Saturday, November 13, 2010
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 . . .
Tuesday, November 2, 2010
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.
Saturday, October 30, 2010
I am not one to run to the doctor's office when I am sick. I try to manage my illnesses on my own, until I know I can't. This time around I lasted about 5 days and decided I needed some help. My cough was so bad that I wasn't getting any sleep and I was gagging/throwing up from coughing so hard. Not to mention all the other things that were going on (see last post). My mom took me to Dr. Clark and he told me I most likely had H1N1. No testing was done and there was a good reason, I just don't remember it. He gave me a pamphlet about how to care for and prevent the spread of H1N1. He also gave me some cough medicine with codeine so I could get some rest. That night, Kaden and I slept at my parents house. I remember the cough medicine helping some. Most of all, I remember waking up in the middle of the night with my sheets, blankets, and pajamas drenched in a cold sweat. I had never had such an experience. I found it odd and disturbing. I determined that having the flu was the pits!
Once my cough and fevers settled down a little (@ 2 day after my doctor appointment), I realized that the whooshing sound in my ears was changing. Not only did I have a little bit of whooshing, I had the Jumanji drum pounding in my ears. You know, the sound the game makes on the movie "Jumanji." Keep in mind, I was still a kindergarten teacher to 46 students.
For me, and most teachers, teaching is a 24/7 job. When you are not at school teaching, your students are on your mind: so are thoughts about how to meet district demands, school demands, students' needs, lessons to prepare, etc. Plus, teachers either stay late to school, go really early to school, or take school home. Personally, I took my job teaching seriously. I love my students (once my student, always my student) and want what is best for them. I also love the families of my students. Some of my best friends and favorite people in the world are families of my students. Last year was no different.
My morning class was particularly challenging in the classroom-management department. As always, each student was unique and added to the dynamics of the class. I had free spirits, disagreeable spirits, bubbly spirits, stubborn spirits, talkative spirits, ready-to-please kids, kids who knew little to kids who knew everything, sensitive kids, they were all loving, some cared about learning more that others did - you know, a regular classroom of kids. The dynamics of this group were simply challenging to manage. I knew that in order for the class to be most successful, structure and routine were extremely essential. We worked really hard at getting our class to run smooth and I felt that we were all making great progress. October was the month to work on earning jack-o-lanterns (paper) each day and many of the kids were motivated by doing so. I do not remember if there were rewards possible or if the number of jack-o-lanterns was the reward. Either way, progress was slow but sure. I also had my afternoon class. They were pretty mild. Again, each student was unique and added to the dynamics of the class; however, aside from lots of gigglers and a few talkers, behavior was not a big concern. Academics and meeting some individual learning needs was my challenge. Everything was feeling good with both groups when I got sick.
My teacher friends will especially understand my anxieties and frustrations at this point last year. Each day I would hope to go into work. Tomorrow was always going to be the day. I did my best to keep a consistent sub (Mrs. Keith), but it's not always possible as good subs generally have prior commitments. I knew my morning class was especially struggling and it was always on my mind. I was so grateful for those who were constants (Marla, Julie, Kim, Kim) in the classroom, especially for my students who had behavior plans, academic plans, and who thrived on structure. Still, it was not the same as being there myself. I knew my classroom was a mess. Book orders had arrived and needed to be sorted (a huge undertaking). I was e-mailing lesson plans from home but had been gone so long (2 weeks) that I didn't know what was going on, what had been accomplished, and how the pacing of district programs were going. My afternoon class was even getting a bit lively. I knew things were a bit chaotic - I heard about it. All of this was not how I worked! Still, each day I planned to go in, but couldn't.
Finally, I was feeling a little better, just very tired. I decided to try going back to work (I think it was Thursday, Oct. 29th). I knew I would have to sleep between my two classes and would have to rely on extra help, but by golly I was going back! My students were so happy to see me and I was so happy to see them. I recall being a little teary and thinking about how much I love teaching and how I had missed my kids. I received some nice welcome-back notes and little treats. It was just nice. Unfortunately, once there 2 hours I knew I couldn't do it. Luckily I had several parents there for Thursday groups. Once my aides came in at 11:00 I had to leave. I went down to the teacher's lounge, sat on the couch, and cried a little. I felt so sick! My head was pounding, I felt dizzy, and I now I had grown a pounding heart in my ear. I knew I had to go home. I called Chris at the office and told her I needed a sub for the afternoon and she helped get everything arranged. I did make it back to the morning class to help get them out the door for home. I then worked on sub plans for the sub coming in the afternoon, and tried like mad to get out before my afternoon students arrived. I didn't want them to be disappointed when I left. Well, I didn't make it out before they arrived. Once again I was greeted by excited students with cards and treats to welcome me back, then I had to tell them I was going home. I felt really sad, but I couldn't stay.
At this point I figured I had a middle-ear infection or a sinus infection. I called my doctor's office yet again and got an appointment for the next day, Friday, Oct. 30. Dr. Clark wasn't in that day so I saw Dr. Mortensen. He determined I probably had a secondary or tertiary infection from the flu. I discussed my extreme fatigue with him. After feeling my thyroid, and having all the other doctors (3 total) check out my thyroid, he also determined that my thyroid was mildly prominent and that we should look into it further when my flu/infection was under control. I left the office with an antibiotic prescription and the knowledge that my thyroid may be causing some issues. I started my antibiotics that afternoon, took a nap, and went to school so Kaden could fill his obligation of volunteering at the Halloween Carnival from 5-7.
I figured it was a good opportunity to work on my room and get the calendar switched over to November. I worked a little, and then I laid down on the yellow-group table to rest, worked a little more, laid down, talked to Curt (principal) about a couple of things, laid down. At one point a student, his sister, and dad peeked in to say hello. Mac seemed surprised to see me laying on the table. It was nice to see him, and a few other people. I didn't accomplish too much. I did get the calendar switched over, I looked through homework, picked up a little, and that was about it. The next day was Halloween.
Halloween was a not too eventful Saturday. I don't remember what went on during the day. That night, Kaden went out with Eric, Eli, Tate, and Taylie. Cami was sick (I think). I watched TV and listened for the door. I did have a few kids come to trick-or-treat. I remember having to sit in the doorway once I opened the door. I didn't have the energy to stand and hold a bowl of candy. I was glad I wasn't visited often. Sunday came and went without much improvement. I was sure that by Monday I would feel a bit better - I didn't. So, I did the next best thing and called my ENT, Dr. Bennion, so I could get a specialist's opinion.
I drove myself to his office at the Specialty Hospital and made my way in. I was in tears by the time I got to his office. I was so exhausted! The nurse took me back to my room and I apologized for crying. I was possibly sobbing at this point and all I could say was I was so tired and that I was sure I grew a heart in my ear. Dr. Bennion checked my ears and there was no sign of infection, just fluid. I always have fluid in my ears so neither one of us were surprised. The audiologist did some test and my pressure was off a little. Dr. Bennion determined that Eustachian tube was having some issues due to some inflammation. Fair enough, it's a common problem for me. He prescribed me a steroid. He also sent me to get some blood work done to check my thyroid. I ran into to my friend and colleague, Jan, as I left Dr. Bennion's office. I could hear the concern in her voice and see the concern on her face - a bit unnerving. I started my steroid that afternoon. I remember picking up my steroid at the pharmacy. My old classmate Tasha Bowen (I forgot her married name) was the one who helped me. I had to put my head on the counter because I was so tired. The next afternoon I got my thyroid results and it was a little bit low. Well, the count they checked was high which meant that my thyroid was low. Now I needed to get synthroid. I was a little perplexed by the fact that I was so exhausted, but my thyroid was just barely off. I followed doctor's orders and took the steroid and synthroid. I did start feeling a little better; at least my Jumanji drum/heart quit pounding in my ear thanks to the steroid.
To be continued . . .
*I apologize to those who know the rules for lie, lay, lying, laying, etc. I don't remember them and am too lazy to look them up. :)
Saturday, October 16, 2010
I was really looking forward to a weekend without a son at home. Our apartment and my classroom needed some major cleaning! Kaden did not enjoy helping out in my classroom, ever. So, what a perfect time to work hard without a whining 12-year-old. While at my lovely math meeting, I received a phone call from Kaden's scout leader telling me that Kaden threw up in the truck. He made it as far as Maverik - just down the road. His leader dropped him off at grandma and grandpa's house. So much for my weekend to get things in order.
After my meeting I collected Kaden and we got settled at home. About 1 hour later I began feeling sick. I hate stomach bugs! The only saving grace is that there is usually only one day of misery. The next day, Saturday, Kaden felt better and so did my dad (he was sick as well); however, I was still not feeling too great. This is when it all began . . .
I never did get better. My sickness just changed. I went from throwing up, to being really tired, fevers, chills, cough, earaches, sinus pain, pounding and swishing in my ears, horrible night sweats, very swollen lymph nodes in my neck and head - you know, H1N1. I was so sick!!!
And the story will continue later . . .
Sunday, September 26, 2010
Monday, September 20, 2010
When the procedure was finished Chris went to put gauze and a big piece of tape over my incision. Not good! I am allergic to tape/adhesive. Chris asked me how I wanted him to keep the incision covered. I determined, with the help of Dan and Chris, that I had to have the gauze and tape. So, Dan found some tape that didn't have a terribly strong adhesive. I had a very itchy, uncomfortable night. I was very sore and sad to miss volleyball. The next day, Friday, my mom and I worked on getting the tape and gauze off. Not an easy process! Some blood from my incision was stuck to the gauze. No wonder I got sharp pains when I moved! This is what we saw when everything was finally removed.
I have tried using a band-aid, gauze and paper tape, and a different brand of band-aid. It doesn't matter what I use. My skin burns and itches. If you look toward the top of the picture, you can see the scar where the catheter from my tri-fusion line was at my neck/collar bone.
This is my shot from today, Monday. The incision is scabbed over. Yeah!!! Now I can see bruising too. I figured it would show up eventually.
My incision is feeling better each day. I can't wait to take a shower without having to worry about covering a big tri-fusion line with Glad Press 'n Seal: That's how you protect "things" when they can't get wet and you're allergic to adhesives.
Thank you Jen (Jenny ;0) for going with me! I'm glad you got to see the procedure. I am glad Kaden got to come with too. Once he found out I was probably going to get my line out, he was determined to go to clinic with me. Hopefully the visit brought him a little bit of closure with everything.
Thursday, September 9, 2010
I had a clinic visit last Friday, September 3. The visit included lab tests, a pentamadine treatment, a visit with the new doctor on the team, and a visit with Dr. Peterson who has been on the team since I was diagnosed. It was a long day! Luckily, there is always somewhere to plant my head to rest and plenty of heated blankets to keep me warm. My lab results look good. My hematocrit is holding steady around 30 - so my tank isn't full yet. My platelets went up. My white cells and neutrophils went down - probably due to allergies or a minor cold I have.
This is the new doctor on the team, Birgitta Mitchell. She had been working with in-patient, so this was my first visit with her. I really like her. She was thorough and easy to talk to. I often make goofy remarks (right Kim!) and she could handle it. My check up by Dr. Mitchell went well. My check ups are generally focused on looking for signs of graft vs. host disease (GVHD). I haven't had to deal with GVHD on a large scale, maybe not even on a small scale. Who knows . . .
Dr. Mitchell did give me and my mom great news. The results regarding the translocated chromosomes 4 and 11 came back negative. The pathologists no longer see the translocation. This is wonderful, fabulous, exciting news!
My pentamadine treatment went as usual. It is a breathing treatment I get once each month. I first do a treatment of albuterol to open up my airways, then I do a treatment of pentamadine. I spend most of the time gagging and dry heaving because the pentamadine is disgusting. I would much rather do the pentamadine once a month than get a horrible fungal pneumonia. Just one of the few preventative medicines I take.
My visit with Dr. Finn Peterson was fine. I was glad to finally get a picture with him. He is a great doctor from Denmark. I love his accent; it reminds me a bit of my Grandma Hill. As I said the meeting with Dr. P was fine, but a let down at the same time. This was the time I was supposed to be told what the next step is going to be. Unfortunately, there are no clear-cut answers. Remember, the options are to do a DLI (donor lymphocyte infusion) or to do nothing. Dr. P had spent the week or so before my visit conversing with doctors from around the world and with the other doctors on the team at LDS. This is the info my mom and I were told during our visit with Dr. P:
There is no data supporting one option (see above) being better than the other. I do have donor cells in a freezer at U of U and, because of this, some doctors think I should have them infused since they are available. The doctors have discussed the fact that infusing the cells can result in severe GVHD, where the donor cells attach my body. GVHD can be manifested in many ways: skin rashes, scleroderma, problems with the liver, heart, eyes, teeth, mouth, lips, etc. It's overwhelming to think of all the possibilities. Oftentimes, GVHD is just as bad, if not worse, than leukemia itself. Infusing the cells can also result in my donor cell increasing resulting in a better engraftment. There is no guarantee of not relapsing if I go this route. Now, the flip side.
Do nothing regarding an infusion of cells and continue to monitor my progress. My counts have been going up. The main counts my doctors look at are my platelets and my neutrophils. My platelets have been on a steady climb up, and I have not had to have platelets infused since May (I think). My neutrophils are not high, but they are not low enough for concern. A lot of things can affect the neutrophil count (allergies!). There is no sign of leukemia in my blood, bone marrow, or spinal fluid. The translocation is gone. I am feeling well. Because of these things, some doctors feel that monitoring my progress is the way to go. They feel that my transplant may have already accomplished its task and that my body may be working on correcting it's errors on it's own. If an infusion is completed, the positive process my body is (?)doing(?) may be destroyed, leaving me worse off.
Dr. P explained that the doctors he has conversed with around the world and on the team are split. That you could literally split them in half with a knife: 1/2 supporting DLI, 1/2 supporting monitoring. The decision is left to me. I have had many thoughts going through my mind that I don't have the energy or brain power to type about at this time. The one thing I know for certain is that there is one Being who knows what I should do, my Heavenly Father.
Sunday, August 29, 2010
Here is our crew of kids: Chase, Austin, Brooke, Kaden, Ethan, Eli, and Tate in the front. The Bee's lost, but we still had fun. The fireworks after the game were nice too.
Friday, August 13, 2010
My labs look good. My platelet count stayed the same, but everything else went up. Yeah! My white cells and neutrophils are both in the low-normal range. My red blood is 6.5 points from low normal. My magnesium is now in the high-normal range. No more Maggie!!! For those of you not familiar with Maggie, it is the name given to the pack I've had to carry around for 1-4 hours each day since leaving the hospital. The pack housed the pump that was hooked to my magnesium/saline bag, that was hooked to my red tri-fusion line, that went into my body to keep my body hydrated and my magnesium count around normal. It will be nice to give Maggie a rest. :)
While at the clinic I did get bad news from my friend Liz. Her transplant didn't work - she has 0 donor cells. Plus, her leukemia is back. She was diagnosed just before I was. I had my transplant in Feb and she didn't have her transplant until June. The hold up was caused by Medicaid. They didn't want to pay for the procedure. Question 1: Would her transplant have been more successful if she had it sooner? Liz could have another transplant but, again, Medicaid doesn't want to pay for it. Liz's words were "what, they just give you a death sentence?" Question 2: Isn't the life of a young woman worth the fight to save? Question 3: Why does insurance have so much say in a person's opportunity to live? Question 4: Considering her insurance is Medicaid, why on earth would I want a government-run healthcare program? I really have no desire to have a healthcare debate on this blog, so please don't start. These are just questions that I have been thinking about. I am simply bothered by the situation.
All that said, please keep Liz and her son in your prayers. They are both having a very difficult time; especially her son. Liz and I have never discussed her beliefs in a higher power, but I know that the power of prayer is real. I know that she and her son can find peace through our Savior. I also know that the prayers of many truly bring blessings of peace and comfort.
Coming up: Just waiting to see what my bone marrow shows. It takes 10-14 days to get results back.
Friday, July 30, 2010
I had what is supposed to be my last lumber puncture on July 28. Since it was my last LP, we decided we needed to get some pictures of the process. The doctor would not let my mom come in, but agreed that one of the techs, Kent, could be our photographer. I always had my face in a pillow and happy drugs running through my veins (for most LPs); so, the pics allow me to see the process from a different angle. An angle that makes me understand some things a bit better.
Still putting in the Mt. Dew. The doc would inject it slowly to help maintain balance in my spine.
After each outpatient LP, mom and I would head to Greg and Charise's house. I would sleep for a good 2-3 hours. When Charise got home from work she would make a wonderful meal and someone took a picture if a camera was around. We would eat and then laugh at Greg's antics. I am very appreciative of the number of times we have been welcomed into Greg and Charise's home. I am blessed with a wonderful family!
THINGS TO COME: Bone marrow biopsy next Thursday. Chimerism tests. Pentostatin. DLI.
Thursday, July 22, 2010
*My hematocrit (Hct) was 26.1, up from 26. My body is still low on blood: A normal Hct is 36.0-46.0.
I have a bunch of other labs done, but I don't really know what they are or what they mean. My mom relies on my sister-in-law Charise to explain the other counts. I don't remember what I've been told about them. :)
All in all, I look pretty good on paper (that's what my docs say). However, my engraftment of donor cells has been lost a bit (that's what my coordinator says). Hence the tacro taper (explained in last post) that my mom and I messed up. So, we're behind schedule by about 4 days. The hope is that going off my immunosuppressant will kick the donor cells into action. I will get to have another bone-marrow biopsy and peripheral chimerism test two weeks after I finish my tacro. Those labs take 10-14 days to come back, at which point my team of docs, plus a few others, will decide if I need a donor-lymphocyte infusion (DLI). If I need a DLI, I will have one dose of some drug, a day of rest, and then the infusion. So, there is everything I know for now. Remember, everything is subject to change.
My dear Kaden. He is 13, what more do I need to say.
We had a great party with my dad's side of the family. We went to aunt Lenie and uncle Kohn's house. (Arlene, is that how you spell Lenie? I just don't remember.) We get together once or twice a year and have a fabulous time! My grandma Hill is so loving to all. She's my Norwegian grandma who has the biggest heart, the most wonderful smile, heartiest laugh, and best attitude. I absolutely adore her! Another extended family who I love, with only a few missing!
FYI Family: I stole this pic from uncle Ron's Facebook page. I know that he loves me so I am thinking it's okay.
One of the most exciting recent events was the return of Kaden's uncle Andrew from Afghanistan. Kaden has missed seeing him at his games and having him around as a camping buddy. We were fortunate enough to see him fly himself in to the Logan Airport. Kaden was very, very excited!Kaden got ready for the day without any hassle from me. I love his hair and wish someone could convince him that he is so handsome without that darn hat of his. I like him with his at too, but just look at that curly hair! (sorry, I digress)
Andrew just landed and parked the plane. His family had a beautiful "welcome home" poster for him and lots of hugs and loves. It was nice to see him, his wife Elisha, and son Johnathan reunite.
Kaden can rest easy knowing that Andrew is on American soil. Hopefully Andrew won't have to go back on tour too soon. We are all so grateful for his service in the army! He is a wonderful example to Kaden and is completely loved by Kaden. I am so glad he is a part of Kaden's life! What a great example of love and support in a difficult situation!
Cami will post about the fabulous Hyde Park parade later. She has all the pics.
Much love - Melanie
Saturday, July 10, 2010
I go to LDS hospital for a clinic visit at least once each week. A clinic visit is when I get my labs drawn; I talk with a PA and report any concerns or new problems, review my meds list, and get a quick check over; last, I talk to one of my doctors (I have 4 of them and was informed that a 5th just joined the team) about my current condition and any concerns brought up at tumor board.
The last two weeks have been filled with lots of sick time: nausea and everything that comes with it. I spent three consecutive days throwing up everything I tried to eat resulting in not being able to take my meds. The vomiting stopped and changed to dry heaves. I could at least keep my meds down. I've also had diarrhea (lovely, I know). Needless to say I have been very dehydrated and exhausted over the last 2 weeks. Dr. Peterson told me I would most likely need to be admitted so they could figure out what was going on (all labs were negative for obvious concerns). I went to my clinic visit yesterday (Fri. 9) fully expecting to be admitted, and am pleased to note that I was not. I have been running IV fluids and magnesium for the last couple of days. I believe doing so has helped my body heal a bit and have more energy. I'm still not 100%, but my guts are finally going in that direction. I think I am on an upward swing in this area.
Dr. Peterson informed me of my chimerism sorts on Tuesday (July 6). They were not the best. My bone marrow (results from biopsy) had 79% recipient cells (my cells) and 21% donor cells . The best scenario would be for my marrow to show 100% donor cells. My peripheral blood (the blood cruising around in my body) showed 64% donor cells and 36% recipient cells. Dr. Peterson said they would be discussing my case at tumor board on Wednesday; i.e., tumor board is when all the doctors and coordinators get together and discuss what needs to happen with each individual patient.
Yesterday (July 9) I talked with Dr. Asche to get a better understanding of what is going on and to find out what was decided at tumor board. Apparently, it is okay for the 2 chimerism test to show different totals; i.e., my bone marrow is mostly my cells and my peripheral is mostly donor cells. Dr. Asche said the main number they look at is the peripheral sort and that it is best for it to be 100% donor cells. The current concern is that I will have relapse leukemia because I have so many of my own cells cruising around inside. As of now I am cancer free! We just don't want it to come back so some treatments continue. It was decided at tumor board that I would do a quick tacro taper. Tacro is an immunosuppresent drug that helps keep graft-vs-host disease at bay. I will do a 2-week taper off of the drug. After the taper, they will start me on a new drug to prepare my body to receive more donor cells. I don't remember the name of the drug, but it is supposed to be MUCH milder than radiation and ATG (a.k.a. rabbit blood). I don't know how much of the new drug I will have to get. After I get the new drug (I don't know how much) they will transplant more donor cells through my central line. The focus is on getting the donor's T-lymphocytes into my body. None of this can take place until my counts go up. It appears that the virus or whatever I've had has caused my counts to drop. The only lab I remember is my hematocrit. It is now 24.5 with normal being @40. My platelets were okay. My neutrophils dropped. I don't remember my white cell count. If my counts don't recover, they will do another bone-marrow biopsy to determine what is going on. For now, I go in for a lumbar puncture with methotrexate next Tuesday (July 13). Labs will be drawn and hopefully some final decisions will be made.
I have been home from Salt Lake since @ April 30. I must say that it has been fabulous! Sure, I do go to SLC a lot and sometimes spend a few days with Greg and Charise, but for the most part I am home. I've added some pictures of some of our activities this summer.
I don't have any pictures of my grandpa and now grandma Kathy's wedding. They were married on July 8. What a beautiful day and ceremony. Grandpa had been sick so I said hi and blew kisses from a distance. He and Kathy both understood. It was just great to see my family whom I have not seen for so long. I love my extended family!
Oh my dear daddy. We had some good laughs together one Sunday while my mom was at church. The conversation went something like this:
Me: "Dad, there isn't any dishwasher soap and I don't think you should put that soap in the dishwasher."
Dad: "This is what I put in when you guys were gone. Mom told me to put the liquid soap in."
Me: "The liquid soap was probably liquid dishwasher soap. I really don't think you should put that soap in."
Dad: "I'm pretty sure it was this (as he holds up the Dawn regular dish soap)."
Me: "Okay, but I still don't think you should put that in the dishwasher. It might ruin it too."
Dad: Pours the soap into the holes and turns on the dishwasher.
Soon after I heard my dad in the kitchen. I don't remember what he said. I remember him chuckling a bit and calling for me. I walked in to find bubbles all over the outside of the dishwasher and on the floor (unfortunately I didn't have my camera at this time).
Me: "You should really start listening to me dad."
Dad: Continues laughing and begins clean up. "Don't tell your mother about this at church. You let me tell her on our way home."
Me: "I want to announce it in Relief Society." After some strong looks and words from my dad I promised him I would not say a word. He got to do the telling on the way home.
Each year my family has a 4th of July barbecue. We have it whenever we can get most of our family here. This year we had our family celebration on July 3.
Dad makes the best burgers! I bought some slider buns this year (small buns) and had a slider burger. It was delicious, but I have a hard time getting my mouth around the top and bottom bun to take a bite. It was simply nice to eat something!
I have always considered Kaden to be a natural athlete. He has lots to learn about playing various sports, but he is quick to learn and works hard. One of the best parts of the summer has been going to Kaden's baseball games. He has been blessed with a great coach and great teammates since he began minor's league. He has had either Grandpa Balls, Uncle Mike, or John Lee for his coach. John Lee has coached him the most and Kaden really respects him and looks up to him. This year was the first year for Pony League. The field-size changed and so did some rules. There was a bit to learn. Kaden played his best at each game; his brain fell out only 2 times that I can recall - there's just something about 3rd base. Kaden usually plays 1st or pitch when in the field. He is working on speeding up his pitching delivery, and I look forward to seeing him pitch next year. He is an awesome 1st baseman who doesn't let too many balls pass him by.