Friday, July 30, 2010

The End of the Lumbar Puncture

Warning: Pictures of medical stuff, including needles and catheters are included. Angie and Stephen, good luck!

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.

Before I got an LP, I would have to get at least one liter of fluid infused. My first few lumbar punctures were horrible experiences because of the lack of fluid in my spine, amongst other "issues." The liter of fluid resulted in my spinal fluid being juicy enough that a sample could be drawn.

This is one of the techs, Chris. I always saw him with his gear on: hat, mask, gloves, etc. I was really surprised to see him in the hall one day. He has long hair! I never knew.

This spot in the hall was "my spot" each time I had a LP. One of the hospital transporters would get me from where I was before LP and bring me to this spot. I was not amused the first time this happened. It was my first day at the hospital, I was having numerous tests and such done. Some dude I didn't know brought me to this spot and left me. That's protocol, but I didn't know it then and, yes, I cried. I did learn that it was my spot until angio was ready for me. Once the pharmacist, Brenda (pictured here) or Bruce, passed me with the bag of methotrexate, I knew I would go in soon.

Here is the doc and nurse, Shawnna, doing some prep. The doc (or Chris) would cover my back with very cold iodine and would cover the areas surrounding the puncture point with something. I think tape is involved, but we will have to see further down. I don't know this doctor's name. Overall, I had 3 or 4 doctors who did my LPs. One girl and 3 boys. Can't tell you one name. :) Shawnna was giving me some happy drugs.

Still prepping. You can see the x-ray of my back on the computer screen (the previous pic shows it too). The x-ray helped the doctor become familiar with the anatomy of my back - extra lower vertebrae and all.

Doctor man (again, I don't know his name) is putting the needle in my back.

If you enlarge the picture, you can see the needle in my back. Look, there is that stuff they put around the puncture point.

No wonder I feel pain! That lovey tube is simply dangling out of my back. I didn't know this happened with each LP.

Doctor man is taking spinal fluid out of my back. This served 2 purposes: 1) It's like a biopsy of my spinal fluid. The fluid is checked for leukemic cells. 2) Fluid had to be removed from my spine so that fluid (chemo) could be added to my spine.

My spinal fluid ready to go to the lab.

Shawnna is holding the bag of methotrexate that was to go in my back. We call it Mt. Dew because it looks just like Mt. Dew.

Doctor man in putting the Mt. Dew into my spine. It always felt like a lot of pressure.

Still putting in the Mt. Dew. The doc would inject it slowly to help maintain balance in my spine.
Finished!!! I look so happy. I suppose the meds worked really well. I have absolutely no recollection of Kent taking this picture.

My goodness! I always love the pics my mom takes - I look, interesting. This fine man is Dan. He was usually my nurse for LPs. He was doing other things this day, but he made sure to come in to recovery for a pic. He calmed my nerves many times and was a great med pusher.
I believe I had a total of 13 lumbar punctures. I will update that number if my mom tells me different. All I know is that a) lumbar punctures are really yucky, b) I don't like people to mess with my back, c) I love the nurses and techs who were always there, and d) I won't have to have one again.

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.
Much love,

Thursday, July 22, 2010

Leukemia Joys :)

Leukemia is one of those illnesses that is so unpredictable. Leukemics have to take a day at a time and can't do a lot of predicting of the future. Prognosis, procedures, treatment plans, and everything else that comes with the territory can change at the drop of a hat; so, whenever anyone asks about any of those things I am left wanting for words. All I know is what the plan is for now, and every plan is subject to change.
I did have my lumbar puncture on July 13. Everything went fine and leukemia is still absent from my spinal fluid. My back has been pretty tender since then, but who knows why. Most of you know my back (SI joint, hips, sacrum) has been messed up for some time. Could be all of that resurfacing. I am glad Dr. Garvert (my chiropractor) is still around. I knew that he has been missing me! One visit down and many more to come.
I have had 2 clinic visits since the 13th - the last visit was yesterday, July 21. My counts are still just hanging out. Once I figure out how to edit the sidebar on this blog I will post the norms for each lab test we watch; for now, I will just put it in the post.

*My hematocrit (Hct) was 26.1, up from 26. My body is still low on blood: A normal Hct is 36.0-46.0.
*My platelets (PLTS) were 97, up from 91. A step in the right direction, but short of the normal PLTS of 150-400.
*My white-blood-cell (WBC) count was 2.7, up from 2.4. Another step in the right direction, but short of the normal WBC of 3.6-10.6. I am almost normal!
* My absolute neutrophil (Neut, Abs) count was 1.4, down from 1.8. My doctors always tell me to not worry about the count going down a bit. The normal count is 1.8-6.8.

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.
I did make it to a movie with mom, Kim, and Kaden. We went to the big iMax theater in Salt Lake and saw Toy Story 3D. I took my big frog blanket to cover the seat and arm rests and went at a time when the theater was essentially empty. It worked out very well. It was also so nice to have Kim with us again. What a fabulous big sister!
I about died when I saw this picture. Wouldn't you be scared if you saw me coming toward you? It really just cracks me up. No wonder I got some strange looks from some kids (and probably adults too).
I told you about my grandpa's wedding a couple of weeks ago. I did get some pics that Cami took.

Here is the happy couple.

I am actually in this picture. Look at that bald looking, masked person in the back. Not Eric - he is bald. Look way back.

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

Warning - It's a long one! Very, very long!

Hello my wonderful family and friends. I decided I really need to do an update on my own. Everything is chronologically backwards. Enjoy!

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!

Lindsey is who we call our "little white tornado." She has no fear and does not stop doing. She thought the fence was pretty cool.

Tate and Taylie are best buds. They do tend to get into trouble every now and then, but play very well together over all.

Kaden lounging around with his lovely iPod. I must admit that I want to throw it in the canal once in awhile.

Greg and Charise. Who knows what Greg is doing. He is a man of many abilities.

I love this picture of my dad, LeRoy. He is one of my solid rocks. I love him much.

I wasn't concerned about the container with the orange smoke bomb until Kaden sealed the lid on tight. We all ran to the other side of the lawn. Nothing happened so Kaden finally went and kicked it down the little hill. All was well!

Kaden has discovered fireworks and got himself banned from youTube this year (mother's ban). He was the one in charge of lighting the fireworks. His cousins enjoyed his firework shows for several days.

Grandpa getting after Tate and Taylie. I don't remember what they did, but my brother-in-law, Eric, and I got a pretty good laugh.
This year's valley fireworks were held on Friday, July 2. The date for fireworks seems to be determined by the date of the Cruise-In. We had our festivities at the vet clinic in North Logan. My sister-in-law, Stephanie, worked there for many years and her sister KrissAnn works there now. We have a barbecue and too many treats. Great times!!! I actually ate a hot dog this year. Again, I was just glad to eat food. The best thing was that it was a Nathan's all-beef dog. So good!
Greg's Niel Diamond pose during Coming to America. When he was little he would get on the kitchen counter, use a multi-color pen for his microphone, and sing Coming to America. We loved his pose.

Me and Charise

A small part of our clan.

Taylie and Mike loading up at the trunk spread.

Stephanie and Lindsey

Greg and Lindsey

Kaden and Lindsey - Greg used to take Kaden around on his shoulders when Kaden was little. Kaden would hold onto Greg's ears and have a great time.

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.

This picture cracks me up! It so looks like he is grabbing the 1st baseman's behind. The first baseman has his batting gloves in his back pocket. Kaden's hands w/batting gloves are in front of him - he's ready to run. No butt pinching going on!

Ready to run.

Checking the runner on first before he makes his pitch.

Delivery! He had some good pitches and some bad. That's how it goes.

Taking the pitcher's mound.

Game complete.

Kaden with some of his teammates: Sterling, Trevor, Raleigh, Austin, Kaden, Bryson, Nathan, and Daniel trying to get out of the shot (you bum).

After final game. Didn't take first in their league, but did take second.

Back row: Coach Hillyard. Derek Drake, Wyatt Christensen, Daniel Lee, Bryson Hillyard, Nathan Lusk, Kade Sorensen, Daniel Osbourne, Coach Lee, Coach Holden
Front row: Kaden Balls, Brock ?, Raleigh Robinson, Austin Jeppson, Trevor Holden, Sterling ?
Missing: Robert Erkenbrach (I have no clue how to spell that last name)

Thanks to my cousin's father-in-law, we had the opportunity to go to the ReAL vs. San Jose Earthquakes game on June 28. We got to enjoy a suite with some great family and new friends.
Mike and Stephanie came with me and Kaden. It was their first game.

We could see right down into the team tunnel. Awesome!

We got to see the MLS cup won by ReAL last season. Awesome!

Kaden, Dave Checketts, and me.
Dave Checketts is one of the owner's of ReAL. We got to enjoy the game from his personal suite. --Now, please do not start sending requests to Dave seeking tickets. He is a very kind person, but his suite is filled with friends and family.-- This fun event was arranged for me and Kaden by a common acquantance. One of Dave's old friends. Thank you, thank you, thank you! We loved every minute of our time and it was wonderful to spend some time with Kaden without feeling like I had to worry about protecting myself from everyone arround me.
Our next fun time is next weekend. We have our great Hyde Park celebration on the 16th and 17th. Most of the family will be on a thank you float throwing candy to good ole' Hyde Parkers. Who new the thought of throwing candy could be so exciting!