In honor of Emily Crawford
My name is Emily Crawford, I'm 29 years old and live in Chapel Hill with my husband, Rob, and dog Bailey. I am a nurse, and work in the Surgery/Trauma ICU here at UNC. I went to both undergraduate school and then nursing school at UNC, so have been affiliated with the University and/or Hospital system since 1999.
Rob and I were married in July of 2009. During the fall after we were married I began feeling more tired than usual. I had been feeling tired for about a year actually, but prior to the fall I was getting up at 5 am for work and planning a wedding so was often tired and just thought it was because I was so busy. Once the wedding was over and my fatigue increased, I was more aware of it. I was having night sweats and a difficult time regulating my body temperature (I was always hot or cold, never just right). And I was losing some of my hair.
These symptoms prompted me to have some tests done by my primary care doctor, Dr. Raupp, of Chapel Hill Family Medicine. I asked him to check me for hypothyroidism because I felt my symptoms might be related to that and I'd had borderline results with that in the past. These symptoms were very vague, and I think could have been overlooked by many patients and doctors (I had even overlooked them for a while). I also had mouth sores and feelings of fullness after eating even small amounts (which was because of an enlarged spleen), but I hadn't really noticed either of these things until Dr. Wood brought them to my attention during my first visit with him when he asked me whether or not I had symptoms that commonly present with CML.
My primary care doctor checked my thyroid, which came back the same as previous tests. He also checked a complete blood cell count (CBC), and my white blood cell count (WBC) came back slightly elevated - it was about 22,000 and the normal range is about 4,500 - 10,000. At first we just rechecked the level, and when it came back the same, he sent the sample to a pathologist that showed some, although not many, immature cells that shouldn't be there, something like less than 5 percent. The pathologist recommended just following up in a few months, but my primary care doctor really felt something was not quite right so pushed for me to have a Hematology/Oncology consult at UNC. I will forever be so grateful to him for making the push for that consult, as an early diagnosis I know has a lot to do with my good prognosis.
But, this was very scary, having to go to a doctor associated with cancer. Even if I didn't yet have a diagnosis, it really scared me. Fortunately my new husband was by my side. Rob and I came for our first visit to the Hem/Onc Clinic just about a week before our first Christmas as a married couple. It was all overwhelming.
We met Dr. William (Bill) Wood during our first visit. He was a Fellow at the time, and is now an Attending physician. He is fantastic; I am so so fortunate to have such a wonderful doctor. We were very nervous, and scared, and sad, and so many other emotions the first few times we met him. He said we would do some more blood tests that specifically tested for Chronic Myeloid (Myelogenous) Leukemia (CML) and a few other blood disorders.
We also met Brooke Hayes, a nurse with the Leukemia, Lymphoma and Myeloma Program, and Dr. Tom Shea, UNC Lineberger associate director, during our first visit. Everyone was so nice and comforting and really spent a lot of time with us, but especially Dr. Wood. I'm a nurse, so I have interacted with a lot of doctors and families, and I know I have one of the best doctors at our University. I'm so fortunate to have him as my doctor, and UNC is fortunate to have him on their staff. He's wonderful; I could go on and on and still not feel like I've given him the praise he deserves! During that week I called or emailed him and Brooke just about every day asking if the results were back, and although I'm sure I was driving them crazy they always were polite and more than happy to double check.
About a week later (December 23rd)Dr. Wood called me with the results. He told me that my blood showed the genetic mutation that is linked to CML. Oh, I was devastated. I'd looked up some information about CML over the past week, but still hadn't really grasped the concept that "this might be happening to me.”
Dr. Wood spent plenty of time on the phone with me, answering any question I could think of and reassuring me that CML has a great treatment option - Gleevec. We planned for me to come in soon after Christmas for a bone marrow biopsy and another appointment with him the first week in January to talk more about it, answer all our questions, and start a treatment plan. Needless to say, it wasn't the first Christmas we'd imagined as a married couple. BUT - I'll also say that this truly tested our strength early on, and in a way, we see a blessing in that.
The bone marrow biopsy was next. Rob brought me and I’m sure I was the worst patient they've ever had, which is horrible since I'm a nurse! I cried before getting an IV (I've started what seems like hundreds of IVs myself, but had never had one!). The nurse was wonderful and very patient, and didn't give me a hard time because I should have known better!
Physician assistant John Strader did my bone marrow biopsy, and he is also fabulous! If he wasn't driving a giant needle into my hip bone I'd have loved my visit with him! But, I am sure no one could have made that procedure more comfortable than he did. He had lymphoma a while back, is now in remission, but has experienced bone marrow biopsies himself. So, while it definitely hurt, he made it as bearable as possible. And after experiencing it, I'm in awe of patients, especially children, who have gone through the same procedure and much more.
A week later we met with Dr. Wood, and he spent about 2 hours with us going over our huge list of questions. We left that meeting with a lot of answers and knowledge and felt ready to begin this battle. That day I started taking Gleevec, which is a FANTASTIC drug! It's been FDA approved since 2001. It is very specific oral chemotherapy drug, so while I do have some side effects they aren't as severe as most chemotherapies, and especially intravenous therapies. It also has very promising results in studies so far. It's been studied for a little over 20 years and many of the people that began taking it are still taking it now with no major drawbacks. So that's very good news for me.
The first month or so was pretty rough with the Gleevec. I had a number of side effects - a lot of fluid retention, nausea/vomiting, fatigue like I'd never known before, and terrible muscle cramping and pains. Dr. Wood and Dr. van Deventer (who became my Attending during my first 6 months of treatment) were patient and diligent in trying to help me alleviate these side effects. I was prescribed other medications that helped, and while I felt like a walking pharmacy it was so helpful because I could bear to work and do life things. The side effects of Gleevec are related to the number of leukemia cells, not the drug itself, so these all got better with time. Now I am taking a small amount of a medication to deal with the fluid retention, and the rare nausea medication dose, but other than that just Gleevec!
We feel VERY fortunate to have such a wonderful drug/treatment option for me. Being so young at diagnosis we obviously were concerned about how this leukemia would affect all of our life decisions and plans. But Dr. Wood has assured us that we’ll take those plans as they come, and he has given us hope that our lives can be nearly as we hope and want – just maybe a little bit different, a “new normal.” One of my biggest concerns about my diagnosis was my age. Most people who have CML are in their 60s or so, and in fact UNC has very few people my age who have CML. I was concerned that while Gleevec does have promising results, I'll hopefully need to take it for a lot longer than folks who are diagnosed in their 60s. So far we don't have enough data to predict that far down the road, but we know we have a good chance with such a fantastic drug. Also, there are definitely more treatments that are currently being researched and I think are realistic possibilities for my lifetime, which is part of why SWAT is so important to me... I'll get to more on that.
I saw Dr. Wood weekly for about 4-5 weeks, then monthly through about the 4th month. Around March I brought my parents to meet Dr. Wood as well. Again, he took his time and patiently answered all of our questions, and my parents were so happy to have met him. I may be an adult and married, but my parents still look after me and want to meet my doctors! They also couldn't be happier with my care. Dr. Wood is now my Attending and we really look forward to working with him for as long as we can! I feel safe, and I feel cared for, and I know that he's always looking out in my best interest and stays on top of the best treatment options, etc. He's the best.
So, Sisters Who Are Tough (SWAT) for Emily. I must first say that I have the best parents, siblings, friends and husband ever. This has been a tough year. It's been tough getting a diagnosis of CML, starting treatment, and adjusting to this drastic change in my life that no one ever plans for or thinks is going to happen to them. I have been on a roller coaster of emotions and this wonderful support system I have has kept me grounded and strong through this. I can in no way take credit for it myself. There is no doubt I wouldn't be this strong without them, no doubt. I am so fortunate and count my blessings daily for such wonderful family and friends.
My mom is in a walking group with some of her friends, and her best friend (and my "other mother") is Jan Capps. Jan and Steve Capps serve on the Board of Visitors for Lineberger; I have basically known them my whole life and can't think of many memories that don't include their family. Jan's daughter - Morgan - is my oldest and one of my best childhood friends. I've known them since I was 5.
Jan and my mom's walking group has walked in the past and raised money for cancer, but this year Jan decided they should walk in support of my mom and in honor of me to raise money for leukemia research! They called their group SWAT for Emily. Morgan, and my other best childhood friend, Katie Storrs, had also been talking of doing some sort of walk to raise money, so they decided to get a group of my friends to raise money as well.
There were 8 of my mother's friends including my mom and Jan (dubbed the Mama Hens) and 10 of my friends - my best friends - including myself (called the Spring Chickens). Everyone committed to walk 250 miles by November 6 and on November 6 we'd walk 13.1 miles (a half marathon) - the moms did it in Charleston and my friends and I went to Wrightsville Beach. The goal was to raise about $5,000 and an anonymous donor from Lineberger would match that $5,000 for a total of $10,000. Everyone raised more than required, and we ended up raising over $10,000 so with the anonymous donor, over $15,000 for leukemia research in my honor! Amazing.
SWAT has really meant a lot to me, and my family. It's just made a huge difference knowing I have such a great support system, and that so many people care about me and my family. These 17 women who did this for me are each incredible and have made a huge difference in my outlook this year. They've given me courage, strength, hope and have loved me during some of my lowest times. An example: I was really concerned that I wouldn't be able to do the 13.1-mile walk. I'd voiced this concern to my husband, and Morgan and Katie. They all said just do the best you can (well, Katie said I better do it!). In March I was at Wrightsville and remember it taking all of my energy to finish one lap around "The Loop" with my mom and Jan. That was 2.25 miles.
I was feeling like I had more energy, but 13.1 miles is a lot! We started out walking pretty briskly, but by about mile 9 or 10 I was really feeling tired. These girls encouraged me to finish, and we slowed down but we all finished the walk - and that to me really showed me how much I've improved over the past 11 months. That felt really good. SWAT has really meant a lot to me. At times it feels a little overwhelming to have so much attention on myself, but this experience has taught me how important awareness is, and it's also showed me how much support I have, and how lucky I am.
Also, I feel that CML and other blood cancers have a real chance at new treatments or more improvements being developed in my lifetime. That's important to me because I really feel like money we raise CAN make a difference, and I plan to live a very long time with CML, so I really think I could reap the benefits of those changes. That is all very exciting to me.
This year has been challenging. It's tested my strength, my relationships, my faith, and my perseverance. I am doing really well with my treatment, everything is going exactly as it should be, and hopefully I'll achieve full remission sometime by March. That's the projected time anyway.
I am so thankful for such a great drug and treatment that is going to allow me to live with CML for the rest of my (hopefully long) life. But, it's the people who have truly given me strength. Dr. Wood and everyone at Lineberger couldn't be more wonderful. My friends have lent me countless shoulders to cry on and truly lifted me up over and over again. My mom, dad, brother and sister have been just been the best - they've given me so much support and loved me unconditionally. And my husband has proved to be the best and strongest partner I could have ever hoped for, he's been by my side at every moment and has really toughed out this trying first year plus of marriage. I am so fortunate to have such a wonderful support system and to be treated at such a phenomenal facility. I don't think I could have a better set of circumstances and resources with this long, tough battle to fight, and for that I am forever grateful.