Monday, May 18, 2009
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!
Friday, May 1, 2009
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!