My Life with Cancer

It's Time to Go Again ...

2008-08-15T23:19:00.007-04:00

It's hard to believe, but Don and I are packing again tonight, preparing for our trip on Sunday. We were smart enough to buy a set of luggage that is more suitable for airline travel, so hopefully things will be easier inside the airport. And I am happy to report that our much-less-expensive hotel has a refrigerator in the room, so we will be able to keep healthy snacks and soft drinks that don't cost $7 for 10 ounces.

I have been feeling well this week, at least most of the time. My energy level seems to fluctuate greatly throughout the day, and I have been running a low-grade temperature every evening. Overall, I really can't complain about the side effects of yondelis.

The kids started school on Monday, so the preparations and adjustments to the new schedule have consumed most of our energies this week. With our quiet days, Don and I were able to clean the house, pay bills, run errands, and relax a little bit. They, on the other hand, are enjoying the new year and seeing their friends again. I am sorry that summer is over (for all practical purposes), but it's the natural order of things. One season rolls into another, and we are wise to embrace each one for its own beauty instead of longing for the one that just passed and can never be touched again.

In honor of our trip, I am including a few photos from our first trip to L.A. The first one above is my favorite one from the trip. We ate at a fun restaurant on the beach called Gladstones 4 Fish, and the meal was so delicious that we decided to sample their dessert menu. We ordered key lime pie, and they brought 1/2 of a pie. I ate about 2 bites, and Don tried to eat the rest of it, but couldn't eat it all. In the picture, Don is smiling at his piece of key lime pie. The second one, below was taken outside the restaurant by a woman passing by us at our request.

The final one is a photo of Don and me getting ready for our tour of Warner Brothers studio lot. He helped me into the wheelchair-accessible cart, and then he sat on the seat right in front of me. We were the only ones on that particular cart, except for our guide. We learned a lot about the filming process, and had a great time on the tour. After we returned to the gift shop, Don bought himself a Warner Brothers cap and a coffee cup. He also bought me a pen with a top that is shaped like the outline of Sylvester the cat's face, proudly announcing from the checkout counter, "Look, Honey, I bought you a Batman pen!"

I sure do love that man! And tonight, he and I are preparing for a new adventure. Stay tuned, dear friends ...

:-) Sharon

Peace in the Midst

2008-08-07T21:31:00.002-04:00

I have been doing some thinking about how swiftly life has changed recently. It seems like only yesterday that we were counting down the days until our beach vacation. Now vacation seems like it was a million years ago, and even the super-busy days of May and June seem simpler than the current ones. Now our already-crazy life has taken a turn for the even-more-complicated. Not only do I have to maneuver day-to-day life with cancer, messy house, kids who are exactly 82 ½ hours away from catching the school bus for their first full day (don’t even ask me how I know that), finances, van in the repair shop, and all the trappings of regular life – I also have to manage to fit a cross-country trip into our schedule every few weeks. I am NOT complaining because I KNOW how lucky I am to have a new treatment option. I guess I’m just feeling overwhelmed and a little bit frightened. How thin can I spread my energies and still keep functioning? Travel is VERY challenging for me. Remember the great Philadelphia caper, when I single-handedly derailed the trolley tour? And then there were the beach house meltdowns, and the tears in the Cleveland airport because my back was hurting and I couldn’t roll myself another inch but the gate was still nowhere in sight …

I know what you are thinking, and you are right. I should concentrate on ONE day at a time, instead of obsessing about things that haven’t happened yet. If I am given the blessed gift of time, then we will worry about each trip as it comes.

I have a confession: I’ve been thinking a lot about death lately. Not about the actual process of it, but just the whole concept of how we start out in this world as innocent babies, learn to walk and talk and read and write and work and play and love and hate and make our own way in the world and acquire houses and lands and cars and STUFF of all sorts – only to die, leaving only the lives we have touched as our legacy, and our beloved pile of stuff to be sorted and divided amongst the living. And all of our knowledge, our experience, our gifts, and our flaws go down into the ground with us and are gone forever. It seems so hollow, somehow, so … worthless, in a way. What does it matter if we are rich or poor? Pretty or ugly? Smart or not-so-smart? Death is the great equalizer -- except, of course, for the fact that not all lives are equal in length.

There is so much sorrow fraught up in the business of living. And yet, I long to be here for it. Sometimes I feel that we are never so much alive as we are in midst of great struggle; our adrenaline is pumping and our senses are heightened and our hearts are deepened and it is only after the storm has passed that we can truly appreciate the smallest, tiniest blessings of life -- like breathing in the sweet air after the rain has passed through and cooled the searing heat enough for us to sit outside with a glass of tea and the nightly newspaper. And even though my body is tired and broken-down from the length and depth and width of my long battle, I don’t want to have a bitter soul. I want to celebrate those moments when I am not sick and not hurting, and I want to hide them in my heart to cling to when I am fighting. After all, life is made up of moments, and that’s the way I need to live it – not worrying about the future (which may or may not come), but savoring those little snatches of time when all is beautiful and peaceful and as calm as a quiet summer evening after a storm.

:-) Sharon

Still in the Game

2008-08-01T23:45:00.006-04:00

Hello again! I have been working on a long blog post (since I know you all want to hear me go on and on about things -- haha!), but I can't seem to finish it so here is a brief update of the week.

We arrived home late Sunday evening after a very adventurous travel day. I was utterly exhausted on Monday, desperately tired and quite sick on Tuesday, and flat as a pancake on Wednesday, so yesterday was my first productive day this week. This is not a good thing, because I really needed to swing into action when I got home to get the kids ready for back-to-school, balance the checkbook, sort and file all the mail that came while we were away, collect all of my coupons for the grocery store's exceedingly rare "triple coupon week", clean the much-neglected house, and -- in a new bombshell from the L.A. doctor's office -- accumulate ALL of my medical records from my eight-year battle. Just to give you some idea of the magnitude of this task, here's an overview of what I will need:

Records from more than TWO DOZEN doctors.
Records from FIVE different hospitals for SIXTEEN surgeries and more than a DOZEN multi-day inpatient hospital stays.
Records for all of my chemo treatments - SIX full cycles and a couple of partial cycles of Gemzar/Taxotere, ONE cycle of AIM, and THREE cycles of adriamycin.
Radiation oncology records for my FORTY-FIVE radiation treatments.
Test results of all sorts, including mountains of bloodwork, x-rays, CT scans, MRIs, bone scans, spinal tap, GI studies, EEGs, EKGs, and ultrasounds.
Home health and physical therapy records.
Cytology reports from all tumors and biopsies.

Can you imagine trying to gather all of this information together? They are going to perform the monumental task of preparing a research study of the sum total of all of my treatments in the interest of developing better game plans for (a) me, and (b) future patients.

So, do you want to know what I did when I finally mustered up a few ounces of energy and wherewithal? Did I balance that checkbook or scrub a toilet? Nope. I cut out a quilt. I know, I know. A million things need to be done, and I am cutting out a quilt. But, as I said in justification to Don, it was the only thing I WANTED to do. I purchased the fabrics just before our trip for my first full-sized quilt project. I have always wanted to make a blue and yellow double Irish chain quilt. The combination of fabrics is just beautiful! I am working on my sample blocks now.

I know that my time would have been better spent on my to-do list, and I did manage to eventually knock quite a few items off of the list, in spite of a spate of unexpected visitors on Thursday AND the sudden demise of our hot water heater, which flooded our basement on the same day. I have now balanced the unwieldy checkbook, took my giant collection of coupons to the grocery store, cleaned the house to a more presentable degree, and dealt with the mail that needed responses. Still, my mind keeps going back to that stack of quilt squares, waiting for me in the sewing basket. As you know, I want to sew a full-sized quilt for each of our nine children before I -- while I'm -- oh, you know what I mean!

As I completed my 3-hour, 2-cart journey through the grocery store this afternoon, it occurred to me that I am still very much a player in the game of life. My greatest wish throughout all of this long ordeal has been that I continue living with the ordinary stuff of life. The fact that I am still here is an extraordinary gift that I try my best not to take lightly.

:-) Sharon

P.S. -- Mary from the airplane! It was great to hear from you again! Please e-mail me if you can so that I can have a way to contact you.

P.P.S. -- Pat from the grocery store! It was so nice to meet you today, and I look forward to getting together some time soon.

(See, folks, there are advantages to having your name written in giant Sharpie letters on the back of your wheelchair.)

Heading Home ...

2008-07-26T18:59:00.008-04:00

Tomorrow Don and I will be flying home from Los Angeles. It has been an exciting trip, and hopefully a productive trip. We will know in about six weeks if the Yondelis is going to work for me. So far, the only side effects I have noticed is extreme tiredness in the past 24 hours -- which is probably related to all of our activities as well as the actual treatment.

At any rate, we are packing our bags now in preparation of tomorrow's long traveling day. We have truly enjoyed L.A., but there is something so comforting about the fact that we are finally going home to our family, to our house, to our own little place in the world.

I am so thankful for the opportunity I have been given to meet with sarcoma specialists and to try another chemo. I feel humbled by all of the assistance offered by friends, family, strangers -- and hopeful that maybe, just maybe, I haven't reached the end of my beautiful journey just yet.

:-) Sharon

Drinking Up the Sea

2008-07-23T02:33:00.001-04:00

Hello again! The chemo called Yondelis is flowing through my veins tonight, and I am very hopeful that (a) it will work, and (b) I will be able to manage the side effects.

I am glad that you enjoyed hearing about our “great snack caper” yesterday when we were determined to discreetly carry our own snacks into our lavish hotel. After all, we can’t exactly slip in incognito – me with my ghost white skin and obviously bald head shielded by my white head wrap in my poor old worn-out wheelchair with the foam coming out of the armrests, and dear old Don behind me, pushing my chair with one hand while he dutifully dragged our hastily-purchased backpack with the tags still on it through the luxurious lobby toward the elevators, only to be intercepted by an overzealous concierge clerk, who had to wonder what on earth was in the heavy bag.

I don’t if I have ever really confessed this online, but I am queen of cheap. Because of this, it is simply impossible for me to justify the constant outlaying of cash that accompanies such an upscale establishment as this one. I mean, I will only purchase shampoo and toothpaste when I can get it free with discounts and coupons. I, buy leftover Halloween candy for the Christmas stockings and clearanced Christmas candy for the Easter baskets. Why, I won’t even buy my prescription eyeglasses from 39dollars.com until I have a coupon code for an additional savings!

I am happy to report that I am feeling well so far. After my portable chemo infusion was activated this afternoon, Don and I headed up toward Malibu to a seafood restaurant right on the beach. As we ate, I took great pleasure in watching the seagulls as they swooped and foraged for food. I know that they are basically scavengers, but they are such a symbol to me of life by the sea that I can’t help but smile as I watch them. There is actually a group of seagulls that lives in Morristown, in a parking lot on the other end of town. (The site used to be the Hamblen County fairgrounds, but years ago it was converted to a shopping center, and now they also host antique car shows there on summer weekends). I also feel a sadness borne of longing when I see them – their yearning (or is it mine?) to reach the sea again, to breathe the salt air and perch in the golden sand. There is a universal sorrow that springs up from being far from where one is meant to be, and I always think of that when I see them. To me, they represent sand and sea and the free-est and happiest of days. (To Don, on the other hand, they are an unwelcome reminder of that unfortunate bird-poop-on-the-head incident on the Hatteras/Ocracoke ferry a few summers ago …)

This evening, we met up with Phuong and Sherman, both former AI contenders and very talented, wonderful people. We went to dinner at a nearby restaurant, where I ate a delicious bowl of white bean and chicken chili. So far, my appetite is doing fairly well, my energy is decent, and my outlook is optimistic and hopeful. Even though I now that there is a chance that this chemo won’t work, at least we are trying something. Also, the doctor made it clear that there are other options, too, in the event this one does not work – AND we will know in three or four weeks, which means we won’t be wasting precious months of time evaluating its efficacy. With a plan in place (and in action), I feel much less helpless than I do when the cancer is allowed, unabated, to grow and proliferate within me. Left to its own devices, we know what the cancer is capable of doing. It is exciting to be back in the saddle, girded up with my battle armor, ready to fight and try and hope – and LIVE!

:-) Sharon

P.S. – Since my mouth/tongue surgery last October, I have not been able to eat cheese balls or chips of any kind because they hurt my mouth. M&Ms, well … but I am also eating lots of fresh fruit and vegetables, taking the supplements that the doctor’s office recommends, and very carefully keeping my sugar in check since I am diabetic. You are absolutely right to point out that the battle must also be found on the nutritional level, and I appreciate you caring enough to vocalize that to me.

A Drop of Kindness ...

2008-07-22T01:20:00.003-04:00

I have realized on this trip how very important it is to be kind and helpful to other people as often as I can. The kindness of family, friends, public workers, and even strangers have been a great comfort and encouragement to me on this journey.

Don and I traveled all day yesterday, nearly 14 hours from home to hotel. It was definitely an adventure for me, especially the aisle chairs on the airplane. Since the aisle is so narrow, neither a standard wheelchair nor a standard walker (not that I could use one anyway at this point) will fit. So the airlines use a contraption called an aisle chair - a narrow, uncomfortable chair without arms to which you are strapped at shoulders, knees, and ankles. Once you have transferred from your own chair to this tiny atrocity, they pull you - well, actually, the aisles are so narrow that they more of less yank you as you bump, bump, bump each set of arm rests - until you reach your row, then they unstrap you, lift the arm rest, and you slide over onto your seat. On our longer flight to L.A., we were on the 28th row of the airplane, so it was a long, bumpy ride. Getting off the plane is even more difficult, because it is harder to shove the aisle chair forward, and it tends to turn off-course very often, bruising arms or side or knees or whatever unlucky body part is in its way.

Speaking of seats, I had a great deal of paranoia about flying because I have gained weight since I last flew nearly 11 years ago. I have read horror stories about people being required to purchase 2 seats because they can't fit into one. I can't even imagine how I would ever explain it to Josiah's management, who booked my flight, that I am going to need two seats because my butt won't fit. In classic "me" fashion, I obsessed about it for days, measuring my hips over and over against the surface of chair and bed and wheelchair, wondering if I would fit. Leave it to me to worry, not about the plane falling out of the sky, but about being too wide to fit a single seat and having to face the public humiliation that would accompany such a proclamation! I am happy to report, by the way, that I did indeed fit into one seat, and didn't even need a seat belt extension to do so. It reminds me of one of my favorite quotes: "Don't tell me that worrying doesn't work, because the things I worry about the most don't happen!" Haha! I don't know the author, but it fits me perfectly.

I've rambled off-topic, as usual. I was trying to tell you that we have met and been helped by the nicest people on this trip. Some, like the airline employees assigned to drag me up and down the plane aisles, were just doing their job. Still - there is a difference between a job done professionally and a job done both professionally AND compassionately. Everyone, from the airline attendants to the aisle-chair-crew, went out of their way to help me. And there were others, too, like the nice woman who shared our cramped, three-seat row from Cleveland to L.A. with both the two of us and her young son on her lap. They were returning home from a cross-country visit to relatives, yet she took the time to help us find our luggage and to make sure that the rental car shuttle was handicap-accessible. Then there are those of you -- you know who you are -- who are funding carry-in dinners for the kids each night. They are really enjoying the nightly feasts from that generosity. And last, but not least, our dear son and his connections, have funded the trip for us and placed us the nicest hotel I have ever seen! Also, your prayers are greatly appreciated. Today I was sitting at lunch, just before the appointment, trying to fight back the tears of dread and doubt (What if we are turned away? What if even the experts have nothing to offer us?) ... As we left, a woman slipped us a note. When I opened it, it was a note of encouragement from this complete stranger. She could see that I must be battling cancer, and she wished me well and hoped that I would find strength and courage for the fight. Since they were not sitting near us, there is no way she could have overheard my fears as I voiced them to Don. It was, simply, a random act of kindness that brought tears to my eyes and hope back into my hesitant heart.

I am happy now to report that the doctor we saw today DID offer us some hope, in the form of a new chemo known as Yondelis. The clinical trials have been completed for it, and it has received approval in Europe, but FDA approval is still in the works. Because of this, the manufacturer will provide it free for "compassionate use". My insurance will cover the lab work-ups, doctor's visits, etc.

I am familiar with Yondelis from the LMS list on the internet. There are a number of people with leiomyosarcoma who have achieved good stability with it. I had my blood workup and a Zometa shot (for my bones) today, and I will begin the chemo tomorrow. After pre-meds, they will begin a 24-hour drip, and I will keep the portable pump with me until Wednesday, then go to have it disconnected from my port. In three weeks, I will return to L.A. to see if it is working. Side effects? While it is less toxic than my previous chemos, it IS still a chemo, so there might be nausea, vomiting, and so on. Less common (and more troublesome) are usually-reversible damage to the liver or kidneys.

We really, really like this doctor. He is very compassionate and extremely knowledgeable about sarcomas. I nearly cried when another patient in the waiting room mentioned that is battling a very similar sarcoma. It was the first time I have ever run into another sarcoma patient during treatment.

I know that this is already a long post, but I want to share a funny story from today. Don and I have never stayed at such a nice (read: expensive) hotel prior to now. Needless to say, we are a little shell-shocked at the cost of things here, like $7 for a 10-ounce soft drink and $5 for a snack bag of potato chips. Since I am such a frugal soul (read: cheapskate), I decided to locate a Wal-mart to purchase some drinks and snacks for the room. After my very long doctor's appointment ended, we fired up the Garmin and headed north to the nearest one. Unfortunately, that one turned out to be in a very questionable part of town, without any visible accessible parking, so I checked and found another one 5 miles further north.

When we finally arrived at our destination, we discovered that it was not a Wal-mart at all, but a Sam's Club. Of course, I love Sam's Club. It is great for a large family, and I get a big kick out of all of the giant-sized things. (But, honey, we NEED 15 pounds of cheese balls ...) But today, we were now faced with a dilemma: how in the world could we sneak our giant stash into the Four Seasons in Beverly Hills? I couldn't just pile it on my lap and roll right through the lobby with it. It would have been hard enough with smaller sizes in Wal-mart bags, but everything at Sam's is extra-large, and they don't even give you bags to put it in. So, we commenced a search throughout the store for something that would allow us to stow the stash and sneak it in with us incognito to our hotel room. An exhaustive search for duffel bags or small luggage came up empty. I tried thinking "out of the box": sleeping bag? small tent? I mean, our room IS big enough to camp in... After Don gave me his best "you've got to be kidding" look, I stumbled upon the perfect solution: a backpack. Now, this was not just any backpack. This was a hiking/deep woods camping backpack made by the company who invented Swiss Army knives. (Because, after all, what back-country camper doesn't need a case of diet soft drinks, a 3 1/2 pound bag of M&Ms, 2 pounds of tortilla chips, a 3-pack of chip dip, 500 Os-cal tablets - doctor's orders, and an enormous spray-bottle of sunscreen?)

We made our purchases and then, there in the parking lot beside our rental car, we loaded the mammoth backpack with our enormous goodies and returned to the hotel without fear of embarrassment. (Well, I DID still have my Taco Bell bag hidden under my sweater ...) When the valet offered to take the bag for us, I realized that the large price/description tag was still hanging from it. I'm sure the poor guy is still wondering what we plan to do with the body we are hiding in that heavy bag!

Oh, well, life IS an adventure. And it is one made both kinder and gentler by all of you who have helped us, supported us, prayed for us, or even just hoped with us that a new treatment plan could be made. I vow that I will be as kind to others as all of you have been to me, and pray that I live long enough to fulfill that promise many, many times.

:-) Sharon

Indulge Me ...

2008-07-16T19:26:00.010-04:00

Here's one more from the Leming archives. I found this photograph today, while we were sorting through the broken-closet-rod disaster. Our bedroom closet rod broke, which caused the top shelf to flip and dump the contents on the floor. The silver lining in all of this is that Don found this long-lost photo. I searched in vain for it in the basement when we cleaned down there a few weeks ago, and I thought that it had probably been ruined along with a lot of other pictures and mementos when our heat pump unit leaked.

The picture was taken for a church directory in September 1991, just a day or two after Don and I were married. I was 23 years old, and Don was 32. Autumn, Josiah, and Andrew were 1, 2, and 3 years old. Autumn is reaching out for the camera.

Oh, how I dream of, how I long for those days, when I was young and fresh-faced and the kids were right there with us. We had such fun when they were young. I absolutely adored them and devoted much of my energy to them. I had made many mistakes in my early adult years, and yet one of the biggest mistakes (a foolish marriage) also provided me with the best gift of all: three beautiful children. I was determined that they would not suffer because of my poor choices. I grieved for the thought of them being raised without a dad after my divorce, but I was certain that I would never find a man that I trusted with my kids. Then I met Don on a blind double date (the bright idea of a friend of me), and the rest is history. I was skeptical and even a little difficult at first, but Don was so patient and so kind and so gentle that I just couldn't help but fall in love with him. It was undeniably the best decision I have ever made. I have always told Don that I believe that God was looking down at us and smiling on the night we met.

I am thankful for every single day that we have spent together. Every morning when I wake up, I breathe a prayer of thanks for another day to spend with him and with all of our children, and then I beg for just few more ...

:-) Sharon
-

P.S. -- Another appointment! I will see Dr. Chawla, head of sarcoma clinical trials for UCLA, on Monday, 7/21. It looks like we will be flying to L.A. on Sunday, 7/20, and staying for one week unless I need to be there longer for tests or treatment. We are still working on an appointment with an orthopedic surgeon.

Worth a Thousand Words

2008-07-15T22:26:00.003-04:00

I was looking through some of my favorite beach pics tonight, and I thought I would share a few of them with you.

There are simply no words to describe how much I love this man.

Precious moments with Andrew and Josiah

Here I am at the top of world after climbing the stairs from the beach to the deck.(Ignorance is bliss, I suppose.)

The whole motley Leming crew

Normalizing (and celebrating) the absurd: Andrew and Josiah join me for my "picnic on the floor".

Sisters unwind after the kids are in bed. It was the first time that all five of us had ever been to the beach at the same time.

__________________________________________

When Don and I ran errands yesterday afternoon, we stopped in at our favorite local restaurant for lunch. An older woman sitting near us (and I guess noticing my headwrap and wheelchair and realizing I was a cancer patient) said to us, "I'll bet you all are here celebrating good news!" Don and I exchanged glances, and I replied, "Why, yes, as a matter of fact, we ARE celebrating today."

Because, the fact is, we ARE celebrating today -- and every day that God is kind enough to lend us. I don't want us all to lose sight of the fact that so far, I AM still alive and still fighting and still enjoying my life and my family.

No one is given any promise of tomorrow, so let's all celebrate TODAY.

:-) Sharon

Still Swimming (well, not literally, but you know what I mean)

2008-07-14T17:49:00.005-04:00

Hello, again! Wow, I am humbled and thankful by the outpouring of love, support, and positive thoughts from all of you. It means a lot to me to know that there are people cheering for me.

I confess! On Friday after my appointment I felt a great deal of panic combined with an underlying current of hopelessness. It seemed like the cancer had grown so suddenly, and spread so mercilessly. Once I calmed down, and thought about it some more, I realized that we are actually talking about SIX MONTHS of growth. Because the chemo did not work, the cancer continued to grow. This is not shocking news. We had simply hoped that the chemo WOULD work, and that I would get shrinkage or at least stabilization.

The hardest part of the news to bear is the devastating bone erosion in my left hip. If it breaks before some sort of intervention takes place, whether it be chemo or radiation or some type of radical surgery, I will be bedridden again. Bedridden, as in hospital bed with the cheap plastic mattress in the living room. No more sleeping in my own bed, no coupon trips to CVS, no showers, no dinners out with friends. Bedridden. Ordinarily, that is the treatment for a fracture of the inferior pubic ramus. They order bedrest until the bone heals. Unfortunately, as long as there is cancer in the hip, it will NOT heal and I will be stuck with the terrible pain and the loss of my beloved mobility.

Anyway, enough of my fears and phobias! I actually am blogging tonight with some good news: I will be traveling to California next week to see a sarcoma specialist, Dr. Charles Forscher at Cedars-Sinai. My appointment is on Thursday, July 24th. We haven't made travel arrangements yet, so I don't have any more details, but at least we have a plan! We will also be seeing the radiation oncologist on Thursday of this week, to discuss whether radiation to the hip would be beneficial or disastrous. (Radiation weakens bones, so if the hip is already very weak and near breaking, it might not be a good idea.)

Please pray for me as we finalize our plans. I want all of you to know that I haven't given up, haven't stopped fighting. I haven't abandoned all hope for a future of LIVING with cancer, or maybe someday even living without it again ... I know it's a long-shot, but that's the wonderful thing about hope. It doesn't have to be grounded in any kind of reality or proven by any precedence. Sometimes it's just the faintest flicker of light in the deepest of night, reminding us that miracles CAN happen, that life IS worth living, and that we can survive things we never thought possible if we just set our sights on that tiny light instead of surrendering to the darkness.

:-) Sharon

The News is Not Good

2008-07-11T16:24:00.003-04:00

I will post my reactions later, but for right now here are the results from our doctor's visit today:

The inferior rami (bone) in my left hip has eroded, and is in great danger of breaking at any time. He recommends that I put absolutely no weight or pressure on it (which is basically impossible since I do not have full use of my right leg, either).
The tumors on my scalp and inside the lining of my skull have grown and multiplied.
The lung tumors have grown and multiplied.
There is extensive spread of the subcutaneous nodules throughout my chest wall, arm muscles, and retroperitonal areas.
The adrenal gland tumor has become more prominent.
The cancer has now invaded my liver and right kidney.

He very gently recommended Hospice, but when that was too difficult for my family (Don, Dad and Virginia, Mom) to hear, he offered to refer me to M.D. Anderson hospital in Houston, which is world-renowned for its sarcoma treatment expertise. He is going to make the referral, and hopefully I can be seen there in 7 - 10 days. My family is adamant that this is only a stepping stone to the next phase of my battle, but it is still painfully obvious to all involved that the handwriting is on the wall.

I am certain that I will have much to say about all of this in the coming days and hours, but right now I am feeling rather numb. Please pray for us.

:-) Sharon

P.S. -- I am eternally grateful that we had our vacation before we learned the latest news. Check out the photos page for beach pictures. I uploaded some last night, and will add more as time allows.

Marathon of Tests

2008-07-07T21:19:00.003-04:00

Today was a marathon of tests. We were gone from the house from 9:30 this morning until 7:30 this evening. I had bloodwork, CT scans, chest x-rays, and the much-dreaded MRI. (The last time I had one, it took 3 tries because I was so frightened.) Other than just being downright tiresome, the day went well. My only major difficulty was vomiting between rounds of the MRI. The technician brought me out of the machine to inject the dye, and the nausea swelled up without warning -- a combination, I suppose, of nothing-to-eat-or-drink-after-midnight, berry-flavored barium, CT contrast dye, MRI contrast dye, fear of the MRI, and physical exhaustion. I was so relieved to get the tests and the hospital trip behind me. Don and I celebrated with a nice, quiet dinner before driving home. In spite of my mouth sores, my appetite cooperated well and I was able to eat most of my dinner for a change.

Thanks to everyone who sent me messages, called to wish me smooth sailing for the tests today, or offered up prayers on my behalf. I am actually feeling much better today, although I suspect it will take a few more days to quell the exhaustion. Sleeping in my own bed last night (with my oxygen machine that I missed so much during the trip) was a nice comfort to me. My chair is a welcome friend, too, and hopefully will help the swelling subside in my giant foot. It's so big right now that I can barely squeeze on a shoe over it.

I am going to concentrate for the next little while on getting life back to a normal routine for all of us, with a focus on taking care of myself with regular meals and rest and time to relax and savor all of the great things about summer. I haven't been to the pool in several weeks, because I didn't feel well after chemo and then things were just so busy. And yes, I have forgiven myself for my emotional outbursts on the trip. After all, I am trying to navigate a difficult and treacherous journey into the valley of the shadow of death. There are no road maps in the land where I tread, and rare is the soul who makes it out to offer any advice to the rest of us who walk this lonely path. I can't prepare myself ahead of time for everything that I am going to feel or how I am going to react to the simplest of things, like photographs of my family without me in them. Sorrow and grief IS part of my journey, just as darkness and shadows are part of the light. It is a necessary, albeit sometimes inconvenient, part of my life with cancer.

:-) Sharon

Til Human Voices Wake Us

2008-07-06T21:14:00.004-04:00

We are home tonight from the beach. Right now I feel exhausted and just a little bit lost, yet relieved at the same time to be home in my chair with my giant foot propped up and the normal sounds of the television and someone playing a guitar and the fan blowing and my fingers clacking on the laptop as I write this message. I am thankful for the quiet, familiar, frenetic energy of home.

Our vacation was a wonderful glimpse of paradise in so many ways. We had an incredible view of the ocean from the large windows on the main level, and dolphins played just off shore while the pelicans hovered over the water in hopes of finding a fish. The ocean was as large and as majestic and as healing as ever, reminding me of the bigness of God and the smallness of me. Josiah was with us, calling me "Momma" and making us all laugh in spite of his fierce sunburn. The kids dug holes and buried each other in the sand and splashed in the salty surf, and when we were not on the beach we shopped for souvenirs in air-conditioned stores that sell boogie boards and flip flops, salt-water taffy and coffee cups, t-shirts and wind chimes and long strands of shells that spin in the breeze.

I often use the analogy of a roller coaster when talking about my life. Never has it been a more fitting image than this week. There were the highest of highs -- my reunion with Josiah at the airport and the unbridled joy of watching him here and there all week, sharing a cold popsicle with my baby niece, sitting on the beach by the ocean with my whole family frolicking around me, triumphantly tackling the 17 steep steps back up to the boardwalk; there were also the lowest of lows, dark tunnels of which I am loathe to speak. For some reason, I simply could not seem to control my emotions. I cried without warning, lost my temper irrationally, and openly bemoaned the fact that I felt left out of so many activities due to my physical limitations. My family, accustomed to comforting themselves with the fallacy that I am strong and have gracefully accepted my situation, was totally flipped out and took to avoiding me -- which only heightened my feelings of loneliness and abandonment. There were hurtful words exchanged, and I don't know what amount of damage control will be required to pick up the pieces, or if I even WANT to make amends if they can't accept the fact that I am gravely ill and let me FEEL and EXPRESS the pain of it betimes without trying to hide under a plastic smile.

At the same time, I am frightened by my own emotional volatility at this point. It feels like a monster has been unleashed inside of me -- a misshapen, feverish beast borne of pain, fear, loss, helplessness, anguish, and downright fury at my lot in life. I have kept this thing inside of me for so very long, carefully it shoving it down into its box whenever anyone was near, never daring to even admit its presence even to myself. Unfortunately, it has grown to the point that the latch no longer holds it. Like a jack-in-the-box wound one time too many by a child who is supposed to be putting his toys away, it roars to the surface without warning and always at the worst possible moment. I am embarrassed and ashamed about my loss of control. I think I might be a little depressed.

I hope that you will understand that for now the beach pictures are just too painful for me to view or share. They are a snapshot of the purest of happiness, of bliss and relaxation, of sun and sand and sea -- and yet, they are also a painful reminder of the fact that vacation is over and that our beloved son Josiah is on a plane headed for London and that nothing in our lives, good or bad, lasts for very long. When I am feeling a little stronger, I will treasure them and the memories they hold of my whole family gathered together in that beautiful house by the sea -- and I will console myself with the knowledge that nothing, and no one, is ever really gone if they live in our memories and in our hearts.

:-) Sharon

Deepest Chambers of the Sea

2008-06-30T00:02:00.010-04:00

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

2008-06-18T19:56:00.004-04:00

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

2008-06-12T21:28:00.001-04:00

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 ...

2008-06-06T22:16:00.005-04:00

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?

2008-05-31T00:41:00.001-04:00

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

2008-05-23T23:48:00.002-04:00

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

2008-05-14T22:30:00.005-04:00

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

2008-05-11T23:21:00.002-04:00

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?

2008-05-07T22:56:00.003-04:00

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?

2008-05-03T00:00:00.004-04:00

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 ...

2008-04-29T23:38:00.005-04:00

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

2008-04-26T22:01:00.004-04:00

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 ...

2008-04-15T23:21:00.005-04:00

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.