggle. Desperately, I willed myself up the last two steps and dragged myself across the carpeted floor to the landing where I tried in vain to pull myself up to get in my chair. Josiah and Andrew finally joined me on the floor, helping as usual to normalize the absurdity of my life. Amy even snapped pictures of us smiling from the floor. Someone brought me a drink and a piece of pizza. Later, when I finally found my second wind, Don and Tabitha helped pull me up to get in my chair.

No one spoke out loud about my public humiliation, but I'm sure it will be the subject of many whispered conversations henceforth. I found myself wishing (like so many times in my life) that I could just be invisible. Then no one would have to see me dragging myself up steps or pulling my useless leg across the floor just to be with everyone else. Maybe I could I just be a spirit, and that way I could float effortlessly from floor to floor or down to the ocean like everyone else -- or a delicate butterfly, so they could smile as they watch my colorful flight from room to room. Instead, there I was, trying hard not to cry in front of my whole family tree who have assembled here for a vacation, not a circus side show. (Come, see the bald-headed woman with the tumors on her head as she makes her way up the carpeted steps to the main level of the house. It's horrifying! It's amazing! I promise you, you've never seen anything like this before ... only $2 to see the crazy woman butt-scoot up the stairs!)

Later, when they gathered on the screened porch to listen to Josiah's songs, I watched them for a while through the glass door. I wanted to memorize them in their happy repose for later, when life intervenes and scatters us all again. While the final strains of "Believe in Heaven" played, I returned, alone, to the steps and dropped quickly to the floor so that no one would have to witness my equally agonizing descent. Down, down, down to the ground level floor I scooted, to where I could hide in my bedroom for a good, long cry about the sorrow of children growing up, life winding down, and the extraordinary struggle that my body requires to do things that everyone else takes for granted.

Still, I am here, and the view from the level above me is utterly breathtaking. Like all the beautiful things in my life, it is worth the struggle to see it -- to feel it -m to experience this moment in time with all of us together in a place that usually only exists in my dreams.

:-) Sharon

Slowly but Surely

I'm finally starting to emerge from the fog of chemo. It's funny, but the first signal that I am feeling better is usually a generalized crankiness. I become very disgruntled and dissatisfied with lying around, and that's when I know I am coming back.

My kids are notoriously clueless about the depth of my suffering. This is good in some ways, but maddening in others. Here's an example from Monday: I had been vomiting all day and felt like I was glued to my chair. I hadn't even dressed beyond a nightgown. Smells and noises were absolutely excruciating. I had already sent Don to the shower after he went for gas for the lawn mower because I could smell it all over the room and it made me nauseous. For some reason, Ariel and Zach could not get along all afternoon. Every time I turned around they were bickering again, Zach in the doorway right by one of my ears and Ariel on the couch, right by my other ear. Finally exasperated, I said, "Ariel, you are almost 12 years old and Zach is almost 10. You are both old enough to have some respect when someone is not feeling well!"

Ariel looked at me with sincere confusion on her face and replied, "Who's not feeling well?"

ARGHHHHHHHHH! You are not going to find much sympathy around here for my plight. My life doesn't afford much compassion, either. I have been insanely busy since my treatment on Friday. We came straight home, grabbed the kids, and went to the premiere of Autumn's play "Alice in Wonderland". She did a terrific job as Alice. (It's funny because Andy and Josiah have always compared her to Alice due to her natural naivety.) In fact, all of the actors/actresses were well-suited for their parts. It was a very enjoyable escape, which is exactly what I like in a play or movie. After the play, we joined the Wallaces for dinner after taking the kids home.

On Saturday, I woke up about 5 a.m., vomiting profusely. I was worried about our trip to North Carolina, but my stomach finally settled enough to leave the house at 8:30. We picked up Daddy and Virginia for the trip, and Andy and Tabitha went separately in her car. It rained quite a bit, so we had the picnic in my aunt's garage, but it was still a great day. The food was delicious, and we spent time with my dad's sisters and brother and their families. That trip together each year means so much to me and Daddy. I am glad that we have made it our tradition to go. There's something so peaceful, so continual -- if that makes sense -- about returning to the place from whence we came. I love hearing Daddy's stories about the mountains and the family. It's a wonderful experience. (On a funny note, we used Don's Garmin to map our route -- even though Daddy knows those mountains inside and out, we thought the Garmin might know the shortest way. Well, the Garmin makes no allowance for the curviness of the roads, and WOW did we ever take some curvy roads. One of them I remember all too well from my youth when Jenny and I got car sick so easily. It's called "Straight Branch", and whoever named it that has a very sick sense of humor. It's easily THE most crooked road I have even seen. It's incredibly beautiful, though, even in the rain.)

I laid around all day on Sunday, sick and miserable. On Monday, I made the trek back to Knoxville for my Neulasta shot -- which, of course, ushered in a an even more miserable 24 hours of aches, fever, and chills. In spite of this, I went out Tuesday (yesterday) to finalize all of the plans for this week's anniversary dinner: the cake, the flowers for the altar, the announcement in the newspaper, the final menu, the guest book and decorations for the main table. We also gathered up x-rays for Eric and Lacey's visit to the oral surgeon today to make preparations for them to have their wisdom teeth out later this summer. Additionally, we took the van to the car lot for more service before our beach trip next week.

Whew! This afternoon, I finally lazed around for a while on my chair while Don watched cartoons. He likes the "oldie" cartoons that come on one of our cable channels in the afternoon. Usually Zach watches them, too -- a respite from the afternoon heat. Today, Zach had gone to the pool with Lacey, Ariel, and Derrick, so Don was watching them alone. I watched him for a while, and it occurred to me how very much I love him. He is my best friend, my companion, and the one person in the world who truly understands the depth and breadth of my battle. I just would not want to walk through this world without him.

About 4:00, he went out to mow. It was a beautiful day here, not so humid, so I jazzied outside and sat under a shade tree with my quilt books to plan and dream. (I don't know if I've told you this or not, but Don bought me a new sewing machine last week. I've never owned a new one, just a persnickety old hand-me-down that has served me well through years of sewing. So, with my new machine, I am going to get serious about my goal of making each of the children a full-sized bed quilt. If I machine-piece the quilts, and hand-quilt them, I should be able to make some progress, right?) It was so nice and peaceful in the afternoon shade that I had a hard time dragging myself back into the house.

So, overall, I think it's safe to say that the worst of the chemo effects are behind me. I am very, very weak, but my strength is slowly returning. While I was at the hospital on Friday, they scheduled my tests: CT scans and MRI on July 7th (the day after we return from the beach), followed by results on July 11th. The "master" plan is to get me to a sarcoma specialist, armed with these results, to get an expert opinion on the best next course to take. But for right now, the plan is built around living: the 50th anniversary dinner, Lacey's 18th birthday, our first family vacation in 3 years. The kaleidoscope of life keeps turning, mixing the brilliant hues of happiness and laughter and celebration with the darker shades of sorrow and pain and suffering to create a more breathtaking display of colors than I could ever have imagined. I can't wait to see the scenes unfold, one by one, against the deep blue summer sky of my life.

:-) Sharon

The Great Wall of Dread

Well, here I sit again staring at it. I don't want to go tomorrow; I just don't want to do this again. I'm okay until about 24 hours before the appointment, then the anxiety begins. It's so very hard to submit myself to these treatments over and over, knowing how sick and exhausted and crappy I will feel when the effects kick in.

My appetite is completely gone today. I don't guess it's any great secret that food used to be one of my great passions. I turned to it (foolishly) for every emotion: fear, frustration, exhaustion -- even happiness! And my body paid a heavy price for this covert relationship. So I suppose there is some poetic justice in the fact that food is now a frequent repulsion to me. I always thought it would be wonderful if I could just lose my appetite, but it is actually a terrible feeling. I get so hungry, and yet nothing appeals to me. I choose something that seems appetizing, but when the plate is placed in front of me, I cannot eat more than a few bites. Finally, in desperation, I force myself to eat something, then hope and pray that it stays down ...

My bp was also up a little at the doctor's office today: 130/92. My bottom number has been running 78 - 80ish, so I guess this is another sign of the stress that I am feeling.

I know, I know: this is the last treatment -- and, believe me, that is the ONLY way I might be able to drag myself over there one more time. Autumn's play is tomorrow night, and Don and I will travel to North Carolina on Saturday with Daddy. And, yes, I AM going to both, even if I am sick and weak and miserable. I'm not going to let cancer rob me of these beautiful moments of my life.

I just want to get this behind me and get back to LIVING!

:-) Sharon

Three Years and One Dip Later ...

June 4th was the three-year anniversary of the day the cancer shattered my right femur and put me in a wheelchair from which I have never fully escaped. It's really hard for me to think about myself during that time; I was absolutely terrified. The pain was terrible, the doctor had (correctly) predicted that the bone would never fully heal, and I was left to adjust to a hospital bed and to teach myself to use a walker because the pt group that handled my case managed to see me 4 times out of 18 scheduled visits. Don and I didn't know what we were doing carewise -- all I knew was that I NEVER wanted to hurt like that again, and avoiding pain became my new goal in life. Our home was not the least bit wheelchair-accessible. We had to add a driveway in the back yard for the ambulances and our van in order for me to be able to safely leave the house.

It was, of course, the gateway to some very dark chapters of my health. Certainly in retrospect it is nowhere near the worst of the many ordeals I have experienced the past three years. Still, it has the distinction of being the first real deterioration of my quality of life due to cancer. It was a harbinger of things to come, and the abrupt end of any innocence that remained about the gravity of my cancer diagnosis.

Since it was the anniversary of "the fall", I decided it would be the perfect day to face my fear of getting into (and OUT OF) the pool again. So, I put on my bathing suit and Don drove me down to the neighborhood pool. I didn't have any problems getting in, but I could tell that my legs are weaker than they were when I swam last summer. The water was still somewhat crisp, but not bad if I kept moving. I walked, did some exercises, and swam for a whole hour. Then, with the help of my trusty cane and the pool rail, I climbed out without incident. Yahoo!

Yesterday morning, every muscle in my body ached. I was actually happy -- no, not because I was suffering, you bunch of smarty-pants! I was happy because this proves just how beneficial the pool will be for me. Can you imagine how good it is for my body to be off of the chair, in the water, and in constant motion for one or two hours? I can also tell that it still has psychological benefits, too, because I find myself craving it again already. I was hoping to go tonight, but life intervened.

We have been desperately seeking a reliable used car in our price range (haha) for Lacey's 18th birthday in two weeks. We have also been looking for a replacement for Autumn's blazer, which has no air conditioning AND broken power window controls -- very unsafe in this heat. Well, believe it or not, we found BOTH of them one today. We had asked my FIL to check out a car that a man at our church had for sale on his lot. Before he could contact him, the man returned our call this morning. Don and Eric went to the lot, met the man's partner, test-drove the car, made an offer that we could afford, and purchased the car. A short while later, my FIL stopped by there, only to be told by the partner (who doesn't know any of us) that the car had already sold. So he told my FIL about a great deal they had on a one-owner car that was very reliable. When FIL arrived at our house to tell us about the second car, he learned that Don had already purchased the first one. He then recommended that we purchase the other one, too, as a replacement for Autumn's vehicle. So, Don, FIL, and Autumn went back to the car lot, test-drove the second one, and purchased it, too. It has working air conditioning, and -- get this -- manual-crank windows. Autumn was so happy!

On top of this, we are dealing with our crisis-du-jour: one of our kids stuffed a bunch of straws down the sink drain. Don, unaware of the straws and having tried everything he could think of to fix the sink, finally took a plunger to it. The straws came out, but the pipes under the sink sprang a leak. Additionally, the dishwasher is making a terrible racket when the water drains. SO -- the plumber will be here tomorrow morning to rectify our problems. And, yes, I threw away every straw in the house.

So, the morning of car purchases combined with the afternoon of appointments and errands, the kitchen conundrum, and the stifling heat completely sapped my energy. It's probably a good thing that I didn't go this evening anyway, because an unexpected storm came up without warning. Since I can't get out very quickly and my wheelchair has a metal frame, I don't want to get caught in the pool in inclement weather.

Life has been very hectic this week, and I can't predict that it will settle down very much during the next few weeks. Still, I'm thankful for the fact that the chemo has not slowed me as much as I had feared. I am looking forward to getting that last treatment behind me next Friday, so that I can concentrate on enjoying this very busy month of our lives.

Maybe I can live hard enough and happy enough to put the cancer completely out of my mind for a while. Maybe, instead of trying to avoid pain, my new top goal can be to concentrate on FEELING every minute of life.

I can try, right?

:-) Sharon

Great Expectations?

It's been one week now since my last chemo treatment, and I find myself weary. Overall, I can't really complain about the way I've felt this week. After a day (Sunday) of weathering the Neulasta side effects, I started feeling a little better each day. We did have our cookout on Monday, with 30 guests, and it was a fun afternoon for all of us. I went to bed that night exhausted, but with a smile on my face because I was so happy that it went so well. I was able to eat one of Don's famous burgers, and even a hot dog later on in the evening. (And believe me, hot dogs are not something that I chance if my stomach is feeling "iffy" -- a throwback to childhood days when the traveling carnival was in town. I'll spare you the details. Suffice it to say that I am VERY careful what I eat on the days I feel nauseous, because I don't like vomiting chunks of food. Okay, okay, I'll stop now.)

I don't know if I mentioned this in my blog or not, but I have been downright paranoid that this cycle of chemo is not working because I have not been nearly as sick as I was when I took the Gem/Tax treatments. I mentioned this to the doctor several times last Friday, asking him if I'm not miserable, does that mean it's not working? He finally looked at Don and said, "Mr. Leming, here's what I want you to do. Whenever you see that she is feeling really well, reach over and kick her once in a while so that she can feel like she's suffering."

Hilarious? Yes, but it begs the question: have I learned to expect / accept suffering and misery? Has it become acceptable to me? Do I rail against it as hard as I could, or do I just scoot over and let it cozy up beside me? I don't want to think that I have "dumbed-down" my expectations to the point that misery is okay with me. And this begs another question: do I work as hard as I could at improving my health, especially my mobility? As you know, I stopped my "cane walking" after I was diagnosed with cancer in the OTHER hip and told that if it broke there would be no repairing it. The thought of suffering another fracture terrifies me. But have I let fear overtake me to the point that I am not as mobile as I COULD be? The pool opened a week ago, and even though I'm not supposed to frequent public pools until I'm past my nadir (low point for blood counts) AND the temperature hasn't been hot enough to truly heat the water, I'm afraid that the real reason I haven't gone yet is because of fear. What if I get in and can't get out? (Hey, it's happened!) What if I get in and it hurts? Or it's cold?

AAARGH!!!! Cancer has made me a giant chicken. Do I go to such great lengths to avoid suffering that I avoid living, too? I hope not! I have to be willing to get out of my comfort zone, or else my universe is shrunken to this house, this room, these walls. Do I want summer to pass without my beloved pool, where my body isn't crippled and I swim like a child? Of course not. Yet I sit here, feeling grouchy and wishing I could do more physically. I get frustrated with the kid-and-husband-done house cleaning, and I long to be able to do it myself again. How I would love to clean up a storm, clearing out dust and scrubbing until the whole smells like Pine Sol and even the air feels crisp and clean! When I was working, we always cleaned on Saturday morning while Don worked a half day at the factory. I would get on my hands and knees and scrub the tubs with gusto. By the time he got home, the house was clean and the kids and I were relaxing.

I know: I miss strange things. But the fact is, sometimes I just miss EVERYTHING about being normal. I never realized the beauty of an ordinary (and often hectic) day, filled with work and errands and housekeeping and running the "mom taxi". Somebody stop me before I start wallowing in self pity! You know, whenever my kids worry about leaving me to pursue their own lives, I tell them "this is your season for living". Well, so far, it's still mine, too, and I need to concentrate on the things that I CAN do, and on expecting GOOD things to happen instead of more suffering. Sure, the suffering may come, but there's no need to set it a place at the dinner table.

Here's hoping that all of us can expect many great things this summer.
:-) Sharon

Pomp, and Circumstances

After I wasted a good deal of time crying and dreading and obsessing about it last night, I had my second adriamycin treatment this afternoon, after a morning of blood work, nurse's assessment, doctor's visit, and pre-meds. The actual injection of chemo is probably the shortest part of the whole ordeal, but all of the other things are necessary, too. My blood counts are still good -- Yay! I have to go to Knoxville again tomorrow for my Neulasta shot. The Neulasta shot, while necessary, packs some very unpleasant side effects. Since it causes my body to build white blood cells, sort of like my body is fighting an infection, it causes the same kinds of symptoms that come with flu -- body aches, fever, chills, general feeling of malaise. This means that Sunday should be a fun day for me! Hopefully, that will be the end of it, and I will be ready for our graduation celebration, a cookout here on Monday afternoon with around 3 dozen guests if everyone shows. We will have Don's famous burgers with all of the trimmings, cake and ice cream, and homemade lemonade made just the way I like it (MUCH too sweet, lol!).

And, YES, I also made it to the graduation ceremonies this evening. We got home from chemo at 5:15, took a quick round of pictures before Autumn and Lacey left at 5:30, then I changed into my dress and got ready, finally leaving for the Expo Center at 6:30. It was crowded, and there was no handicapped parking remaining, so Don and Zach dropped off the rest of us and went to park. Instead of a ramp, they have a very ssssllllloooooowwww lift. Thankfully, I had requested reserved seating due to my health/wheelchair, and they so very kindly accommodated us by roping off a section on the concourse level with a space for my wheelchair and a dozen more seats. They even assigned someone to "guard" the row for us until we arrived so that no one else would take it.

I sat there victoriously, thinking about the fact that the girls were 10 years old when I was diagnosed with cancer. Who knew if I would live to see this day? Well, guess what! Cancer, are you listening? I'm STILL HERE! You didn't keep me away from this celebration. Take that, cancer, you evil cartoon villain! (Curses, foiled again ...) Yes, I had a whole day of chemo-related events, but I had graduation, too. And I enjoyed every precious moment of seeing my beautiful daughters walk across the stage into young adulthood.

And so ends another ride on the long, harrowing roller coaster ride that is parenthood. You climb on tentatively, having heard that it's a wonderful trip but still a little nervous of what you might encounter. Soon the ride is underway and you find yourself strapped in as your life careens up and down at breakneck speed and through stomach-churning loops, leaving you dizzy and frightened at times and yet deliriously happy, too. There are times when it moves so fast that the car tips in a curve and you think the whole thing might fly right off into the abyss, but it miraculously adheres to the track. And when you finally arrive with a jolt at the station, lurching dizzily onto the platform, you find yourself wishing that you do it all over again.

Sadly, like all of life, you cannot. Andrew, Josiah, Autumn, and Lacey will not be children again. And all of the things that I cherished about their childhood are only memories now -- Andrew with his race cars, keeping holes in the knees of his pants and even his pajamas because he spend so much time on the floor rolling his toy cars; sweet, stubborn Josiah, who liked to have things his way and insisted that his school projects and all of his extra-curricular pursuits be done to perfection; Autumn, who was ridiculed once by her fifth grade class when they were told to plan a party and she innocently suggested flowers (instead of rock stars, strobe lights, etc.); tender-hearted Lacey who came to live with us just after her 10th birthday, rough around the edges because no one had taken time to help her with manners or ladylikeness. Sho longed for a forever family but sorrowed still for her real mother, who had promised to return for her one day.

Those days, like all days, are never coming back. Though we can visit them in dreams and flights of fancy, they are gone forever. And so we move on into the future, which is better than the past anyway because it's still attainable, ripe for the picking, ready for another roller coaster ride ... or a cookout ... or maybe, for the moment, just a long night's sleep -- where, if I'm lucky, I'll be met with a delicious dream of children playing and laughing and dancing all around a happy, healthy, beautiful me in the sweet innocence of yesterday.

:-) Sharon

Strawberry Jam

I have spent the past two days in the land of the living. Don, Jenny, and I spent two days slicing and mashing and cooking and canning strawberry jam. It took every ounce of energy I had and then some! I was so completely and gloriously immersed in the simple joy of it that I hardly thought about cancer at all. To me, that is the ultimate of victories: the moments that are so wonderful or so consuming that the thought of cancer and pain and fear and disability are far from my mind.

Still, there is that part of me which is ever cognizant of the fact that this joy -- this struggle -- this LIFE -- could come to a screeching halt at any time. Not only do I realize that the clock is ticking on the doctor's estimated expiration date (THREE brief and precious months have already passed since he told us his "best guess"), but I also understand the truth about late stage cancer. It can take a sharp and dramatic turn for the worse, often without warning. And then the life that hangs so fragilly in the balance loses it valiant fight against the monster. All of the hope, the struggle, the love of family and friends, and all of the desperate will to survive cannot stop its terrible progression or write a happy ending to the story.

But even if there can't be a happy ending, can't there still be a happy now?

In pursuit of it, I strive to slurp every last drop of joy out of every day. I leap daily without hesitation in the deep, bubbling stream of life, and when I am too exhausted to swim any more, I sit on the sidelines and bask in the happy memories of those moments spent, not fighting or suffering or worrying, but LIVING. I guess it's my way of sticking out my tongue at the cancer, of announcing to the universe that "I have cancer, but it doesn't have me!' (Remember the old Alka Seltzer commercials?)

Should I pace myself a little better? Probably. Work harder on my physical therapy and constant recovery? Undoubtedly. But most of the time I choose instead to simply take each day as it comes, filling the hours with as much activity as my poor old tired body can withstand. Then I retreat to my chair to ease the pain in my back and to manage the mundane, ordinary affairs of the day. And when I fall into bed much later than I should, exhausted and achy, I drift off into the happiest of dreams where I am healthy and beautiful, young and whole.

It may not be the smartest way to live, but it makes me very, very happy.

:-) Sharon

P.S. --Speaking of happy, I got good news from my blood draws today. My white and red blood cells counts are both great. Yippee!

Happy Mother's Day

Mother's Day is almost over, but I don't want to miss the opportunity to say "thank you" to everyone who wished me a happy, carefree, healthy day -- and to my 9 beautiful children, who bestow upon me the supreme privilege of calling myself a mom.

Thanks to some nasty weather and painful leg cramps (forgot my potassium pill last night), I didn't make to church this morning. I did, however, make it to my mother's house for a few hours this afternoon. My sisters cooked, and we had a wonderful time together. I forgot my camera, but hopefully I can add some photos after my sister sends me copies of hers.

Here at home, we celebrated yesterday. Early in the day, I took the girls to have their hair trimmed and to Wal-mart for our annual swimsuit search. There's no place in the world quite like Wal-mart on a Saturday, especially the day before a holiday that is dependent on men and children purchasing gifts. FOUR HOURS later, we arrived home. I was exhausted. Those girls sure do love to shop!

Later in the day we had a cookout. Don grilled steaks and made his delicious homemade yeast rolls. My in-laws joined us so that we could celebrate with Don's mom, too. The weather was so beautiful, and the food was so good. They surprised me a beautiful bracelet and some other gifts.

Overall, I have been feeling very well lately. I do have a sore throat and swollen lymph nodes, which I hope is not indicative that my blood counts are sagging. I will have my bloodwork done one day this week. I need to SLOW DOWN a little and not overdo quite so much. I'm like a kid turned loose in a amusement park, trying to do everything all at once. When I feel well, especially after I've been down, I seize every opportunity to be active and productive and happy.

Life is just so tempting ...

:-) Sharon

Lo and Behold?

After several really sick days, I felt wonderful today. I went to lunch with my home-health crew; since they are not coming here to see me these days, we wanted to catch up on everyone's lives. Don and I went to the mall to get a battery for his favorite watch, and on the way home I noticed that the farmer's market had strawberries! One gallon later, I came home and baked a strawberry shortcake. Then I "jazzied" outside to get the newspaper and it was so beautiful outside that I sat out in the shade to read it. My roses are coming out in front of the house and everything is so deliciously GREEN.

I'm really surprised to be having such a good day so soon after a tough chemo treatment. Since I had been feeling terrible the past two days, I fully expected to hunker down and weather a couple of rough weeks. (Yesterday, I didn't even make it out of my gown or off of the chair except for bathroom trips.) So -- is this a fluke? Or could it be, could it maybe be, that this treatment won't pack the usual side-effect-laden punch? (And if it doesn't, does that mean it isn't working?)

I know, I know: I need to stop questioning it, and just enjoy it!

Strawberries, anyone?

:-) Sharon

Why Not Now?

When I told my oncologist at my appointment Friday that I wanted to resume the single-agent Adriamycin chemo as soon as possible so we will know once and for all if it's effective for my tumors, he said, "Do you want to do it today?"

At first, I was aghast, and he laughed at the look of stricken horror on my face. He said I could wait until next week or whenever I am ready, mentally and physically. But I thought about the fact that gas is SO expensive and Knoxville is an 80 mile round-trip -- and I realized that if we scheduled it for Monday I would no doubt come home and worry/obsess all weekend about it. (Sometimes "doing" is better than "dreading"!)

So -- I had my first treatment of Adriamycin today, along with a pre-med cocktail of decadron (steroid), benadryl (anti-allergy), aloxin (anti-nausea), and ativan (anti-anxiety). Our nurse was extra nice, and made me feel at ease throughout the process. My port cooperated so they did not have to access any veins.

Yahoo! I'm so happy to have it behind me. I will need a shot of Neulasta on Monday, and blood work next week, but the actual treatments are 3 weeks apart. This means that 2 and 3 are scheduled for May 23rd (yes, graduation day) and June 13th (opening of "Alice in Wonderland").
So far, I am feeling okay. I'm tired, but it's been a LONG day. No nausea yet. I know the difficult days will come, and I will deal with them as they arrive. There's no use worrying into the future, right?

Oh, but there is one more thing that I haven't told you. I've been having terrible back pain again, so bad at night that is hard to sleep; but today the steroid treatment made the pain stop completely. You may remember that this was the reason that the doctors were SURE that I had a spinal tumor when it first paralyzed me in December 2005. They couldn't find it (because they were looking in my lower spine, rather than at the thoracic level), but they were convinced it was there because of 1- the paralysis, and 2 - the fact that the steroid eased the pain when nothing else touched it.

Is it back again? I don't know. I'm just saying that the symptoms are there. We will schedule an MRI for one day next week. Here's hoping that I'm just over-reacting to the pain.

Still, we have reason to celebrate tonight. One cycle down, two to go!

:-) Sharon

One of THOSE Days ...

Today I had one of those plunked-on-my-chair-in-my-nightgown days. It was bound to happen -- I guess it's a "hangover" of sorts after the busy-ness and excitement of the past couple of weeks. I was just tired and achy, so I vegetated on the chair and worked on my calendar of upcoming family events. Here's an overview:

May 2 - Oncologist appointment.
May 11 - Mother's Day (no plans yet, but need to do something special for Mom and Don's mother, plus the kids will want to plan something for all of us together).
May 23 - Autumn and Lacey graduate from high school.
June 7 - Daddy's birthday, which he and I actually celebrate with Father's Day, when we make our annual trek to Ashe County, North Carolina, where I was born and much as his family still lives. It's a wonderful chance to spend time together, see people that we love, and visit one of the most beautiful places in the world.
June 13 - 15 - Autumn's performance of Alice in "Alice in Wonderland" by the Rose Center Summer Players
June 15 - Father's Day (trip to NC!).
June 21 - Don's parents celebrate their 50th anniversary. We are hosting their anniversary dinner, followed by a fellowship after the Sunday evening service at church on Sunday, June 22.
June 28 - Leave for VACATION on the Outer Banks!!!!

I'm going to need a LOT of energy for all of those things, especially if I am managing chemo side effects at the same time. It will definitely require some careful planning, strategic delegation, and maybe a small miracle or two! It will also give me so many precious opportunities to make some memories with the people that I love.

:-) Sharon

One Sunny Saturday in Spring

I know, I know -- I have not yet blogged about my trip to Hugfest. Don and I met wonderful people, had crazy this-could-only-happen-to-us adventures, and learned a lot about the research that is being done 'round the clock to find a cure for LMS. It was a grand experience, both exhilarating and exhausting, and I am so glad that we were able to go. It was a real stretch for me physically, and I was really out of my comfort zone. (But let's face it, my comfort zone is a lift chair and a bedside commode, so it's basically limited to the inside of our home. This means that if I never go out of my comfort zone, I never go out, period. And that's simply not acceptable to me.) I'd like to give the details of our trip -- parts are humiliating, and parts are hilarious -- but it would make for a long blog entry. Maybe I'll write it all down and add it to my "thoughts" page one day.

Anyway, I really want to talk about today. We have been working on a giant project in our front yard, so Don and I went to our local giant home improvement store to buy landscape lighting. While he shopped for a few other items, I headed for the garden section, where all of the beautiful bedding plants and hanging baskets are located. Happily, I wandered through the aisles of hanging baskets, gazing up at them from way below (wheelchair-level), enthralled with their simple beauty. I was trying to choose two baskets, one for each end of the porch. I was so happy that I couldn't stop smiling. I just couldn't shake that kid-at-the-carnival feeling which kept reminding me, "You're here; you're alive; it's spring, and we're buying flowers!" I proudly brought home my New Guinea impatiens and the landscape lighting to complete our project. Our yard looks so nice now!

I love the smell of the just-mowed and oh-so-green grass, the little flowers that pop up everywhere, and the way our whole family migrates outdoors because it's impossible to resist the warm sunshine. I remember on those cold, dreary winter days when I longed for a day just like this one -- it's finally here, and it made me feel so happy and carefree today.

I'll be heading to the oncologist's office on Friday (May 2nd) to schedule my next round of chemo. My break will be over, and it will be time to fight again. But right now, I think I'll roll to the front door and sneak one more peek at my pink and orange flowers and the delicate white landscaping lights that now welcome us home at the end of all of our journeys.

After all, there really is no place quite as comforting as home ...

:-) Sharon

It Finally Happened ...

The moment that had tormented me in recent dreams.

Don and I were about half-way to the airport to pick up our son when I realized that my head felt unusually cool ...

I raised my hand to my head to adjust my head cover ... and it wasn't there.

In my hasty, hectic departure, I completely forgot to apply my head covering. No one here noticed because they are accustomed to seeing my head in all of its grotesque glory.

So what now? I could not go into the airport like that! We were too far from home to come back for it. After a moment or two of full-blown panic, I remembered that there was a dollar store near us. I called ahead and asked them to bring a bandana or scarf or hat of some kind to the register for Don to purchase. He went into the store and $2.19 later he emerged with a 2-pack of blue bandanas. We continued our trip to the airport ...

I've decided that this is utterly ridiculous. While I am not prepared to go around with my head exposed to the world, here it is for your viewing pleasure:

(Don't say you haven't been warned ...)

So, there you have it. It's ugly. It's scary. It's downright disgusting. But guess what?

I'm alive! And fighting hard to stay that way ...

:-) Sharon

P.S. -- Can you see the tumor above my eyebrow? It's the same one that I mentioned several months that I can feel in my eye socket. It's growing, so it will need to be addressed in the near future.

Gathering Rosebuds While I May

Hello again!

You will be happy to hear that the reason I haven't blogged for a full week is that I have been feeling much better! When I feel well, I do a lot of things, large and small, that I can't do when I am down.

Don and I traveled to Nashville earlier this week to see Josiah perform live. (Other than his "live" performances in our basement, I had never seen him perform his own music.) Seeing him perform live is an amazing experience! It was a fun trip, and I was able to meet some of his great fans and re-connect to one of my longest friends -- I was going to say "oldest" friends, but that has terrible connotations, and after all, we are the same age! Lauren and her husband picked us up at the hotel and hung out with us at the concert. I guess it had been 14 or 15 years since I had seen her! She looks great, and we had a good time catching up on all of those "lost" years.

Since I did fairly well on this trip (thanks to an afternoon nap to find my "second wind" before the concert), I am less nervous about our upcoming adventure: Hugfest 2008! Hugfest is a yearly gathering of Leiomyosarcoma patients near Philadelphia. I have wanted to attend for several years now, but my health has not permitted me to do so. This year might just be my chance to actually make the trip. There are get-togethers, meals, tours of the hospital and the Philadelphia area, and an opportunity to meet both fellow LMS warriors and the researchers who work tirelessly to find a cure for us.

Hugfest is sponsored by the NLMSF - National Leiomyosarcoma Foundation, Inc.. Since leiomyosarcoma (along with other sarcomas) is so rare, less money is directed to its research than the "major" cancers. Of course, any cancer research is valuable to all of us, but it takes a long time for the new therapies to "trickle down" to sarcoma studies. Therefore, the NLMSF raises its own funds, which are used to hire and support researchers who focus entirely on leiomyosarcoma.

For those of us who suffer from leiomysarcoma, or who love someone else who does, this research is invaluable (priceless, as the Mastercard commercials say).

So, I am still here -- visiting with friends (including Janet, who came to see me today from Greeneville), spring cleaning our bedroom, spending time with our children, and going outside to frolic in the sunshine every time I can find an excuse to get out the door.

When I'm not blogging because I am feeling well, it means that I am LIVING!

Long live spring! (And all of us, too!)

:-) Sharon

What I did on Spring Break

Did you ever have to write one of those reports in school, like "What I Did on Summer Vacation"? Mine consisted of something like this:

We went outside barefoot every morning before the grass dried, and squealed if one of the cats had left a grass snake on the carport. We made houses for our Barbie dolls out of pine needles and filled our doll dishes from the spring near the swamp. Our lunch was peanut butter and jelly sandwiches with grape koolaid, served as a simple picnic on a blanket spread on the grass -- but we pretended it was our ship on a vast blue ocean. If I was very lucky, I spent the afternoon on the swing set reading the latest double-novel installment from the Nancy Drew book club. Otherwise, we spent the afternoon running foot races and pretending to solve mysteries. After dinner we would go back outside to catch lightning bugs in a jar, only to let them go because there was something so sad about them trapped inside the glass, still blinking, longing to soar again among the shadows of the darkening yard. Occasionally we caught a glimpse of fireworks at the fairgrounds on the other side of the swamp -- bright, booming lights against a Carolina moon. Way past dark, we took a bath, put on our pajamas, and slid under cool, clean sheets to drift off to sleep.

As a child, I always felt like my report was inadequate, because it seemed so ordinary compared to other students' summers. Now I realize it was nothing short of paradise ...

Fast forward to now: Here's what we accomplished on our spring break this week: 7 dental appointments - 7 eye exams - 4 doctor's appointments - 2 haircuts - 1 learner's permit -1 trip to the oncologist - AND 1 stomach bug -- yahoo!

But you want to hear about the oncologist visit, not my long-lost childhood or my hectic schedule, right? Okay, here's the new plan: Don and I are going to attend a leiomyosarcoma conference, called a "Hugfest" in Pennsylvania/New Jersey later this month. While there, we will meet the researchers and learn about the latest treatments for LMS. In the meantime, my oncologist is going to send my records to a sarcoma specialist at the City of Hope near Los Angeles. Josiah is making arrangements for my case to be reviewed by experts there.

We are hoping to get an appointment there this month. If that is not possible, we will pursue Plan B: I will see my oncologist again in 4 weeks, on May 2nd. By that time, we should be able to tell for sure if the last chemo has worked. If it has, I will go back on the single-agent treatment (not the combo!) -- adriamycin. It would be administered on an outpatient basis, every 3 weeks.

In the meantime, I will contact the neurosurgeon at Vanderbilt to schedule the cyber-knife type treatment for the largest brain met. The others, which are too small to treat right now, will be monitored by tests every three months.

I really don't want to do the adriamycin again if it's not working -- but I don't want to NOT do it if it IS working. After this, we move into the territory of trial drugs/off-the-shelf drugs, which aren't actually as scary as they sound. Off-the-shelf drugs are approved for other cancers but MIGHT work on leiomyosarcoma. Drug trials are done in phases. (This, of course, is a very unscientific explanation by a cancer patient, not a professional.) Phase 1 is basically testing to see the toxicity level of various doses on a small group of people. If no one's head falls off and no one's skin turns green, they move into Phase 2, which fine tunes the most effective dose, determines which types of tested cancers respond or don't respond to the chemo, and notes any adverse side effects. Phase 3 rolls the drug out on a broader scale to more patients of the cancers that responded well to Phase 2.

I don't know that I would ever consider doing a Phase 1 trial (to me that is guinea pig territory), but a later phase trial might be a possibility. It's often a struggle to get off-the-shelf drugs approved by insurance companies, but trial drugs, along with careful monitoring, are provided by the drug manufacturer.

So, there it is! It's not perfect, and yes, it wastes another chunk of precious time, but I feel better now that we have a plan in place.

:-) Sharon

Dreams of Reality

If you've been reading my blog for a while, you may remember me talking about the solace that I find when I sleep. In dreams, I am healthy, never crippled, and able to do things like run and climb steps. Sadly, I've been noticing lately that the cancer is creeping into my subconscious mind and subsequently into my dreams.

Let me preface my dream story with this: I had planned on sharing my journey of losing hair/growing hair with you by photos, but I lost my nerve after most of my hair fell out. The sight is so grotesque that I can't bear to expose it to the world, or risk someone copying it from my site for the sake of public ridicule. It's a painful secret that I keep to myself, hidden under a handkerchief made of fabric from Walmart's $1 bin -- hey, I'm cheap, not chic. My head is so unsightly that I even keep it covered most of the time here at home, in spite of the fact that the covering is hot and uncomfortable.

One night recently, I dreamed that Don and I had traveled with the boys by airplane to some unknown destination. Once there, I realized that my head was uncovered and began frantically searching for my handkerchief to hide the baldness punctuated by ghastly tumors. I found the boys one by one and asked them where Don had gone. They were seated at a long banquet table, eating with gusto from plates heaped full of food. Each of them shrugged nonchalantly at my desperate search for Don and my handkerchief. Finally, I sat down beside Zach and tried to fashion a head covering out of a paper napkin. Then, mercifully, I awoke.

I don't know why the dream bothered me as much as it did. Was it the vulnerability that I felt without the head covering, or something else? Maybe I simply resent the invasion of my illness into the sacred world of my dreams, where I am eternally young and healthy and not living in a twisted, shrunken, disease-ridden body. For whatever reason, the dream shook me up a little.

Anyway, my waking hours have been interesting this week, to say the least. The kids are on spring break, so we have done 4 doctor's appointments, 7 dental appointments, 4 eye exams, and 1 learner's permit. Tomorrow we have 3 more eye exams and my much-dreaded visit to the oncologist. On top of this, I've been struggling for days with a stomach bug complete with vomiting, diarrhea, and terrible headaches. Fun stuff.

Still, I concentrate on finding the happy spots in each day. Years ago, I read a book called "My Sister's Hands", which told the story about a woman whose sister died of cancer. She spent many hours by her sister's bedside, and she would massage her sister's hands or her feet -- anywhere that did not hurt -- to take her mind off of the pain in other parts of her body. Although I certainly did not understand that story like I do now, I learned something from that book: concentrate on the parts of life that do NOT hurt to ease the pain of the other parts. Some days are better than others, of course, but I try to find small joys wherever I can. Rain falling on the roof. Children laughing. Talking to a friend. Eating a cold, fruity popsicle. I find there are usually little pockets of happiness even on the very worst days. Sometimes you just have to dig a little deeper in yourself to find them.

Could someone please pass me a shovel?

:-) Sharon

P.S. -- I will update you tomorrow after my doctor's visit at 11:30 a.m.

Happy Birthday to Two

Happy 19th Birthday, Josiah!
Happy 18th Birthday, Autumn!

Today marks a double milestone for our family. Don and I went to dinner with the two of them at a Mexican restaurant, then to the mall for some birthday shopping. At home, the whole family celebrated with Josiah's traditional birthday choice, a cookie cake, and an ice cream cake for Autumn. We ended the day with a fast-paced game of scrabble, and both Andrew and Josiah outscored me by an embarrassing margin.

We've always tried to do separate celebrations for their birthdays, so that each one could have his/her choice of activities, but sometimes we do combine them. One of the most memorable was a birthday probably 10 years ago, when we had planned double slumber parties: a party at the church, followed by the girls spending the night there and the boys staying at our house. Each of them was allowed to invite six guests. We wanted to have plenty of time for all of the planned activities, so we requested on the invitations that the guests be allowed to come directly from school to our house. What we weren't expecting -- and certainly could not have predicted -- was the several inches of snow that turned school out mid-morning. I had more than a dozen kids in the house (and out in the snow) all afternoon while I prepared the food, cake, and decorations for the party.

And I'm sure Autumn wouldn't want me to tell you about the time that she threw up on several other family members in the van seat in front of her after a trip to Celebration Station ...

Birthdays in our house are always an adventure. Like all of life, it's a roller coaster ride that I enjoy with all of my heart. I hope the ride goes on and on ...

Happy birthday, sweet babies! (I guess it's too late to tell you to stop growing up so quickly.)

:-) Sharon

Easter Sunday

Happy Easter!

I really enjoyed going to church this morning. Easter has always been my favorite Sunday of the year, and I find it means more to me now than ever. We had dinner this afternoon when Andy and Tabitha got here, and everyone lazed around for a while afterwards to watch the college basketball games on t.v. Now I'm sitting in my chair, enjoying a warm fire that Don built after the sun went down and the chill set in. I'm tired, but happy. It's been a nice day.

I didn't have any luck in getting everyone lined up for a family picture, but the girls posed for me this morning in their new dresses and Zach was proud of his new suit. I also got a few snapshots of the older boys. The photo you see here of me and the girls is my favorite one of the day. You can see the other pictures we took on my photo page.

:-) Sharon

Friday's Update

You might be ashamed of me because I was not very proactive about the chemo issue today. When I called my doctor's office to find out what I time I need to check into the hospital on Monday, I was told that I am not scheduled for chemo next week and that my next appointment with the doctor is on April 4th. Now, I know I should have protested vehemently at that point and insisted on speaking directly to the doctor today. Instead, I thanked her politely and hung up the phone.

I do feel guilty that I didn't investigate further, because I really don't trust that bunch. I mean, this is the doctor who wanted to test me for meningitis when we all knew the ifosfamide could cause coma (and other central-nervous-system side effects) and had even DISCUSSED it with him just a few days before I started the chemo. This is also the office where the lady who called to scheduled my tests at UT Hospital whispered to the person on the receiving end, "I've never even HEARD of this kind of cancer." Gee, thanks. That's exactly what I want to hear from the REGIONAL CANCER CENTER! I'm not sure that these are the crew that I want at the helm of my cancer-fighting ship. But I just don't know if I have the energy to search for another oncologist right now and start all over again.

So, I admit it, I acquiesced. So sue me. Yes, I know that I can't keep taking breaks, and yes, I know that my secondary insurance is ending on March 31st. But the thought of two weeks of -- NOTHING -- is absolutely exuberating. I'm finally feeling a little better. I actually have the energy to leave the house every now and then. And I can eat fairly well, as long as I avoid things that aggravate my mouth sores.

And just to prove that our whole lives don't revolve about my health, I'll tell you about our day. Don and I took our four daughters and my mother to the mall to shop for Easter dresses. It was a major splurge on our budget, but it's something that I really wanted to do. They have been cheerfully wearing hand-me-downs for so long now, and I wanted them to have something new and pretty and picked-by-them. They all found dresses and shoes -- and a few other items here and there. (I must confess that I even bought a couple of things for myself.) I've been feeling somewhat reckless about things recently. Is it that I am rebelling against all of those years that I spent pinching every penny to keep the family boat afloat on a shoestring budget? Or am I celebrating the fact that I am alive and spring is finally here and we have four beautiful daughters? Either way, I'm sure the financial hangover will hit later in the month -- but I don't care. I loved seeing their happy faces as they tried on dresses and looked for shoes. And I realized as I watched them that they are growing up so fast, and even if I live to be 100 years old I won't always have them here with me like this.

For a little while, I reveled in the wonder of daughters and spring dresses and motherhood. Even though my bald, tumor-laden head was lurking beneath a handkerchief, I wasn't a cancer patient. In spite of our ever-shrinking bank balance, I wasn't a penny-pincher. For a few hours, I was a woman and a shopper and a mother.

It was a much-needed mini-vacation from the daily nightmare of my life with cancer.

:-) Sharon

Cheetos, Freezer Pops -- and Brain Tumors

I tried drowning my sorrows in food tonight. I sampled an array of my former favorites, including cheetos, freezer pops, girl scout cookies, pepperoni pizza, and even a Krispy Kreme chocolate-covered, creme-filled donut. Unfortunately, my long-held enthusiasm for food eludes me, like so many other passions that have been lost to lack of energy and fierceness of battle. Anyway, I'm sure you didn't check in to hear me confess my food-related sins. You want to know about the very thing that I am trying desperately to forget: my appointment with the brain surgeon.

For starters, I can't call it "the brain thing" any more. The neurosurgeon says that it definitely is a bonafide brain tumor. And it has friends - at least four more (smaller) tumors in my brain. He went on to say while it is operable, he would not recommend a craniotomy because of my full-blown, metastatic, advanced cancer. So what are my options? The first one is whole-head radiation. The advantage to this option is that it would target all of the brains mets at one time. The disadvantage? It can cause permanent memory loss and cognitive impairment. Of course, he cheerfully informed us, this is usually delayed and most patients with advanced disease such as mine don't live long enough for this to become a problem.

The more likely option is some variety of radiosurgery (cyberknife, gamma knife, etc.) I could have the biggest one radiated now and watch the smaller ones with quarterly scans. The disadvantage? Sarcomas are notoriously radiation-resistant, so it simply might not work. Still, this could be repeated with other ones that grow large enough to be problematic, and the side effects are minimal.

In the meantime, I can continue the adriamycin chemo if I choose to do so. This means that I need to make a decision by Friday, because I am due for another round next week.

So, there it is. More tumors. Big decisions. Eventually, I'll have to harness my coherent adult mind and make some hard choices. Right now, I feel a little hungry.

Ice cream, anyone?

:-) Sharon

Hair, Hair, Everywhere ...

No, it's not a mug shot -- just an updated photo of what I look like these days.

I feel like a shedding dog tonight. It reminds me of when I was pregnant with Andrew many years ago. There was a young couple who lived across from us in the apartment complex, and she was also pregnant. We would hang out sometimes in the afternoons, and they had a small white dog that shed everywhere. I would go home covered in white dog hairs, ready to get away from the dog and change my clothes as quickly as possible.

Now, there's really no escape from it. Hair covers my pillow, my gown, my shirt. I scratch my head, and out comes a clump of hair. I pull the phone away from my ear, and there's another clump. I stack them on the arm of my chair, and Don comes by once in a while and discreetly removes the pile of hair.

It's really thin now, especially on top, so much so that I will have to cover it in public. Ugh! I want to have a t-shirt made that says: "Yes, I have tumors on my head, but they don't do tricks. So PLEASE STOP STARING!!!" Don't people teach their children not to stare any more? But actually, it's not usually kids doing it -- it's adults. And their looks range from horror to pity. Either way, it makes me feel like a freak show.

Here's a funny story from the last time I lost my hair. I might have told it on an earlier blog, but it bears repeating: Zach, our youngest son, watched the whole process of me losing my hair/regrowing my hair with great interest, celebrating each gain with me. One day we were sitting together, and he suddenly became very happy. "Mom," he said excitedly. "Mom! Your mustache is back!"

In the grand scheme of things, I guess hair is the least of my worries. It grew back in quickly when the chemo ended last time. But I think I'd rather be bald than shedding! LOL!

:-) Sharon

Another Day

I'm happy to announce that today's blog is not moody. It's basically a boring update on where I am now and where I go from here.

BLOOD COUNTS

Based on yesterday's blood draw, my blood counts are great. My platelets are a little low, and I am low in potassium (but have been for a long, long time). Other than that, both my white and red blood counts are good. Hurrah!

HAIR

This is how I look right now. Kinda scary, huh? My hair is coming out in clumps, and it's getting very thin. Can you see the large tumor sticking up in my hairline? I was doing a "strategic part" to disguise it, but I don't have enough hair left to hide it now. My scalp is dreadfully sore and tender, so much so that I no longer lean my head back on my chair because of the pain it causes. I really should start covering my head, I guess, so I won't scare small children. But I don't want to do it, and besides, it's generally the rude adults who stare at me, not the small children.

CHEMO

So, what in the world do I do about the chemo treatments? My oncologist wants me to continue the current cycle, using only the adriamycin and not the coma-causing ifofsamide (which, BTW, is what I wanted to do in the first place but was overruled by the team of experts). I guess I could do that, but I'm still skittish after the last episode. I just don't know if I can talk myself into submitting my body to another one of those awful treatments. But then again -- what if it's working?

There is, however, another factor that may moot the decision point about the chemo. That is:

BRAIN THING

You may remember me saying after my hospital stay that the MRI shows a small tumor in the lining of my brain. (It is not actually touching my brain -- yet.) Well, what I didn't tell you is that the neurosurgeon there does not think that it is operable. Apparently, it is precariously close to a large blood vessel, and I could bleed to death quickly if it was severed. Cyberknife might be a consideration.

I have an appointment at Vanderbilt on Tuesday, March 18th to get Dr. Weaver's opinion about the tumor. Obviously, if it can be excised surgically, then all chemo would stop until that can be done and I heal completely.

So, there it is -- not a master plan, really, but an overview of what's coming up for me. In the meantime, my strength is improving every day, though I struggle with my appetite and that strange metallic taste. Still, I'm here, and that's no small accomplishment. It's time to make some big decisions, and to enjoy the small things that make living worthwhile.

I hope you're enjoying your blessings, too!

:-) Sharon

Another Dream Dies

Warning: This is a Moody, Moody Blog. I have tried for days not to write it. I don't want to blog constantly with gloom and doom or bad news. I want to be happy. I really do. I try so hard ... but my sorrow tonight is so deep that I feel compelled to write about it.

I violated the rules of the universe this week: I made a giant wish. I don't usually dream big or count on things before they materialize, but I indulged myself in premature happiness over something that hadn't happened yet but looked like it could at any moment. As I tenderly carried it home in my heart, the bottom fell out like a soggy grocery bag and I watched it shatter on the sidewalk, all of its delicate pieces splattering onto the grass around me while I clutched the empty bag and gazed in horror. I fell to my knees to salvage some of it, but there was no piece left that was large enough to hold in my hand. It's gone. Not going to happen. Guess that's what I get for dreaming, huh? Now I'm just feeling stupid for ever even thinking it might have happened. I should have known better than to get my hopes up like that. But I think I just needed something happy to cling to in these difficult days ...

There's no health news that anyone wants to hear. I'm sick, I feel terrible, and I have barely enough strength in my legs to transfer from chair to bed, etc. My hair is coming out; I don't how much I'll lose from the one treatment. I have no tolerance for cold. Every time I vomit I pee all over myself because my bladder is out of whack from the UTI. I can't stand the thought of food, and when I do try to eat the terrible taste in my mouth makes the food strange and unappetizing. The only food I can keep down reliably is chicken broth with a few crackers in it, and I'm so tired of it that I never want to see chicken broth again. I'll never get my strength back at this rate! And how can I even think about getting back into the battle like this? I can't say to the enemy: "Give me a minute! I'm hobbling back onto the battlefield as fast as I can!" The cancer is probably having a field day, happily dividing new cells left and right in my weakened body -- UNLESS the chemo is working, maybe just a smidge?

My faithful blog readers, callers, and visitors who come to the house to see me in my infamous lift chair wearing my big old gown all want to hear me say that I'm feeling great. It makes me happy that there are so many people rooting for me and praying for me. I want it, too! I want to wake up one morning with the birds singing and realize that I feel human again. I want to sit outside in my jazzy on a warm spring day and let the breeze wash over my tired body and soul.

I promise all of you that I am crawling out of this hole as fast as I can. Spring is coming and I won't let cancer rob me of the joy that it brings. Yellow daffodils in little clusters. Tiny buds on the trees that have stood naked in the shivering cold all winter. Bushes that bloom. Green grass where the brown crunchy stuff was. Caterpillars that become butterflies. So much joy. So much hope. So much life.

It's a lovely dream that I hope to actually hold in my hands very soon.

:-) Sharon