Monday, May 18, 2009

Where does time go?


The weekend of Mother's Day, we took our yearly pilgrimage to Brenham for Maifest. Mother's Day weekend is one of the Sellers' favorites for several reasons. I'll state the obvious for me- Duh! I get gifts and get to pick out where we go for dinner. What can get better than that? I also get to see some of my dear friends from childhood and junior high. It's like no time has passed between us and we pick up where we left off. My girls will tell you they love it because they get out of school early on Thursday and get to miss school on Friday. They also love to see where Mommy went to school, used to get her hair cut or took gymnastics. And for those of you who haven't experienced Maifest, it is quite the production. My family has been gone from Brenham for over twenty years. I cannot believe it has been that long (or that I am old enough to say that). I still look around expecting to remember or recognize everyone. For the next couple weeks, I'll get waves of nostalgia thinking about all my happy memories and how much I loved living in Brenham. And then it hits me- in two years, Abbey will be the exact age I was when I moved there for the second time. Where does the time go?

This past weekend my oldest, Abbey, made her First Holy Communion at St. Vincent de Paul this weekend. I am so proud of her. I boo hoo'd like a mother of the bride. I admit- I'm just a big marshmallow of emotions now. When you go through a life changing experience like an illness, milestones take on a different meaning. It's not better or worse- just different. I feel like it was just last month that I held that bundle of love in my arms and had her baptized. As adults, we always talk about how quickly our children grow up. It seems like time moves faster now than it did thirty years ago. As a child, I felt like time moved at 33 RPM (you Gen X's remember your record turntables. 33 RPM was slow, 45 was medium and 78 was Alvin and the Chipmunk fast.). I remember being in elementary and middle school thinking that the day was so long. I thought summer would never get here. Then it started to pick up in junior high. I think I am the only person on the planet that actually enjoyed junior high. Then things went back to 33 in high school only to jump to 78 in college. And my life has been on that speed ever since.

Wouldn't it be nice to have a life speed controller? I think there might have been a movie with Adam Sandler with this concept. You could slow down the experiences that you want to savor and speed up the unpleasant ones. I would slow down my three year old- in more ways than one. The child moves at bionic speed and can climb like a mountain goat. But she's also at such a fun age. She has been calling me Chuck for the past two weeks. We have no idea why or where she got it from. She still loves to cuddle with me and thinks I am the cat's meow. I would slow down all my girls growing if I could. I have loved something about every age. I would slow down Christmas, family vacations, visits with my friends that I don't get to see on a regular basis. I would cherish several more hours in the day to read or write. There's that laundry list that keeps getting things added to it- organize the game room, give old toys to charity, or clean out the attic and garage. And the opposite would work for the things that are not so pleasant. I would ramp up the speed on my next hospital stay, or my yearly OB/GYN appointment (girls, am I right?).

I can't believe it will be two years next week since my initial diagnosis. I feel like I'm stuck on 78 speed. We had an appointment with my stem cell transplant onc last week and got a tentative timeline on my treatment. I will have two more chemo treatments (today and next Tues.). I have to be "chemo free" for three weeks prior to my transplant. I am blessed that I am going to get to do two of the things I really wanted to before going in for my transplant. I will be able to take Abbey to Camp Mystic (my baby is going for 4 weeks!). Then the next two weeks will be filled with lovely scans and tests (again, wish it was going to be at 78 RPM). I will have a bone marrow biopsy and extraction. We found out that since my cancer has not spread to my bone marrow, they want to extract and store some as a backup in case it is needed in the future. This requires about fifty (yes, 50)pokes with a long needle into my back hip bones. Thank God I'll be knocked out and they give me great pain killers. I always thought my hips were a cruel joke that ran in my family. Maybe this is why God gave them to me. HA! They will give me a PT and CT scan to restage my cancer. Basically, it is a poke and prod fest for MDA at my expense. Trust me, it's not a party you where you want to be guest of honor. But then I get to go to the literary agents conference in Austin June 25-28. On June 29, I will most likely be admitted to the hospital. I will be giving a "prep chemo" to bring my immune system down and then I will receive a stem cell transplant. To this date, we have not found a perfect 10 out of 10 match. They would like to leave the search open. I am a firm believer that miracles do happen and they match could be out there. In the meantime, they plan to use stem cells from the umbilical cord registry and keep the three 9 out of 10 donors as a backup. I asked my onc for his reasoning and he explained that the mortality rate is lower, the success rate is the same or slightly higher, and the cells are readily available since we don't have to extract them from a donor. I'll be in the hospital for three to five weeks. When he told me it could be five weeks, I burst out into tears. But I now tell myself that five weeks is nothing. Look how quickly the past two years has flown by! Five weeks is less than a report card period at St. Vincents. Most women don't even know that they're pregnant at five weeks. Back in the 80's, my perms lasted longer than five weeks!

I still don't have the exact dates for the Braeswood Marrow Donor Drive. But as soon as I do, I'll send an update. When we met with my transplant coordinator, she told us "you two sure have a lot of great friends! We have so many people who sent their HLA typing on your behalf." Doug and I could not agree more that we have wonderful friends. We could not be where we are now emotionally in this journey without the support of each and every one of you.

God bless you all!
Trace

Friday, May 1, 2009

Time and Patience


In honor of Maifest, which is next weekend, I am posting this picture. This is one of my favorites. I was Martha Washington in the Maifest in 1974.

Thank you to all who have been sending me texts or emails regarding my results. I apologize for the delay in getting this out but I was exhausted last night. I have been a little nervous about the results and have not been sleeping well. We did, indeed, get some good news yesterday. My scan results from last week are in and it looks like I am responding to the SGN-35 (a.k.a. the lymphoma wonder drug/chemo). The scans showed a 50-70% remission. We've been down this road before so I'm a little dubious but happy about the results. I am focusing on the positive- I'm not stagnant, it's not spreading and I am responding. As far as my stem cell transplant and finding a match, I am afraid I don't know anymore than I did last week. Like I have mentioned before, this is a very hurry up and wait experience. Since I've been going through treatment, MDA is not anxious to jump start the transplant process. And as far as finding a match, I have an email into my coordinator to find out the status. I have asked for a list of those who have submitted their info and are not a match. HIPPA law (medical privacy) says that they can tell me if you are NOT a match but cannot tell me if you are. Go figure. Thank you to everyone who has gotten tested or wants to get tested. Braeswood is planning on doing another drive and I will be sure to send an update out letting everyone know the date, time and place.

Joel and I did not have our date yesterday. My white cell count was down which seems to be the trend on this particular day of my chemo cycle- this also explains some of my exhaustion. My party gift yesterday was a shot of nueprogen- a white cell booster shot. I was poked with a needle 3 TIMES!!!! yesterday. For those of you who don't know- I HATE NEEDLES!!!! My regular onc has forwarded my results to my transplant onc and they will decide a timeline on when I will be going for my extended stay at the MDA spa. My gut feeling is that they will have me do at least one more round of this chemo and then go forward with the transplant which would most likely put me in the July time frame.

I had a minor break down a couple weeks ago. I am humble enough to admit that I am known to have a flair for the dramatic. I asked myself "why is this so hard for me? why, if I got the easy cancer to have, can't I shake this darn thing?" And as always, it got me thinking about things. The things I cherish the most are things that I've had to either wait a long time for or work hard for. Here are some of my examples:
1. Doug and I dated for five years before we got married. I dated him longer than it took me to get through high school or college. I tease him that he used up all my patience making me wait for my ring but the truth is, he was totally worth the wait.
2. My college degree. I have openly said that I went to college totally for the social aspect. The academic side was a little more challenging for me. Could I have worked harder and made better grades? Absolutely. But for those of you who went to good old BU with me, you can agree that having fun was something you had to work at in Waco! And boy did the work pay off!
3. My children. Abbey was eight days late from my due date. I told the doctor I was going to smoke that child out of me if she didn't hurry up and send me into labor. And when they put that precious baby in my arms, I realized she was totally worth the wait. And so were each of her sisters.
4. My friends. Friendship is like a flower. Both need nurturing and attention. This experience has taught me that I have been blessed with the greatest friends on the planet and each one is worth the time and energy it takes to have that friendship. I only hope that I have been such a good friend to you.
5. My home. For any of you who are thinking about building a house but never have, let this be a heads up for you. It can be a very grueling and frustrating process. Especially when you have an engineer (Doug) and a liberal arts major (me) working together. But in the end, it is totally worth it. I love my home because it is more than a house. It is the safe place we have "built" both literally and metaphorically for our children. It is filled with beautiful things like pictures of the girls, family traditions, laughter and love. 4142 Bellefontaine (sounds pretty swanky, doesn't it) is one of my favorite places to be.
6. My health. Yes, some days I feel like I've gone through hell and back. I've lost my hair. I've gotten puffy, nauseous, tired and scared. I have been poked with a needle more times than I can keep track. But that is just a small price to pay to watch my children grow up.

My mother used to tell me "good things come to those who wait". As an adult going through treatment, those words could not be more true.

I love reading your comments. Keep them coming!
God bless you all!
TFS

Wednesday, March 25, 2009

Will the real Tracye Sellers please stand up?


First of all, this picture is for all my high school friends who remember me fondly as a bowhead! I cannot help I was born this way. If I had enough hair, I would wear a bow now.

As most of you have gathered, I try to be a very positive person. I have to be when I'm in the situation that I am. When my girls start complaining about someone, I make them tell me three positives about that person. Then we talk about how that persons good characteristics outweigh their bad ones. Well, the other night at the dinner table Abbey and Julianne started complaining about each other. I know it is a normal sibling thing. God knows I complained about Caroline and I'm sure she had some choice words to say about me. But I decided that I was going to make them tell me three things that they liked about each other. I have to say it was a hit. After they complimented each other, they wanted to do the same for me and Doug. So we went around the table and said three things we liked about each person. Now they want this to be an everyday occurrence. I think I've created a monster!

The compliments that Doug and the girls said to me were quite entertaining. Abbey and Julianne like that I snuggle with them in the morning, I take them for ice cream after school sometimes,I make good dinners, I give magic kisses so that they have sweet dreams and I'm not bald anymore. Doug said I was kind, nice to people and a good homemaker. I would like to think that I am a kind and nice person- as long as you don't hurt someone I love as I mentioned in my previous blog. But the good homemaker struck me as funny. My husband may have married me because he thought I was cute, or he liked the fact that I could cook. But I can honestly say he did not marry me for my housekeeping abilities. I felt like I was on that show that my mom and I used to watch when I was little. It was called "To Tell the Truth". They would have three people come out claiming to be the same person. They would have a panel of three contestants that would ask questions to determine who was telling the truth about who they were. Here Doug is describing this person who is kind and a good homemaker and I'm looking around the room to see what she looks like.

This got me thinking how different people can see us from how we see ourselves. People have mentioned to me how brave I am or what a good attitude I have about my illness. The truth is I do get scared. I get really sad to think I have a life threatening illness. I do have my "oh, pity me" days every now and then. But instead of letting myself wallow, I'll name three things I'm thankful for- that it is me and not my children going through this, that I am not alone, and that I have faith in God to cure me.

I would not exactly call cancer a positive experience. But positive things have come from it- the outreach of so many wonderful people, I have been able to build an awareness of stem cell donation, and be an example for my girls to show them how a marriage and a person handles a crisis in life.

As far as my update, I stood up Joel the Pole tonight. My blood work showed a low white cell count so my chemo was postponed a week. My schedule is to take the chemo once a week for three weeks and then have a week off. I will do this for at least two more months but more like four or five. It is by far, the easiest treatment I've had yet. I won't lose my hair but I'm not getting attached to my new doo quite yet. What will happen is after I finish this treatment, I will hopefully be in remission. They will give me a concentrated high dose of chemo (think chemo on steroids) which will probably make my hair fall out. But hey, it's only hair. Those are five words I never thought I would say! And then I'll have the stem cell transplant.

I don't have any results from the marrow drive. I found out it will take about six weeks for M.D. Anderson to receive them and then they have to match the typing to mine. So in the meantime, we still pray for that perfect 10 out of 10. I know that person is out there. Thank you to all who have gotten tested! I'll put the word out as soon as I know anything. Feel free to leave comments on the blog- but only if it's nice. Any mean comments may result in a scandalous story about you in my next blog that may or may not be true! Did Doug mention my sense of humor?

God bless you all!

Thursday, February 26, 2009

Reunited and it feels so good!


I can't get that cheesy Peaches and Herb song out of my head now. I makes me want to go to the roller rink (all you gen xers will know what I'm talking about). I was reunited with my boyfriend Joel the Pole yesterday. In other words, I started targeted therapy yesterday. I am so glad to finally get this show on the road. This is supposedly the new lymphoma wonder drug, SGN 35, that will hopefully put me in remission so that I can move on to my transplant. It is in the stages of getting FDA approved but they have seen excellent results from it. Chemo will attack the bad cell but also the good cells hence, the unpleasant side effects. SGN 35 is targeted therapy meaning that it attacks the antigen in the Hodgkin's so I will experience very little side effects. I get to keep my Fonz looking hair but may experience fatigue, tingling in my fingers and feet, and maybe a little nausea. I've tolerated everything they've given me pretty well so far so hopefully, this will be the same except I want it to kill this thing once and for all! Another big blessing is that it is infusion instead of in patient and only takes thirty minutes. I'll go once a week for three weeks and then have a week off. I'll be on this therapy for at least 2 months. However, we are hoping I stay on it for the maximum time which is six months. Personally, I think that I just haven't been on treatment long enough and that is why this stubborn cancer keeps coming back.

When Doug and I first started dating, I used to get very frustrated when we would go to parties, showers or anywhere there was a big group of people. He would go off and leave me. I wished for a boyfriend that would stay by my side and be my boyfriend/date for the night. Well, be careful of what you wish for. I now have Joel the Pole at my side the whole time during chemo and he'll be by my side during my hospital stay. After five years of dating and nine years of marriage, Doug now stays pretty close to me when we're at a crowded function. Good boy!

Some days I still have to pinch myself to remind me that this is really happening to me. I never thought that at forty (yes, I had to check a new age box this year) I would be battling cancer for the third time. I am the one that never got sick. Until I had Abbey, I had never used all my sick days at work. I never called in sick to work. I can count the number of times I've gone home sick on both hands and not use all fingers. I am the first person on both sides of my family to have any type of cancer- except for an uncle that got prostate cancer at an old age and my great grandmother that had colon cancer, surgery and lived to be 86. Remember the old phrase never say never? I never thought this would happen to me. But then the optimist in me turns it around to something positive. Here are some things that I never thought would happen to me but have turned out to be a pleasant surprise:

1. I never thought my marriage would have to endure a test like this. Yes, we rattle off those vows of "in sickness and health" without really thinking about it. I will say it has made our marriage stronger and our love, admiration and respect for each other grows every day.
2. I always new I would love my children but I also really like my kids. Now I can hear you all rolling your eyes. No, I am not one of those moms that think her children are the end all be all of children. I know they are not perfect. But I also think they are funny, creative, smart and good people. My prayers continue to be answered when I see them growing into loving and kind individuals.
3. I never dreamed I would live in a neighborhood that has given me an real sense of community. I know I sound like a broken record, but we could not be getting through this ordeal without the help of the kindness and generosity of our community.
4. I never thought I could feel such fierce love for someone. We all know of the primal mother instinct but I feel that way about my family and my friends. Say what you want about me but don't you dare try to say something about Doug or my girls. Or anyone else I love for that matter!
5. I never thought I would develop such a love for volunteering. It is one of my true passions.
6. I never thought I would be so happy to drive a mini van. Doug and I had a mini van pact when we got married. I would not ask for one and he would not buy me one. After we had our third, Anne Renee, I begged for one. I figured I was going to look like a mom no matter what I drove so I might as well drive something that has all the modern conveniences for a mom- remote controlled sliding doors, DVD player, and is a height that all three can get in by themselves.
7. I never thought I would pay more for tickets to the Wiggles concert than I did for the Rolling Stones! Truth be told, I probably had a better time at the Wiggles than I did at the Stones!
8. I never thought I would be the type of mother who would let her three year old eat girl scout cookies for breakfast. But you have to pick your battles and this has only happened once.
9. I never thought I would have so much respect for my mother. As a mom now, I realize what she went through with my parents divorce and what sacrifices she made. I love you mom!
10. I never thought I would love the silence of my own home but miss my kids so much at the same time.

This list could go on forever so I'll just wrap it up right now.

Many of you have gotten tested to see if you're a match. Words cannot express how grateful Doug and I are for our friends and family. Please know if the tables were turned, we would do it for you in a heart beat! If you would like to get tested, there is still time. Yes, we have found the 3 9 out of 10 donors but they really like to have 10 out of 10 so we are still searching. My wonderful friends Robin and Sue have organized a stem cell match drive at West U Methodist on March 9th. A representative from the national registry will be there for testing. No needles involved- it's four swabs of the mouth and takes about 10 minutes. You will be tested to match me first, and if it is not a match, then you will go in the registry and hopefully, help someone like me! If March 9th does not work for you, I will send out a code where you can do it on line. If you want to get tested but don't want to go in the registry please see my first blog entry. All the info is there.

Doug is still known to socially abandon me from time to time. It usually involves his college or high school buddies. But when it comes to the important times, he's just where I need him to be- right by my side. And I am so grateful for that! Because "We're reunited and it feels so good!" Sorry! I just couldn't resist and I have this darn song stuck in my head!

Friday, February 13, 2009

What do I want to be?


My eight year old has started telling me what she wants to be when she grows up. I give her the standard girl power response- "you can be anything you want with determination and hard work." Then she turned the tables on me and asked me "Mommy, what are you going to be?". I told her that my job was to her mother and to run our house." But it started making me think that this is one goal that is never quite finished. At anytime in your life, you can ask yourself that question. The answer can vary or change but there is always an answer. Let me demonstrate for you.

My earliest memory (and I do have a fantastic memory)of being asked this question was when I was 5 years old. A family friend asked me what I wanted to be when I grew up. My response was "My daddy is going to buy me my own TV show." I used to dream of being on television. I did not want to be on the Brady Bunch or the Partridge Family- they had too many kids (did I mention I was an only child for a long time?). My two most coveted shows were The Bionic Woman and Charlies Angels. I would devise some plot that would make my character a weekly regular. For instance, on the Bionic Woman, I was her niece Janie (her name was Jamie). My parents had died in a car or airplane accident but there were able to save me with bionics. Since she had two bionic legs, one arm and an ear, I would have one bionic leg (don't ask me how I thought I was going to run with one regular and one bionic leg), two bionic arms and the first bionic nose. Now, do you want to know the real irony of this story? In '97 I had nose surgery for a deviated septum (yes, I had them smooth down the sides too). I can smell pot roast being cooked down the street. Doug and I say I have the bionic smelling nose! Charlie's Angels was kind of the same scenario where I was orphaned but I was either Bosley's or one of the angels niece and I ALWAYS found the clue that solved the crime. This went on until I was about 9 although sometimes it was the Love Boat, Three's Company or some other cheesy show. The only show I would have turned down was Little House on the Prarie. That time in history did not seem like a fun time to live in. Refer to my previous blog entry on why.

When I was 10 we moved to Brenham, Texas. Brenham has a German celebration of spring called the Maifest. They have a junior and a senior Maifest with each having their own king and queen. If you have never been to Maifest, you are missing out. It is like a G rated Mardi Gras. I wanted so badly to be the Maifest queen. We moved to Brenham when I was too old to be the junior queen. But I thought I might have a shot at being the senior queen. I had my theme picked out. I had my train designed. I would practice walking around the house with a crown and used a baton as my scepter. Well, we moved again the summer before I was to start high school which blew any chance of me being the Maifest queen. I have never gotten over this. My girls now participate in Maifest. They love it. But the funniest thing is that they will ask me if they will ever be the Maifest queen.

When I was 12, I asked my dad what he did. He told me he was an investment banker. I had no idea what an investment banker did but I thought it sounded really cool. So I would play investment banker. Mainly, I pretended to be on the phone and tried to find babysitters for my imaginary children.

When I got into high school, I either wanted my own clothing store or to be a news broadcaster. I went off to college and ended up majoring in communications. Like many of my fellow gen xers, I ended up in a career that had NOTHING to do with my major. It took me a while to find myself. I did retail and hated it. Went into sales but hated that too. Stumbled into supply chain and LOVED it. Whenever I was frustrated at work, I would think maybe law school was the answer. I just think I would like saying I was an attorney and yelling "OBJECTION" every now and then. I also think I was more intrigued with the image and ego that came with having a law degree than the degree itself. But in the back of my mind, my long term goal was always to be a stay at home mother and wife.

I love my career. I love the messy kisses. I love the fact that I have complete and unconditional love for my girls. I love the fact that they are the product of both Doug and me. I love that I can see characteristics of both of us and then some that are unique to themselves. I love the excitement in their little voices when they've been in school and they climb in the car and say "Hi Mommy!" And I love the fact that Doug and I provide a safe place for them to fall when the world is a scary place.

But still, I ask myself "what do I want to be?" I want to be healthy. I want to be a cancer survivor. I want to be an inspirational voice for those who need someone to cheer them along in their cancer journey. I want to be a good friend. I want to be a person that people can speak highly of and know that I would walk over hot coals for the people I love dearly. I want to be here when my girls graduate from college. I want to be here to dance at their weddings. I want a deeper spiritual relationship with God. My cancer journey has deepened it some. And I do believe I had a good foundation before I was even diagnosed. But I think this might be a good blog topic to write on at another time.

On a lighter side, Doug has told me that all he ever wanted to be in life is tall (for those of you who don't know him, he is only a couple inches taller than I am and I'm 5'5''). I just laugh and tell him that he is so much more- smart, kind, considerate, grounded and a fantastic husband, father, and provider. I'm still holding out for that TV show, but for right now when Abbey asks me "what do you want to be?" my reply is "just what I am!"

Friday, January 30, 2009

A More Simple Time?

I am a very nostalgic person. I love scrapbooking and pictures. I can't throw away old cards, letters or any Christmas card with a picture! I love reminiscing with friends about funny things we used to do. My girls have that bug too. They love to hear stories about when I was their age or when they were babies.

So many times I hear people talk about when things were more simple or a more simple time of life. I wonder if there ever really was a more simple type of life. Let's look at this:

Anytime before air conditioning, indoor plumbing or cars??? Seriously, I can hear those who know me laughing hysterically at the thought of me living during these times. There is nothing simple about having to kill your own dinner! There is nothing simple about no air conditioning in the summer south of the Mason Dixon line!!!

The 50's? When I was 10, I went to go see Grease at the movies. I used to daydream what it would be like to wear poodle skirts, go to a drive in and do the jive with my prom date. Well, what I didn't realize is that women did not have the opportunities that they have today. Don't get me wrong, I am a proud stay at home mom (a.k.a. SAHM). But I am also the proud daughter of a female VP of Human Resources. I also don't think that any time where you have a bomb shelter and a severe fear of Russia would be classified as simple.

The 60's and 70's? Drugs, disco and really bad clothes. I rest my case.

The 80's? Big hair, shoulder pads and Reeboks. AIDS, cocaine and X were rampant, and a manic economy. Also, this is the time when I was in jr. high and high school. Can I say that there is not enough money or anti depressants in the world to make me go through high school again? Yes, there were some fun times and there are some people (you know who you are) that came into my life to make it all the better. I do miss the intensity of high school- everything seems so possible, your feelings are so magnified and everything seems to have a sense of urgency- or atleast that's the way it was for this drama queen. And I have to say, the music is AWESOME! But when I compare how I was to myself now, I would have to go with now. The "shop to you drop" girl still comes around occasionally (OK, about once a month) but I am also more sure of who I am. I also have a deeper spiritual relationship. I am more comfortable with my body- I embrace my curves and love the fact that I have had 3 children. It also helps that I have always been a late bloomer. When I was debating on going to my 20th high school reunion, my husband told me "you're hotter now than you were when you were in high school". And I thought I was pretty hotsy totsy then! But with age comes wisdom and that wisdom tells me that NO ONE looks good in shoulder pads or pleated pants!

The 90's- probably my most agonizing period. I LOVED college. Other than making a meal out of roman noodles and not being able to afford stamps some days, college was a great experience for me. However, I did not graduate with a skill or trade. I was a liberal arts major. Sadly, I realized after a graduated (in a very rough time to be looking for a job) that there was not a lot I could specifically do with my degree. It also didn't help that I was invited to 20,yes, that is the correct number, weddings after graduation. I started to panic that because I did not find a husband at Baylor, I was never going to get married. It also didn't help that Baylor is a marriage factory! I wish someone would have told me that God was holding out for the perfect man for me. Needless, to say, He delivered. I also had a lot of anxiety about my career. It took a while for me to find myself in that facet of my life. But out of all the job experiences I had, the one I have now is the best and most rewarding!

I have very few regrets in my life as of now. Yes, there are things I might have done a little differently or a situation I might have handled a little differently. But I am a big believer that both your joys and sorrows shape who you are. What doesn't kill us, makes us stronger! How many times have I said that to myself in the past 19 months? My cousin always teases me about my memory. She claims that I am making it up half the time but I PROMISE I'm not! Memories are just another precious gift God gives us. Hold on to them and cherish them.

But as for living in a more simple time? I like where I am right now. Technology is such an amazing thing. I am always blown away when one of my MANY doctors tells me about the new advancements in medicine. That is one of the many ways I know I'm going to beat this. Just think- 20 years ago AIDS patients were given a death sentence. Now they are living full lives with the right cocktail. I know that cocktail for my cancer is out there. Unfortunately, it is not a Cosmopolitan.

Cherish your memories, but embrace this time.

God bless you all! TFS

Wednesday, January 28, 2009

Hurry up and wait!



Welcome to the inagural post of my blog. Hurry up and wait. Hurry up and wait. I feel like this is the story of my cancer journey. Evidently, MD Anderson has found 3 potential donors that are 9 out of 10. What that means is that there are 10 antigens that they look for in a donor. They have found 3 people that are 9 out of 10. The next step is to search the umbilical cord registry. If they don't find a 10 out of 10 (the ideal situation), they will look at the 3 donors and decide which one is missing the least important antigen and go from there.

As far as my treatment, I am still on the list to receive the new lymphoma wonder drug. The target start date is Feb. 24th. My onc seems OK with this because my disease seems to be pretty stable and not going willy nilly all over my system. If we find a 10 out of 10 donor pretty quickly, and we need to pull the trigger, then I will get a more conventional, standard chemo. Either way, I really don't care which one I get. I'm just ready to get this show on the road. Doesn't this cancer know I have things to do?

I had the privilege of speaking to the Houston Junior League (I am a proud member) about my journey. My friend Catherine recorded it for me and I've been trying to upload the darn thing on Youtube for the past two days. It keeps telling me that it is too big. I KNOW that there are other videos bigger than that. Isn't technology wonderful???

Several people have been asking about how they can be tested to see if they are a match. This brings tears to my eyes every time I think that someone is willing to do this for me. It is amazing how God works. Just when you are having a crummy day, He comes along and places someone wonderful in your life that is willing to go through shots (after ALL the needles, I still hate shots) and make that sacrifice for me. Here is the donor 411:

Here is the complete version of being a donor. I hope this answers everyone's questions but if not, please email me directly at fordsellers@sbcglobal.net. I know that some of you are getting caught in the voice mail trap. I have a call into my coordinator to eleviate the problem.

If you are a registered bone marrow donor, you do not need to get tested because you are "already in the system". However, if you don't mind, please call the center where you were tested and ask that they fax your paper work to Stacy Kerr, my transplant coordinator. Her fax is 713-745-1285.

There are actually two routes you can go to get tested:

1. You can register as a bone marrow donor. You log on to www.marrow.org and enter the registry. The testing and registration is free. However, the results take a little longer. Also, by going through the registry, you are a registered donor and may be called as a match for someone else.

2. You can call LabCorp at 800-533-1037. This service lets you be tested for friends and family.
A. If you want to cut through the red tape, the cost is $150.00. Some insurances may still reimburse you for it or you can use your Healthcare reimbursement account (which conveniently started 6 days ago!). Should you decide to go this route, my diagnostic or CPT code is V59.02 . They will ask for this.
B. You can also go to your doctor, tell them you want to get tested for a friend and your doc can write the order for you. They will give you a doctors order for a low resolution typing. You will need to ask them when your results will be in. Call them on that day or after and ask them to fax them to my coordinator Stacy @ 713-745-1285. They will not send you the results, they send it to your doctor. This way, it should go directly to insurance and you won't have to pay anything. However, please call your insurance to verify this. It can be tricky and I would hate for anyone to get stuck with an outrageous bill. When you do talk to your insurance to find out what information they need and I will be more than glad to get it for you if they need more than my diagnostic code from above.


If you are a match, this is what it involves:

1. Ten days of shots to boost your stem cells
2. you will most likely have to do blood work after that so they can look for the markers that indicate you are producing stem cells
3. they will hook you up to an anphresis machine. Basically, it's like a transfusion. They take blood out of one arm, put it in a cylinder that spins it at a high speed. All the stem cells come to the top, they scrape them off like cream on top of milk, and freeze them. This process takes maybe 2 or 3 times. It is totally painless. The only thing is your get cold but they have wonderful heated blankets for you and if you have to go to the restroom, you have to use a bed pan. Out of all the things I've put my body through on this journey, this is by far the easiest.

The shots, blood work and procedures will all be paid by my insurance. The only out of pocket you might incur is if you decide to go through LabCorp. When they tested my sister, they mailed her a kit, she went to her own doc and mailed it back. It's pretty simple.

I know that I'm going to find a donor and kick this thing once and for all. Please feel free to pass this to anyone who was inadvertently left off.

1. You do not have to be the same blood type I am. I can also have my donor be male or female (although I really hope I don't grow a beard if my donor ends up being male. Ha!)

2. The maximum age to donate is 79.

4. Teens can donate but parents will have to go with them and give consent.

5. Anyone who has cancer in the last 5 years or any autoimmune disease is not eligible.

6. You do not have to live in Houston to be tested. However, if you are a match for me, you will need to be in Houston for 7-10 days to collect the stem cells. We will gladly put you up at our house and/or help out with the accommodations/travel expenses.

7. If you have already registered with M.D. Anderson for another friend or family member, you should be in the system. However, if you could make a call to let them know they have your permission to look at your tests to see if you are a donor for me, this might speed the search/elimination up.

8. LabCorp. vs. Registry- this is a very personal decision that only you can make. I have to have some treatment before my transplant so time is on my side. The registry is free and could help more than just me. However, you are making a sacrifice and with LabCorp, you do have more control over who gets your stem cells.

9. If you are currently breastfeeding, you need to ask your ob/gyn about getting tested. We are looking at doing the actually collection and transplant in the April/May area if we have a viable donor. I don't think you can donate while you are breast feeding but might be able to atleast get tested. Again, I am not a doc (although I feel like an amatuer oncologist at times!) so please clear it with him/her.

Some of you have asked if you are a registered organ donor, are you in the system. It is my understanding that organ donor is totally different from a bone marrow donor.

I think about all the things I'm thankful for- that it is me going through this and not my children, that I have such an amazing support system, and that I have the best medical care in the world, etc. I am also thankful that not once have I lost my faith in God. Somehow, I have not once gotten angry with Him or felt abandoned. I know He is always with me. Even in my darkest hour I can feel His presence.

God bless you all! I hope you have enjoyed reading my first post. There will be many more to come!