Fighting for family: Erika

As of last Friday, the Central Texas chapter fundraising total for this season is up to $315,022 (Cycle: $59,461; Triathlon: $146,188; Run: $80,923; Walk: $28,450). Even though I've already completed my event, I want to continue sharing stories I read about with you.

Erika, 26
Redmond, WA United States
Living with ALL for 2 years and 6 months

I was in Maui when the symptoms started. We were there for my brother's wedding. I had a 3 year old daughter with the love of my life and finally after years of waiting, he proposed! Thinking it would be my turn to start planning my wedding, I was in store for the fight of mylife..... Cancer.

After 3-4 months of sickness and pain, I was diagnosed with ALL. I was devastated. I didn't think I could stand a chance! The next day they started the chemo. It was so scary!! I had no idea what was in store. My first 10 months of chemo was in the hospital. I pretty much lived there. My daughter referred to it as "mommy's apartment." Every night, as I would say goodbye to her, I would hear her cry all the way down the elevator. It broke my heart. I felt so much anger.... this was not supposed to happen to us. I kept thinking of the mistakes I had made in life, wondering if this was my punishment. It's really hard to thinkof my daughter without her mother, so I decided to fight! I would lie in bed and literally talk to my disease and tell it to get away from me. I fought with all I had.

I still had many days where I felt like not fighting anymore. It was exhausting. But I would just look at my family and everything they were sacrificing to keep me going, and I refused to let them down. So, I would get the tears out..... and fight more!

After about a year of constant going to the hospital for blood and platelet transfusions, bone marrow biopsies, a sick liver, and weight loss, I got to live at home again. I was in remission (still am) and was ready to face the next step: maintenance chemo.

I am now trying to work full time, and am taking chemo pills every night. I still get sick, and occasionally have to be in the hospital for low white blood count. I just got pneumonia, but I am Alive!!! It's hard to miss a lot of work, but I'm fighting that too!!

The hardest things these days is comparing the person I am now to what I used to be. I don't have a lot of energy, I'm angry sometimes, I'm broke, and I'm tired of all of this!! I feel like I let people down, because I'm not always the old "Erika." The one who was a great employee, fun mom that now never has energy, and fighting bills every day gets really old!!

But I am so lucky to have the family I have - they helped me so much- and my daughter is just as tough as I am. She fought right along with me. She is an Angel. I love her so much.

November will be 3 years from my date of remission, and the month where the chemo stops. I can't wait. And I am just waiting to planthe wedding that I have waited so long to finally plan. Life is slowly piecing itself back together, thanks to my family and prayer.

Grace of God: Lynn Robinson

Lynn and I are going to the Country Music 1/2 Marathon together. I never would have guessed, but she is a cancer survivor! The whole nine yards. I am so blessed to be able to share her story with you today. I imagine that you'll be riveted to your seat as I was.

July 29, 2004

You have Hodgkin's Lymphoma? WHAT IS THAT? CANCER?

And that's where it all began. Well, almost. It actually began about a month earlier while I was busy getting ready for my daughter Holley's third birthday party. I had been feeling very tired and just wanted to lay down and take a nap. HIGHLY unusual for me. I thought, "Wow, being over 40 and chasing after a toddler is really wearing me out. I need to start exercising and getting in better shape." The latter was true regardless of my diagnosis. I didn't experience the normal symptoms for Hodgkin's - sweating, fever, chills, losing weight, intense itching, or a family history of pesticides and heavy chemicals. What I did have was the feeling of something being caught in my throat, similar to chewing a piece of carrot, celery, or possibly a piece of steak, and not chewing it enough before swallowing and feeling like it was lodged in the throat. But the feeling didn't subside. In fact, it went on for a few weeks before I decided that I should probably check it out.

You must understand; I was the type of person who was never sick or ever went to the doctor while growing up. In fact, I didn't even have a doctor to go see when this occurred and I had to look up a doctor on our insurance to make the initial appointment. The week before I had my first doctor's appointment, I had some discomfort in my neck and throat area when I laid down to sleep. It was almost like I was being strangled, but without any hard force. It was hard to swallow and breathe.

Well, I got to the doctor's office and assumed that it was a swollen gland and I would be given an antibiotic and sent away. That was not the course of treatment that occurred. In fact, the doctor that saw me thought it was my thyroid and suggested I go to an ENT specialist. Yet another new doctor to try and find! I went to an ENT and wasn't scared because it didn't sound serious and might explain why I had been so tired and couldn't lose any weight. Again, I chalked it up to being middle aged. Well, after the ENT felt my neck and glands, he said it might be my thyroid and told me to go get an ultrasound to find out. Off to yet another office for the ultrasound and some more waiting for the results, which showed that mythyroid was just fine. Hmmm, so why couldn't I lose any weight? Back to the ENT for more tests. After viewing my new ultrasound, my ENT said it showed enlarged lymph nodes. He wanted to take a needle biopsy to investigate.

Now, I'm not much into needles, but I do have a high tolerance for pain. He inserted a lengthy needle in my neck and then withdrew some fluid to be sent off the the lab. Another couple of days of waiting, which started to bother me since it no longer seemed simple. Certainly though, nothing like the thought of CANCER crossed my mind. Finally, the lab results were back in and my doctor asked if I would come back for a CT scan. Following those results, I was asked to come back for a excisional biopsy in my neck. Hmmmm, now we're cutting through skin and I'm not too sure what's going on. So, I wait for what seemed like an eternity for those results to come back. When they came back is when I heard for the first time: "You have Hodgkin's Disease. You need to see anoncologist."

I don't really think the diagnosis sunk in for several days. I was really in shock after hearing the word mentioned. I immediately got on the internet and read all the articles I could get my hands on. I also prayed fervently that it was not really cancer. I am the type of person that likes to have too much information as opposed to not enough. Although, it really frightened me to read a lot of the articles. What exactly is chemotherapy? What is radiation? What are the effects? Will I die? Who will take care of my precious daughter? Will I lose my hair? Will I be sick? The list went on.

I reached out immediately to my family, friends, and church for support. I was raised in Houston and my family still lived there, so I decided that M.D. Anderson was the place to go for my treatment. I was able to get on their schedule in a very short amount of time. Nothing short of answered prayers, which became a pattern throughout my journey.

I was admitted to M.D. Anderson the end of August 2004 for a battery of tests: CT scan, MRI, PET scan, X-ray, lab work, and bone biopsy. Don't let anyone try to convince you that this isn't the most painful experience, including natural child birth, that you will ever experience in your life. After a week of tests, my arms looked like a heroin addict. I had been poked and prodded so much. OH and yes, I did get a CVC line in my chest. Basically, a plastic tube connected to my heart and veins through which my drugs were given during chemotherapy. It stuck out of my chest like an extra appendage. I had to keep it in for six months and was not allowed to get it wet. No swimming or hot tubs for me! It was saran wrapped before every shower to keep it dry.

Thus began my semimonthly car trips from Austin to M.D. Anderson in Houston. In a nutshell, I was given six rounds, i.e. twelve weeks, of chemotherapy injections through an IV. I was on the ABVD regime, a combination of four very toxic chemo drugs, and it would leave me very sick for 2-3 days post treatment. To be perfectly honest, I was retching my guts out. I was especially tired as the weeks wore on. The driving back and forth with my three-year-old (she's a trooper) for those numerous trips to Houston got old fast. Not to mention, the miles on the odometer and the bills from the gas stations were both rocketing up.

I did lose my hair. It was one of my lowest moments. I did get a snazzy wig and it sure was nice not having to shampoo my hair every night. Folks, your head gets pretty cold without any hair on it! I became an expert at receiving injections of any kind without flinching. I bought all the cute wool caps, scarves, and hats, but ended up never using them since I was more comfortable wearing my wig. It gets pretty hot under there though. My daughter enjoyed playing dress up with her clothes and mommy's wig on many occasions.

After my third round of chemotherapy, I did become neutropenic and developed sepsis - a blood infection that is often deadly and causes major organ failure. I developed a 107 degree fever. Bet you didn't know it could get that high. My body started shutting down. Talk about literally having a brain meltdown. I was clinically dead in the ICU, but through the GRACE OF GOD, I survived this near death experience. Perhaps I will share my out of body experience next time as it truly was unbelievable. My heart rate was dropping, my pulse was out of control, I was on a ventilator to breath, and I had more wires and monitors attached to me than seemed possible. I didn't eat for about seven days. I was only able to drink sips of cold fruit juices. Talk about a great liquid diet. Not exactly what I would recommend to lose about twenty pounds because it came right back after I recovered.

I was in an Austin ICU for six days before I was stabilized enough to be transported to M.D. Anderson. A bumpy ambulance ride, strapped to a stretcher for three hours. It was another six days before I was finally dismissed from the M.D. Anderson ICU. I was so tired of being awakened at every other hour to have breathing treatments, vitals taken, and X-rays. I really wanted to take a real bath, if you know what I mean.

My oncologist decided to take me off the deadly toxins in my chemoregime since my lungs had been damaged and she didn't want to take any further chances. I managed to complete my chemotherapy and my radiation. Everyday, Monday through Friday, for one whole month. And on April 1, 2005, I was finished with my treatment. However, I still travel to Houston every three months to have my battery of scans, labs, and tests done to make sure everything is fine. I am happy to report that I just finished my first year of post treatment and I got a clean bill of health!

I am participating in the Country Music 1/2 Marathon in Nashville the end of this month and I am feeling better than I have in a long time. I feel very blessed to have had the support of many prayer warriors, many of whom I don't even know, that were praying for my recovery all throughout my treatment. God is Good and all blessings do come from him. My mother and stepfather were wonderful caregivers throughout my experience. My mom went to every appointment with me while my stepdad took care of his granddaughter. My friends and family were awesome and truly a blessing.

I am trying to give back to The Leukemia and Lymphoma Society by volunteering to be a mentor for the Team in Training event (an annual sports endurance event fundraiser). I am also volunteering my time for First Connection. It is a fabulous program where folks that are diagnosed with the disease can call and get paired up with someone that has their diagnosis. It really has been life changing to survive and be able to give back.

Life is never taken for granted and you learn to take each little thing as it comes. Enjoy today for tomorrow you never know what lies ahead.

Phil 4:13 I can do all things through him that strengthens me.

Not Once, But Twice: Didi Smith

I worked with Didi for three years. She is gifted with the ability to make work go by fast and she was the one of the best supervisors I could ever ask for. When I told her about what I'm doing, this is her little contribution for the readers.

My niece (she's 13 now) has had leukemia twice. Once when she was 3-1/2 (cured by brutal chemo for over a year), and then unfortunately she was one of the rare cases that actually developed a different type of leukemia last year. She underwent bone marrow transplant this summer and is doing very well now. Both times all of the staff, doctors & nurses at the Children's Cancer Hosp. in Dallas and Ft. Worth were amazing. Her outlook is good.

Saturday Morning #10

Regular training during the weekdays have petered off these last two weeks. Redemption with a speck of determination impelled me to publicly commit to 4 miles every day next week.

I completed 13.1 miles this morning. It took a good 3 hours and 50 minutes, i.e. an average of 17.5 minutes per mile. My legs felt like molten lead that very last mile, but now I know I have the endurance to make it through the entire race. Now, I need to build up the stamina to maintain a faster pace and cut down my race time.

Jana picked me up bright dark and early. 5:45am, to be precise. Great songs were flowing out from the speakers; Jana's personal praise music CD guaranteed that morning grump wouldn't stick around. We broke off as we walked out of the parking lot, the pace groups becoming distinct as we huddled together to keep from becoming car fodder.

Half an hour later, Marie and I were pleasantly surprised by Monica stepping out from her car. Daylight saving and the office flu had combined into a lethal overdose and she woke up an hour later than usual. She displayed the tenacity and resoluteness I've come to expect from her and jumped right in with us. And three hours later, she made up the two miles she missed and finished the 1/2 marathon at the same pace I did. Which goes to show that age is not a valid excuse.


4/8 Monica, me
We had a couple silly moments whenever we jaywalked across busy roads to be on the safe side. I promised I would keep the guilty parties anonymous, but it suffices to say that crossing streets did not take much of our time. Jeanette gave us handmade bracelets that said "13.1" as we completed our 13.1 mile route. Felt energized as the fact sank in. Estatic!


4/8 We ran past the Eiffel Tower
Jana and Theresa told us that curbside fundraising at the Arboretum was rather dismal. The reception provided by the drivers was, simply put, unfriendly. It was surprising to hear after my own experience; I couldn't stop thinking of the verse, "It is easier for a camel to go through the eye of a needle than for a rich man to enter the kingdom of God."

Lynn's a consultant for Cookie Lee (jewelry). She and several friends are having a fundraiser Monday night, where they will donate a percentage of their proceedings to the Leukemia and Lymphoma Society. Her lymphoma has been in readmission for a year; she'll be contributing a personal story soon. Mitzi's planning to have a garage sell; I need to ask her if we can combine our efforts.


4/8 Marie, Angela, Lynn
Warning: some gushing ahead. Several weeks ago, Monica was having lunch with her friends from Emmis Austin. She mentioned that I was having a slow moment in fundraising and they really came through! Thus, I am now only eight hundred dollars away from the fundraising goal! My fundraising deadline is April 17th. If you can donate any amount, please don't hesitate.

A Purpose For Everything: Jeanette Spears

I found out during our Saturday morning training that quite a few people have very personal motivation to be part of Team in Training. Jeanette, our coach, is one prime example. She has been a cancer survivor the last year and half and just came out of surgery in January.

I moved to Austin in 2000. I didn’t know a soul. Be it conscious or not, I was looking for a place I would fit in. I was always active, but had never participated in any type of formalized athletics since high school. I was blessed to have been introduced to a wonderful group of women who peaked my interest in triathlons and running. It truly became my life.

As I was training for the Danskin triathlon in 2003 I had a serious bicycle accident and shattered my collar bone. I was sidelined for many months. I didn’t want to give up my involvement in this new world I had discovered, so I would just show up for practice even though I couldn’t physically participate. That’s when I began studying the sport and getting certified. I was eventually asked to stay on as a coach. That is how my coaching career began.

In May of 2004 I was diagnosed with Colorectal Cancer. Once again, I was sidelined from participating but still felt compelled to stay involved. I would show up and coach with my chemo pump and iliostomy. The only way they could keep me away was to put me in the hospital.

During this time I met a wonderful person who worked for the Leukemia and Lymphoma Society. She suggested I look into coaching for Team In Training. What a great opportunity this would be. Not only would I do something I loved but I would be involved with people trying to make a difference in the lives of cancer patients. People say there is a purpose for everything. Maybe this is mine.

2/2 Sandie, Brenda, Jeanette, and Bailey