My good friend Jay battled cancer in his life and has been an excellent friend to talk to though the whole process. I realized we had the same haircut. Who's looks better?
Thursday, August 18, 2011
Good friends AREN'T hard to find
My good friend Jay battled cancer in his life and has been an excellent friend to talk to though the whole process. I realized we had the same haircut. 
Wednesday, August 17, 2011
Caution: Detours Ahead
Another CT scan on Monday shows another nodule in my lungs (still small but another), suspecting its fungal. After lots of blood was taken to see what infection it could be we infused me with an antifungal for 2 hours to start fighting off infection. Had an EKG and so far the news is that my heart is strong and healthy. All my numbers look great and all major organs are doing well.
Then last night at 10:30pm we got a call from the BMT clinic. Seems that all 3 of my port lines have some sort of infection. They aren’t sure if it is fugal or some kind of bacteria. Either way we headed up to the clinic for another infusion of a different antibiotic just to get started. (Thanks to Patti our neighbor for sitting with the kids at last minute notice!!)
This morning we got the call that I’ll be starting an in home infusion of antibiotics every 12 hours for all three ports. If the infection does not clear up we’ll remove the port and/or put in a fresh one. This means I’ll be doing 6 hours of infusions (including my daily magnesium) everyday until we figure out what infection it is. I still feel healthy and glad I’m not sick or have to be admitted back into the hospital. I’d rather lie in my own bed and infuse that sit in the hospital bed and do it there.
Two steps forward and one step back is how I feel today. I am cancer free and happy about that…however dealing with the lingering effects of all the cancer fighting drugs gets a lot frustrating. This is curable and easily fixed! I just need to do it.
Then last night at 10:30pm we got a call from the BMT clinic. Seems that all 3 of my port lines have some sort of infection. They aren’t sure if it is fugal or some kind of bacteria. Either way we headed up to the clinic for another infusion of a different antibiotic just to get started. (Thanks to Patti our neighbor for sitting with the kids at last minute notice!!)
This morning we got the call that I’ll be starting an in home infusion of antibiotics every 12 hours for all three ports. If the infection does not clear up we’ll remove the port and/or put in a fresh one. This means I’ll be doing 6 hours of infusions (including my daily magnesium) everyday until we figure out what infection it is. I still feel healthy and glad I’m not sick or have to be admitted back into the hospital. I’d rather lie in my own bed and infuse that sit in the hospital bed and do it there.
Two steps forward and one step back is how I feel today. I am cancer free and happy about that…however dealing with the lingering effects of all the cancer fighting drugs gets a lot frustrating. This is curable and easily fixed! I just need to do it.
Tuesday, August 9, 2011
100 Day (July 29, 2011) Post Bone Marrow Transplant Test results!
There has been much anxiety over the past few weeks as Carla has been undergoing tests to evaluate her post bone marrow transplant procedure. These results are compared to pre-transplant tests.
Here is the news: Our doctors say her leukemia is in REMISSION. This is really great news! They do not detect any new tumors related to leukemia, but… “always a but”.
Following her CT and PET Scan tests last week, the hospital called the same evening to tell us there was a blood clot in her right lung, and some small nodules detected. Obviously, this news concerned us, and we learned that I had to give her a shot twice daily in her stomach area starting that night. I guess it paid off watching the nurses give her this shot many times over the course of her hospital stays. Although blood clots in the lungs (Pulmonary Embolism – PE for short…go figure) can be life threatening, Carla did not show any symptoms of the PE which is good. This is being treated with anti-coagulants over the next 6 months, and hopefully the shots can stop within the next 7 days.
The nodules seen on the CT did not “light up” on the PET scan so the doctors were not concerned, but would look at them in a few weeks when the PE is checked with a CT.
Other info: Carla now has all donor blood, A+. No longer O-. Bone marrow biopsy test results were good. She will continue to be on immune suppression medication for at least 9 months, but has started the tapering.
There was so much information discussed today and we wanted to relay as much of the important stuff to all of you. We’ve been so fortunate to have the people in our lives to help our family through these challenges.
I added my name to the Marrow Donor list and submitted my DNA to the “Be the Match” program (http://www.marrow.org) so that maybe I can give the gift of life to someone in need. Its so easy, please consider doing the same.
Here is the news: Our doctors say her leukemia is in REMISSION. This is really great news! They do not detect any new tumors related to leukemia, but… “always a but”.
Following her CT and PET Scan tests last week, the hospital called the same evening to tell us there was a blood clot in her right lung, and some small nodules detected. Obviously, this news concerned us, and we learned that I had to give her a shot twice daily in her stomach area starting that night. I guess it paid off watching the nurses give her this shot many times over the course of her hospital stays. Although blood clots in the lungs (Pulmonary Embolism – PE for short…go figure) can be life threatening, Carla did not show any symptoms of the PE which is good. This is being treated with anti-coagulants over the next 6 months, and hopefully the shots can stop within the next 7 days.
The nodules seen on the CT did not “light up” on the PET scan so the doctors were not concerned, but would look at them in a few weeks when the PE is checked with a CT.
Other info: Carla now has all donor blood, A+. No longer O-. Bone marrow biopsy test results were good. She will continue to be on immune suppression medication for at least 9 months, but has started the tapering.
There was so much information discussed today and we wanted to relay as much of the important stuff to all of you. We’ve been so fortunate to have the people in our lives to help our family through these challenges.
I added my name to the Marrow Donor list and submitted my DNA to the “Be the Match” program (http://www.marrow.org) so that maybe I can give the gift of life to someone in need. Its so easy, please consider doing the same.
Tuesday, August 2, 2011
Learning as I go.
Half my tests are over….nothing too bad until the bone marrow biopsy had to be done again. (A medium size needle is used to numb all layers of the skin in the lower hip…then blood is removed from the bone) OUCH!!!! This was my third one so I knew what to expect…..pain. One of the doctors recommended conscience sedation to relax me so I thought I’d give it a try.
Here is what I learned: I am never doing conscience sedation for my biopsy again. I was still awake, could feel everything and all it did was make me sleepy and nauseated. Guess I learned my lesson. :{
Had my eyes checked and got a 100% perfect rating (in fact the doctor said of all the BMT patients he has seen I was one of his top 3. yeah!!) Did my pulmonary tests and even though my numbers were lower than before the transplant I got a A+ . I’ve completed a chest x-ray and gave more blood. Thursday I will do the full body PET scan. It is very easy to do but just takes hours to complete. (This will determine if the tumors are gone or not.)
Today I meet with the stomach specialist to report how much better I am at eating. What a difference it makes to be able to make a meal, eat it and enjoy it. I still have to continue with the weekly port cleanings and seeing the doctors to go over CBC issues and check my overall health.
Thanks again for the cards, calls and yummy food that has been delivered. We've got the best family, neighbors and friends that anyone could ask for.
Here is what I learned: I am never doing conscience sedation for my biopsy again. I was still awake, could feel everything and all it did was make me sleepy and nauseated. Guess I learned my lesson. :{
Had my eyes checked and got a 100% perfect rating (in fact the doctor said of all the BMT patients he has seen I was one of his top 3. yeah!!) Did my pulmonary tests and even though my numbers were lower than before the transplant I got a A+ . I’ve completed a chest x-ray and gave more blood. Thursday I will do the full body PET scan. It is very easy to do but just takes hours to complete. (This will determine if the tumors are gone or not.)
Today I meet with the stomach specialist to report how much better I am at eating. What a difference it makes to be able to make a meal, eat it and enjoy it. I still have to continue with the weekly port cleanings and seeing the doctors to go over CBC issues and check my overall health.
Thanks again for the cards, calls and yummy food that has been delivered. We've got the best family, neighbors and friends that anyone could ask for.
Tuesday, July 26, 2011
Random stuff....
Random photos that I wanted to share:
Baby Ryan Kelly born July 16th. Most of you know how much I love new babies. He is precious and I hope to watch him grow up.
At this years RMI Reunion a new addition: Victoria Shaw
(3 weeks old) I was in heaven with her.
The best husband in the world.
He has made this experience bearable and I love him soooooo much.
One of my best friends Allison from Seattle stopped by to see me. She is such a good friend and I am so lucky to have her in my life.
________________________________________________
I hit my 100 day mark from the transplant this Friday...yeah! :) I will be starting all the "retests" next week. They are the same tests I took before the transplant so the doctors can compare from before and now. We meet with the doctors on the 16th to discuss the test results. Everyone send out good vibes and get me a good outcome.
I am still feeling well and strong. I am trying to do more but some days I do get more tired than others. I can't wait to have my energy back and stop shaking (a side effect from some drugs which is so frustrating). Feel free to contact me or come see me (no colds, coughs or sickness).
Baby Ryan Kelly born July 16th. Most of you know how much I love new babies. He is precious and I hope to watch him grow up.
At this years RMI Reunion a new addition: Victoria Shaw(3 weeks old) I was in heaven with her.
The best husband in the world.He has made this experience bearable and I love him soooooo much.
One of my best friends Allison from Seattle stopped by to see me. She is such a good friend and I am so lucky to have her in my life.________________________________________________
I hit my 100 day mark from the transplant this Friday...yeah! :) I will be starting all the "retests" next week. They are the same tests I took before the transplant so the doctors can compare from before and now. We meet with the doctors on the 16th to discuss the test results. Everyone send out good vibes and get me a good outcome.
I am still feeling well and strong. I am trying to do more but some days I do get more tired than others. I can't wait to have my energy back and stop shaking (a side effect from some drugs which is so frustrating). Feel free to contact me or come see me (no colds, coughs or sickness).
Friday, July 15, 2011
The "UP" House
Took the girls to the "UP" house that was build in Herriman. It looks so real that it is amazing. You can not get inside, but the house will be open during the Parade of Homes. On the weekends they will have balloons tied to the top. (might have to go back out and see that).
Saturday, July 2, 2011
Where do I start....Carla, Kids, boating?
Ok, let's start with Carla. Recovery from the bone marrow transplant is a work in progress. Carla is doing well, except for one issue. She is unable to eat a normal size meal, gets a full feeling after a few bites. This has been going on for quite some time, so finally an endoscopy was schedule, and occurred yesterday. The doctor peeked into her stomach and could see some inflammation in her stomach and took some biopsies to see what is causing this. We should know the results next week and get this issue resolved and onto some normal meals and improved energy.
Please feel welcome to check in on her by calling, emailing, posting, mailing. I wish I could call each person and answer any and all questions about Carla and us.
Callie is doing so well in her new gymnastics level. So excited about learning a routine instead of just doing drills. She has spent some time with friends and swimming at grandma and grandpa. McCall had a week a soccer conditioning and will be at a soccer camp next week for Skyline. Then a few weeks of hardcore conditioning for high school tryouts. She has such good friends. I took the girls to the drive 2 weeks ago to see The Green Lantern and Thor. Well, they saw the first movie and slept thru the double feature. I took one of our boat tubes and they used as a couch to watch movie.
Boating....we are getting a late jump on that. Carla will not be able to get out this summer for a few reasons. Last weekend was our first attempt to get out boating and tubing. Heavy on the word "attempt". Me, McCall, Callie, Leslie and Debbie (Leslie's mom) took the boat out. We left wakeless and cruised across the lake to find a place to inflate the tube. We stopped and the motor died! The darn thing overheated. Apparently, the impeller shattered. Impellers pull water up and into the engine to cool it. Well, we had to call the marina for a tow and to help load the boat on the trailer and we were done. Since then, its been fixed and ready to try again soon. Dissappointment, but everyone was safe and it was uneventful.
Special thanks to people who have brought us meals and spent some time visiting, Carrie and Rick, Patti and Ruth, Jeff and Kami, Janet and Emma. At work, thank you to the many who ask how Carla is doing and offer all their love and support. We both worked at the same company, so we have many common friends.
Ok, let's start with Carla. Recovery from the bone marrow transplant is a work in progress. Carla is doing well, except for one issue. She is unable to eat a normal size meal, gets a full feeling after a few bites. This has been going on for quite some time, so finally an endoscopy was schedule, and occurred yesterday. The doctor peeked into her stomach and could see some inflammation in her stomach and took some biopsies to see what is causing this. We should know the results next week and get this issue resolved and onto some normal meals and improved energy.
Please feel welcome to check in on her by calling, emailing, posting, mailing. I wish I could call each person and answer any and all questions about Carla and us.
Callie is doing so well in her new gymnastics level. So excited about learning a routine instead of just doing drills. She has spent some time with friends and swimming at grandma and grandpa. McCall had a week a soccer conditioning and will be at a soccer camp next week for Skyline. Then a few weeks of hardcore conditioning for high school tryouts. She has such good friends. I took the girls to the drive 2 weeks ago to see The Green Lantern and Thor. Well, they saw the first movie and slept thru the double feature. I took one of our boat tubes and they used as a couch to watch movie.
Boating....we are getting a late jump on that. Carla will not be able to get out this summer for a few reasons. Last weekend was our first attempt to get out boating and tubing. Heavy on the word "attempt". Me, McCall, Callie, Leslie and Debbie (Leslie's mom) took the boat out. We left wakeless and cruised across the lake to find a place to inflate the tube. We stopped and the motor died! The darn thing overheated. Apparently, the impeller shattered. Impellers pull water up and into the engine to cool it. Well, we had to call the marina for a tow and to help load the boat on the trailer and we were done. Since then, its been fixed and ready to try again soon. Dissappointment, but everyone was safe and it was uneventful.
Special thanks to people who have brought us meals and spent some time visiting, Carrie and Rick, Patti and Ruth, Jeff and Kami, Janet and Emma. At work, thank you to the many who ask how Carla is doing and offer all their love and support. We both worked at the same company, so we have many common friends.
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