One year ago today, on Friday the 13th, I was diagnosed with leukemia. Very rough times lead up to the event. I had felt a little better when I was on the steroid prescribed by Dr. Bennion. However, I was still extremely fatigued. I don't know how to adequately describe how tired I was. I couldn't do anything! I took a bath each day (I was too tired to shower). When I was done bathing I would wrap my hair in a towel, wrap my body in a towel, and head straight for bed. It took 2 hours to recover from my bath. I couldn't clean, do laundry, or prepare food. My mom, dad, siblings, visiting teachers, friends, and neighbors helped me so much. My mom did a lot of cleaning and came up each night to make sure Kaden and I had dinner. She and my dad helped with getting Kaden to bed each night and to school each morning. I did a lot of sleeping.
One night I was very concerned, my forearms went numb and some other things were going on (I don't remember what). I called the on-call ENT, Gordon Wood, and talked to him about what my thyroid issue would and would not cause. I hung up knowing that something other than my thyroid was causing my problems. Back to Dr. Clark I went. Dr. Clark had instacare come and draw my labs. The results showed my hematocrit (HCT) was 20, my platelets were around 15, and my white cells were normal. Finally, the reason for my extreme tiredness! I was running on a 1/2 tank of blood. By this point, Kaden had pointed out to me that I had bruises all over my legs. Platelets around 15 (normal is 150+) explained the problem. So, I knew what was causing my problems, but didn't know what the problem was. Each day, for several days, I went in for blood work to see if my counts changed. Some days my HCT had gone up a little and some days my platelets had gone up, but they were always extremely low. My white blood count was always normal. I recall talking to Dr. Clark about my concerns that I had leukemia or lymphoma on several occasions. He listened to my concerns and I could see him thinking, but my white count was always fine. It's the white count that sets the alarm for leukemia.
I think my concerns got Dr. Clark thinking, so he had a hematologist look at my blood slides. The hematologist said he thought my blood was being "attacked" by a virus and that he didn't think it was leukemia. At this time, H1N1 was a big concern and also a virus that doctors were still learning about. Each day, for 2 weeks I either went in to Dr. Clark's office or called him on the phone. Actually, his nurses usually called me each morning. One night when I was having some problems I called the number Dr. Clark gave me so I could get a hold of him after hours. It was the hospital number you call for on-call doctors. The receptionist was not too nice and was adamant that she needed to call the on-call doctor and that Dr. Clark would not answer. I told her to try Dr. Clark, that I knew he would answer a call from me, and if he didn't she could call the on-call doctor. After much persuasion she finally paged Dr. Clark, of course, he answered. He made sure he was always available for me.
Days came and went and still no improvement. My labs stayed the same and I started feeling worse. Dr. Clark talked to me a lot about having a blood transfusion, but I wanted to wait. My grandma had one many years back and contracted Hepatitis C. That fact made me hesitant. One day I had a horrible headache. I couldn't stand to open my eyes or hear sounds. I imagine it's what a migraine would be like. I remember my dad was home from work or had been calling me from work to check on me. He knew how horrible I was feeling and that I needed help getting some lunch and getting into the doctor. He got in touch with Cami and she brought me some lunch. She also took me into the doctor. He thought I had a migraine and prescribed me some pain medicine - that I never did fill. Labs were drawn and my HCT and platelets were still low, white cells were normal. I remember Cami asking a lot of questions, but I don't remember what. We talked about a blood transfusion again, I declined. I finished my steroid and continued taking my synthroid.
One night I went and played volleyball. It was region-playoff time. When it was my turn to serve, I would have to take a break between each serve. I would sit on the floor during any little break we had. My friend Marie wasn't sure I should be playing, but by golly I was determined to play. I did finish the games. The next night, Thursday, November 12, my visiting teacher brought dinner and movie for me and Kaden. It was a good dinner. My mom came up and helped get things straightened up. Kaden and I went to bed without watching a movie. I woke up around midnight feeling horrible. I went in to use the bathroom and could not sit on the toilet for long. I sat there and cried and moaned and ended up laying on the floor hollering for Kaden. He never heard me, and I was not being quiet. Somehow, I made it to my cell phone, went back into the bathroom and ended up on the floor again. I called my mom and she and my dad came up. I was not in good shape. My dad went and got Mike so they could give me a blessing. The only thing I remember was being blessed that the doctors would be able to find out what was wrong. I tried to sleep in my bed, but got too cold. I turned up the heat, to 76, and went and laid on the living room floor with my blanket over the heater. I was convulsing uncontrollably and asking my mom to turn up the heat. She called Dr. Clark and he thought my issue with not being able to stay on the toilet may be related to my blood pressure. He told my mom that the ER was an option and that we had to decide what to do. My mom told me that it was time to go get a transfusion. My mom, dad, and I headed to the hospital. Kaden was still home in bed with Mike or Cami aware that we were gone (I think).
We made it to the hospital and my dad pushed me in on a wheelchair. I could not stand to walk or stand or sit up. I was not a pleasant patient. I snipped at the nurse when we were in the waiting. Something like "I can't sit here anymore. What is taking so long. Just get me into the dang bed." I actually probably swore at her. I don't remember for sure. Once I was settled, my dad went home to be with Kaden. My nurse and I were not good friends, until she found out what my blood tests were showing and she had to help me with a portable toilet because I kept exploding blood (that's the nicest way I can put it). The doctor came in and talked to me several times. The last time was to tell me and my mom that per Dr. Ben-Jacobs (the oncologist in Logan) orders, I needed to be transferred to LDS Hospital. I remember my mom asking what they thought the problem was, and the doctor saying leukemia. I remember the look on his face. I already knew that was the issue. The options were for my parents to drive me down, to take an ambulance down, or to be life flighted. Because of my exploding blood issues, we were advised to go by ambulance or air. The doctor didn't want my parents to get in a situation where I was getting worse and they didn't know what to do. So, my mom and I loaded on the ambulance. Actually, they don't usually let others travel with the patient, but they let my mom. She rode up front and I rode in the back with an EMT name Mike I think.
The ride down was not wonderful. The ambulance was not very clean. I was actually surprised and disgusted by how dirty it was. At one point I told the EMT that I thought we were going to get asphyxiated by exhaust. I also really wanted to ask them to stop at Chevron so I could empty my bladder, but I knew they wouldn't and so settled for a bedpan. While we were on the ambulance, my dad had checked Kaden out of school, gathered some things for my mom, and headed down. They were not too far behind the ambulance. Once my mom and I got to the hospital, everything was a rush. The EMTs had to take me to the bone marrow clinic on the 8th floor. I couldn't believe how large hospital was. It felt huge! They were ready for me on East 8. Carrie was the contact person and she was right there showing the EMTs where to take me. They wished me well, left, and Carrie took over. My mom was told that I would spend most of the day getting tests done, and I did. I had my tri-fusion line put in at angio. I had a colonoscopy to find out why I was exploding blood. I had a bone-marrow biopsy. I had an MRI. I had a cat-scan. I was tested for CNS disease (leukemia in my spinal fluid). I had lots of blood work done. It was a big blur of a day. I knew I had leukemia, probably burkitt's, and that it was very aggressive. My blood was 75% leukemia cells. They started me on chemo right away.
It was Friday, November 13th. What a fitting date! It was also my sister Angie's birthday. My niece, Brooke, told Angie something like, "I am sorry you had to find out Melanie is going to go bald on your birthday." (Ignore the misplaced modifier on that one, it's a quote.)
. . . to be continued . . .
Much love,
Mel
Saturday, November 13, 2010
Tuesday, November 2, 2010
Life is Good
I had my labs drawn on October 25. Everything went up! With the exception of my platelets, everything was in the low-normal range. My platelets were 120; they are slowly making their way to the norm of 150. It will be interesting to see what my labs show on Nov. 10. There seems to be a pattern of my numbers being higher when I get my labs done at Logan Regional as opposed to LDS.
Overall, I am feeling well. I do tire easily; however, I push myself through it so I don't stay in bed too much. My energy has improved. I have issues with nausea frequently, but not as much as I used to. Every month or two I have an episode of being really sick to my stomach for @ 3 days. My latest episode was last week. I am always thrilled when it ends! My latest joy has been working on getting back into a regular exercise routine. I know my doctors were excited that I gained some weight, but I was not! I know a lack of consistent exercise is my biggest problem.
I have had a very difficult time getting back into a good exercise routine for a couple of reasons. The biggest reason is that my dear friend and running/walking/workout buddy Anna moved. She moved to Colorado while I was in the hospital and I have missed her terribly! Actually, when my mom and I drove around the corner at Maverik on our way home for good, my first thought was "Anna is gone!" I cried a little bit then and have a few times since. Anyway, exercising is much easier when you have a buddy. How lucky I am to have my friend Carmen. She has been a good friend of mine for years and has been helping me get back into gear. I am so grateful for her encouragement, motivation, support, understanding, and everything else. I just love her guts!
Volleyball once or twice a week has also been helpful and so much fun! My first couple of weeks were rough: I couldn't serve the ball over the net overhand or underhand, my balance was really bad so I had a difficult time following the ball, my body didn't move when and where I wanted it to, my timing was poor, and I couldn't really jump to hit the ball when at the net. Oh how frustrated I was! Luckily, I have been able to work through the frustration and realize the progress being made. I finally served the ball over the net, overhand!, on the short court. Eventually, I served the ball over the net, underhand, on the long court. Now, or at least last time I played, I could serve the ball overhand on the long court. Such a victory! Everyone cheered and it made me feel great. My balance and timing have improved as well. I can even jump a little and hit at the net. I recently went to a doctor to have my knee looked at (I will explain in a moment) and he told me I was fine to play volleyball. Today I went to physical therapy for my knee. My therapist told me I shouldn't play volleyball. I am choosing to listen to my doctor.
Now for my lovely knee. I remember my knee hurting a little before my leukemia. It hasn't bothered me for the last year. Possibly because I have been bedridden! As I have worked around the house, gone running (very little), gone up and down stairs more, and tried lunges at aerobics I have noticed an intense pain in my knee. It doesn't throb after, it doesn't swell, and it doesn't hurt to touch - but, oh how it hurts when I have any forward-pressure motion (for lack of a better explanation). I got an appointment with Dr. King last week. My x-rays looked good - spacing was fine. My range of motion was okay and I didn't have pain or tenderness when he did his exam. Dr. King feels that the issue is related to muscle atrophy. Makes sense to me. The cure is to strengthen the muscles that support my knee. Physical therapy it is!
My first physical-therapy appointment was today. My physical therapist (PT) is a nice enough guy. Not very personable, but nice. His exam left me feeling like a wimp, a little discouraged, but hopeful and full of insight. He watched me walk and said I favor my right leg. He felt my knee caps as I moved my knee. He checked my flexibility and took some measurements. He checked my strength and I realized how much stronger my right leg is than my left. Weird! In my soccer days I played left wing and kicked with my left foot. My PT had me do some motions on a small stepper - holy ouch! The verdict: my quad muscles are not supporting my knee (atrophy), especially my inner quad muscle, resulting in my knee cap shifting (intense pain). Also, my left hip is very weak. *** Light Bulb On *** Ding, ding, ding! Can you say hematoma; i.e., the abnormal buildup of blood in an organ or other tissue of the body, caused by a break in a blood vessel. Hello!!! Remember those days? Oh how well I do! Massive bleed in my left hip, horrible swelling in my legs and feet, bruised from left hip to left toes, walker, pain, pain, pain, morphine, pain pump, pain, etc. I completely get my current problems: stairs are still a little tough, balance is still off, my right leg supports me better, my left leg gets fatigued and sore faster than my right. I am glad I get it now and for once will be sticking with my physical therapy. ***sigh***
Really, life is good. Not too long ago: I couldn't walk up or down the stairs alternating feet. I couldn't get out of the bathtub by myself and actually fell several times. I had to use the electric cart at the store. Wherever I went I had to wear a mask that covers most of my face. I couldn't wear my contacts. I slept a lot. I ate around 900 calories a day because I couldn't handle anymore. I hated chocolate and anything sweet (I wouldn't mind that one now). I couldn't live at home. I had to go to clinic in SLC at least once, often more, every week. Yup, life is definitely good.
Much love,
Mel
Overall, I am feeling well. I do tire easily; however, I push myself through it so I don't stay in bed too much. My energy has improved. I have issues with nausea frequently, but not as much as I used to. Every month or two I have an episode of being really sick to my stomach for @ 3 days. My latest episode was last week. I am always thrilled when it ends! My latest joy has been working on getting back into a regular exercise routine. I know my doctors were excited that I gained some weight, but I was not! I know a lack of consistent exercise is my biggest problem.
I have had a very difficult time getting back into a good exercise routine for a couple of reasons. The biggest reason is that my dear friend and running/walking/workout buddy Anna moved. She moved to Colorado while I was in the hospital and I have missed her terribly! Actually, when my mom and I drove around the corner at Maverik on our way home for good, my first thought was "Anna is gone!" I cried a little bit then and have a few times since. Anyway, exercising is much easier when you have a buddy. How lucky I am to have my friend Carmen. She has been a good friend of mine for years and has been helping me get back into gear. I am so grateful for her encouragement, motivation, support, understanding, and everything else. I just love her guts!
Volleyball once or twice a week has also been helpful and so much fun! My first couple of weeks were rough: I couldn't serve the ball over the net overhand or underhand, my balance was really bad so I had a difficult time following the ball, my body didn't move when and where I wanted it to, my timing was poor, and I couldn't really jump to hit the ball when at the net. Oh how frustrated I was! Luckily, I have been able to work through the frustration and realize the progress being made. I finally served the ball over the net, overhand!, on the short court. Eventually, I served the ball over the net, underhand, on the long court. Now, or at least last time I played, I could serve the ball overhand on the long court. Such a victory! Everyone cheered and it made me feel great. My balance and timing have improved as well. I can even jump a little and hit at the net. I recently went to a doctor to have my knee looked at (I will explain in a moment) and he told me I was fine to play volleyball. Today I went to physical therapy for my knee. My therapist told me I shouldn't play volleyball. I am choosing to listen to my doctor.
Now for my lovely knee. I remember my knee hurting a little before my leukemia. It hasn't bothered me for the last year. Possibly because I have been bedridden! As I have worked around the house, gone running (very little), gone up and down stairs more, and tried lunges at aerobics I have noticed an intense pain in my knee. It doesn't throb after, it doesn't swell, and it doesn't hurt to touch - but, oh how it hurts when I have any forward-pressure motion (for lack of a better explanation). I got an appointment with Dr. King last week. My x-rays looked good - spacing was fine. My range of motion was okay and I didn't have pain or tenderness when he did his exam. Dr. King feels that the issue is related to muscle atrophy. Makes sense to me. The cure is to strengthen the muscles that support my knee. Physical therapy it is!
My first physical-therapy appointment was today. My physical therapist (PT) is a nice enough guy. Not very personable, but nice. His exam left me feeling like a wimp, a little discouraged, but hopeful and full of insight. He watched me walk and said I favor my right leg. He felt my knee caps as I moved my knee. He checked my flexibility and took some measurements. He checked my strength and I realized how much stronger my right leg is than my left. Weird! In my soccer days I played left wing and kicked with my left foot. My PT had me do some motions on a small stepper - holy ouch! The verdict: my quad muscles are not supporting my knee (atrophy), especially my inner quad muscle, resulting in my knee cap shifting (intense pain). Also, my left hip is very weak. *** Light Bulb On *** Ding, ding, ding! Can you say hematoma; i.e., the abnormal buildup of blood in an organ or other tissue of the body, caused by a break in a blood vessel. Hello!!! Remember those days? Oh how well I do! Massive bleed in my left hip, horrible swelling in my legs and feet, bruised from left hip to left toes, walker, pain, pain, pain, morphine, pain pump, pain, etc. I completely get my current problems: stairs are still a little tough, balance is still off, my right leg supports me better, my left leg gets fatigued and sore faster than my right. I am glad I get it now and for once will be sticking with my physical therapy. ***sigh***
Really, life is good. Not too long ago: I couldn't walk up or down the stairs alternating feet. I couldn't get out of the bathtub by myself and actually fell several times. I had to use the electric cart at the store. Wherever I went I had to wear a mask that covers most of my face. I couldn't wear my contacts. I slept a lot. I ate around 900 calories a day because I couldn't handle anymore. I hated chocolate and anything sweet (I wouldn't mind that one now). I couldn't live at home. I had to go to clinic in SLC at least once, often more, every week. Yup, life is definitely good.
Much love,
Mel
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