Day 31

My numbers are doing awesome and as of last week the doctors think I only need to come in every Friday (which is so nice).  Neweys are at 2700 and white count is at 4.7.

Yesterday’s visit was good.  I currently have GVH (a rash on my chest and a little on my face.)  I noticed it a few days ago and started itching.  Dr. Miller gave me a cream for my chest and we are watching to see if the rash spreads. (yuck)  Not only does the rash itch it feels like a little sunburn and feels hot.  Not enjoying this part of the healing process but knew it was coming.

Took blood yesterday for my T-cell count and a Cimerism count (meaning how much of the donor cells are there vs. mine).  Takes about 7-10 days to get the info.  It should let us know if the donor stem cells are working.  Hope they are kicking the leukemia’s ass!!  Going back in on Tuesday to check the rash and if need be we’ll do a biopsy on it (ouch)…..otherwise I just deal with it and go with the flow.

Girls are doing great. McCall went to Boulder for 6 days for a soccer tournament.  Their team won the tournament and had so much fun.  Thanks to the Gordon’s for taking her.  She had a great time. Callie continues to pursue gymnastics and gets better every week.

Day 12

Fast clinic visit today (usually doesn't work like that. ha!)  Still have to go up Mon-Wed-Fri.
Here are my numbers as of Day 12:

Platlets: 94 (up by themselves from 42)
Red Blood: 28.3 (had to get blood last week)
White Count: .9 ( up by themselves from .4)
Tacro: 13.6 (my range is 10-16)
Neweys: 400 (up from 300 last week)
 **I am still neutropenic and have to get past 500+ on my neweys before I can get rid of some pills.

I know these numbers don't make much sense to most of you, but it is all good.  It shows that the cells are working and I am getting better. Doesn't mean leukemia is gone but that things are going in a positive direction. I haven't had symptoms yet of any GVH and according to Dr. Peterson it may not happen. It all depends on the antigens of the donor cells and how well they fight the cancer. A little GVH would be a real good sign that things are working harder but it doesn't mean bad news.  That made me feel a little better because I was so nervous.  I really like Dr. Peterson.  He puts me at ease and explains things to me better than the other doctors do.

Thank you to Jeff's co-workers the the abundance of food they brought over last week. Both of our fridge/freezers/cabinets are FULL of food, snacks and more.  Thanks to the Kamarath's and Hansen's for dinner Thursday night.  Our bellies are always full...and we are grateful to you.  Thanks to my mom for helping out so much with the kids.  She been taking me to clinic or watching the girls when we are stuck at clinic.  She cleaned my tubs last week and is keeping tabs on my garden pulling weeds and digging where I can't. THANKS MOM!!

STEM CELLS ARE IN!!!!

It’s been a long week and I haven’t had a lot of time to post.  Sorry!  I know a lot of you have questions as to how the stem cell transplant went. 

Sunday-Tuesday I got my 3 treatments of Flubaradine chemo treatment. They were small units and only took 40-45 minutes to infuse.  I didn’t have any real side effects except for a “yucky” tummy and some tiredness.  Wednesday was a longer day with one treatment of TBI (Total Body Irradiation).  I started radiation really well and felt good about it.  The radiologist hangs you in a contraption that allows you to sit as well as stand if you need it.  I did my back side fine (10 minutes each side) and as I was radiating my front I felt a little dizzy.  Next thing I know I am on a gurney with Jeff, the doctor and the 4 radiologists looking over me.  Guess I had passed out with only 5 minutes left.   I thought I was done and didn’t realize what had happened.  I was embarrassed and laughed it off.  Jeff was scared to death and held my hand until I was ready to finish.  I climbed back up and finished the treatment.

Red Cross showed up about an hour later with my donor stem cells.  Lots of signing papers, verifying everything was where it needed to be and I was ready.  To my surprise the donor had sent me a card and wonderful letter wishing success.  My donor is a 21 year old female who works in the medical field, is an EMT and is working on her Neurology degree.  (All personal information in kept private until after one year of transplant).  I will write her back and let her know how appreciative I am of her sacrifice.

The whole process made me very tired for 2 days but I am feeling much better today!  We now wait and see if the cells take. (Usually by day 14-21 we should know.)  The doctors are hoping I get some kind of GVHD (Graft vs. Host Disease) which will show the cells are working. However for me, this could mean some side effects such as skin rashes, intestinal issues and more. Fun huh? I am currently taking about 24+ pills a day and that itself is a process.  I will continue to fight and try to beat this disease. 

My favorite "blood taker" Jessica

 Our favorite nurse Tony. He's become a great friend.

He got married on my birthday 11-11-11.

 Carrie has been so supportive to us.

 One of the many PA's in the clinic. Shar is great!

 My radiologist Dr. Thompson. 

(You might have seen him on some IMC commercials)

 My rock!!  Jeff has been a trooper through this whole thing.  

Wearing his ROCKY shirt for support.

 Card and letter from my donor! 

 Donor stem cells!  Kick some ass and make me well!!!!

 "My little crush" David another PA at clinic.  He makes me giddy and flirtatious.  

He is leaving for another hospital. I am going to miss him too much. :(

 I love these guys!

 One of the first nurses to welcome us to clinic. Nan is wonderful.  

She has been with me since day one and supported us all the way!

Playing ROCKY music and getting the pumped!!

Kids are excited about school getting out.  We don’t have many plans for June since I am required to be at the hospital 3 days a week.  Maybe by July we can plan something much more fun. 

Thanks to Patty and Holli for dinner this week.  We are spoiled by all of you!!

Human Pin Cushion!!

THIS UPDATE IS FOR MICHELLE!  :)

Thank heavens all my tests are over!! Met with the drs. yesterday and got more blood.  All the tests came back with good results and the bone marrow is still clean.  The CT scan showed a small “fungal” infection in my right lung so I had to do a scope for it on Wednesday. It was a pretty simple procedure but the pre-meds were horrible tasting and made me a little sick. Dr. Pearl took a sample and we are waiting for it “to grow” but I have started an anti-fungal medication for it.  I am still sore from the bone biopsy but that is expected.  I feel like a human pin cushion some days. Ha!

My “ neweys” are up to 1200 and I am feeling good. I start chemo Saturday (through Tuesday) and a new pill regimen. (man, I have a lot of new pills. Yuck)  I will get one round of a low dose full body radiation and get my new stem cells on Wednesday.  I am feeling nervous, anxious, scared, and hopeful all at once. These donor cells NEED to work!!!

Girls are doing well.  McCall’s team is playing in State Cup and already won her first game.  I hope they can pull it off again this weekend and win it.  Callie is busy with gymnastics and amazes me with her skills. Jeff is doing well and working on a big project for work.  He got in a new shipment of glow sticks last week with new items.  If anyone needs anything for the summer call him.   My mom helped with planting flowers in the yard and in my pots for Mother’s Day.  They turned out real nice.   I miss working in the yard but dirt is my enemy for awhile.   For Mother's Day Jeff and the girls gave me/us a night at the Homestead in Midway when I am ready.  I can’t wait to go and enjoy all the amenities they offer.

I will post more as the treatment continues. Once I am done it is a waiting game.  Thanks Roni and Patti for dinner this week.  We are grateful for you!

Getting ready for the next step.

Last Thursday was the start of the “pre-tests” I have to start for the next transplant.  I was at clinic 6 hours and got platelets, blood, did an EKG/Echo, chest x-ray, radiation measurements for transplant day and got more pills.

Today was more invasive with a pulmonary breathing test, drinking gross contrast for a chest and abdomen CT (going through the “donut” as I like to call it) and another bone biopsy. (OUCH)  It was just as painful, but I think I might be getting used to them.  It feels like I’ve been hit with a baseball bat but within a few days it won’t hurt so much.

My numbers are looking good. My “neweys” are at 1100, blood and platelets are holding (however I did need platelets today). Kidney and liver are doing well.  All good signs!  We are meeting with the doctors on Thursday for results of all the tests and then the pharmacy tech. to start my new pill regimen. We’ll know more if the marrow is still clean in a few days.

We ran into two friends today and they are doing well. It is so nice to see that others are thriving.  Met a young man named Ryan that had leukemia as a child and beat it.  It has come back so he is at East 8 getting ready to have his first bone marrow transplant.  I gave him advice and wished him luck!  (My heart aches for him too.)

My energy is good and I feel strong.  I am more nervous for the side effects of the transplant.  I never had issues with my last donor so hoping this goes well. Thank you to my donor for the sacrifice you are making for me.  I am forever grateful.

Thanks to the Witt’s and Garrett’s for dinner last week.  YUMMY!

Happy 40th Jason

Jeff and I surprised Jason with a AVENGER birthday party last week. (May 4th)  He turned 40 and loves Marvel Comics. It was perfect that the AVENGERS opened on his birthday (even though we could not see it that day).  We made it up to him by seeing it the next day!

 Happy 40th Jason

 Yeah! It's my birthday

Make a wish!

The Good Vibes are Working!!

Things have been pretty slow around here since I posted. Continuous trips to the doctors for updates and infusions. Staying close to my “cancer” family and watching some getting better while others are still fighting.   I am so amazed how strong people are doing this time.

We lost a great friend a few weeks ago and it hit me hard. Mark and I have been friends, soccer carpool buddies, cancer advisers and support buddies through this whole process. (He was diagnosed a month after me.)  I miss him a lot. RIP!

Last Tuesday did another bone marrow biopsy.  Didn’t hear anything yesterday and was frustrated.  The phone rang first thing this morning with good news on the line!  The scan shows no detected leukemic cells. YEAH!   They did see some “blast cells” but those could be mine and my body working.   My neutrophils “neweys” are up to 200 (I’ve been at 0 since January -500 is considered normal…I am almost there!)  So other numbers are moving up.

I am not out of the woods yet.  I still have to wait and prepare my body for the mini-transplant in a few weeks. I will continue to do weekly infusions with blood and platelets and well see what my body does.  I still have low energy and get tired a lot but that comes with the disease. I am eating better and trying to gain weight.  Food can be my enemy at times.

Thanks Megan for lunch the other day and for those of you who are still sending cards, calling or dropping off treats on the front porch!