Getting a little normalcy again

Since my last post things have pretty much stayed the same.  I feel more energy and trying to get out a little more. (I still have to be careful of germs and really large crowds).  I only see the doctors every other Friday (but continue weekly blood draws).  Still have a friend fighting hard.  She wasn’t doing well for weeks and after getting her “last rights” Friday night she woke up Saturday a whole new person.   Whether you believe in miracles or not she is certainly showing me they are true.  I hope things are going to stay positive and she is out of the hospital soon.

 I still pick and choose what I want to do.  I’ve painted a wall downstairs, had COIT clean all the rugs, our large sectional and Jeff’s car professionally. I cleaned out the kids closets and got rid of TONS of stuff that doesn’t fit. (Damn kids growing too fast.) This Friday I am going to walk 2-2.5 miles of a 5K race to raise money for the school.  Actually excited about it…..cuz I know I can do it! 

Just last week my other cousin (wife) brought her new baby boy Noah over to the house on her way from San Jose.  Noah is 5 months old with the craziest hair you’ve ever seen.  It sticks up no matter what you try and do.  She and her family stayed for dinner and we caught up.  I am so lucky I got to see them.

McCall is still doing well with soccer.  She is an awesome forward and a great scorer.  I love watching her games again. Callie had her first gymnastics meet last Saturday and took 1^st place on floor, bars and vault.  Then she took 1^st place in all-around for her age division. (Considering the night before she stepped on a nail at a friend’s house and had to go to insta-care for a tetanus shot and have her foot wrapped up.) I was one proud mama and she smiled all day.  

Obviously I am excited for Halloween.  I’ve bought some new stuff and have some fun ideas I want to try to make. I really want to get my decorations out but I think I’ll wait a few more weeks. 

DAY 100

Day 100!!

Today’s weekly visit was great.  Numbers are up and doing great.  Lots of blood drawn and best of all I got my pic-line out of my arm.  I am so excited about it.  I will have to get poked each time I go to clinic but for now it is sweet relief. Awwwww! 

Still have a friend in clinic fighting hard.  My heart is breaking for her and hope she gets home soon.  The hospital used to be a scary, horrible place...but now I feel like I am with my second family when I am there.  LOTS of hugs, kisses, well wishes and hope.  I am grateful :)

My baby cousin Erica and her husband Trace (who currently live in Hawaii) flew home to show off their new baby Estelle.  The girls and I rushed over to play with her.  She is only 7 weeks old and so cute.  We gave her bath, lotioned her up and played with her all day.  My favorite stage with babies!
Congratulations to Trace for completing his dentistry license.  We are so proud of you.  Guess we'll have to fly to Hawaii to get a cleaning. :)  HINT

 

 Kids are back in school and it is sad they are gone all day.  I miss the house noisy sometimes.  Bindi and I hang out and play together.  McCall has been awesome at soccer the past few weeks. The game last week she scored 4 of the 7 goals for her team.  (They won 7-0). Their game against Murray on Tuesday they won 6-0 with McCall scoring 2 goals.  It is so much fun to watch her.  Currently they are undefeated.  Callie is getting ready for her first gymnastics competition.  She is so good and extremely flexible.  I love watching her too, but get so nervous. 

Day 96

Day 96

BONE MARROW IS CLEAN!!! Yipeeeeee!!

Bone marrow biopsy was done on Friday. OUCH!  I was a nervous Nellie with high blood pressure and rapid heartbeat.  (I always have low blood pressure.)  I was the 5^th patient in clinic to have “the drill” instead of the manual tool to remove the marrow.  The pain was about the same but works faster.  The drill reaches in and gets a better sample too.  Got a call Friday night that the blood slides looked clean but needed to wait for some other tests to confirm.  Today I got another call that so far everything is clean and no signs of leukemia!!!!

This Friday (my 100 day mark) we’ll discuss with the doctors the next steps.  Need to follow up on some breathing treatments, maybe some scans and more blood work.  Hopefully I will get the port out sooner than later.

Two good friends are back in-patient and fighting this horrible disease.   My heart breaks for them. Send all of your good vibes to them….I have already been blessed!

Day 86

Clinic was good today.  NO BONE BIOPSY!!   

While things are fresh on my mind I wanted to update everyone.  Numbers are back up a little (platelets were the biggest jump to 131).  My neutrophils are still going down but doctors still think it is medicine related and not to worry.  My 100 day mark is August 31^st but next week we’ll do the biopsy (sad face) to get a head start on the testing just to make sure everything is clean.

No more home magnesium infusions just more magnesium pills. Removing some other pills and adding others.  No more depravera shots (stops menstruation and pregnancy). I am probably already starting menopause so as long as I don’t get a boyfriend I should be OK and not get pregnant. HA (With 5 years of infertility wouldn’t that be funny?)  NOT!!  I gained a few pounds since last appointment.  I hope they stay on!  I feel like I have more energy but still get tired. 

Still doing the Lovinox shots twice a day in my stomach.  Jeff and I have a system and he is a champ at doing it. They are still horrible, but maybe after the bone biopsy is clean they will consider taking out the port and recheck the clot.   Had the port in since January and I am getting tired of it.

Learned today at clinic that 4-5 of my close friends are all doing well and fighting this horrible disease.  It totally made my day and I want to shout out!!  We all need to get together and celebrate!!

Girls are great and we are busy with sports, getting ready for school, doing nails, playing cards and catching up on movies.  Jeff is working hard and takes good care of all of us.  I am so lucky to have him as my caregiver, husband, friend and fighter!

Thanks to all of you for your support, prayers, phone calls and thoughts. It does not go unnoticed and we are so appreciative!

Day 79

Day 79

Last Friday at clinic my numbers came back lower than the previous week.  Dr’s.  think it is medicine related and took me off 2 pill medications they think were causing it and added a different one.  Said it takes about 2 weeks to see changes.   Today at clinic numbers were down a little again but not by much…so next week if they aren’t getting better they want to do a bone biopsy to check the marrow.  Obviously hoping for a spike in the numbers and no biopsy until my 100 day mark (August 31).

My port arm has been sore for the past while.  It was getting worse and I couldn’t lift it high or sleep on it well.  I knew something was weird and talk to the PA today.  She was concerned so they sent me down to EKG and sure enough….I’ve got a blood clot near my port. AUGHHH!  Rather than remove the port (since I need it a few more weeks for home infusions) I now have to do the Louvinox shots (2 in my stomach every day until the clot clears or they remove the port).  It burns like crazy going in and Jeff hates giving them to me as much as I hate getting them. But we have a system and in 2 days I should notice less pain in my shoulder and arm.

I’ve felt a little more energy the last 2 weeks.  The scale moved up a little the past couple days. Yeah! I was able to take Callie school shopping and did great.  Had energy when I got home and did laundry too.  Still fighting the food issues but it is a slow process. McCall turned 15 last week end and is studying for her driver’s permit.  Ahhhhh!   She made the Skyline High Soccer team and we’ve been busy with that.   Callie decided to stay in gymnastics until the fall.  She and Jeff have been running track and she loves it.  Maybe that might be her new “thing” come spring (?)  Both girls are not excited for school to start, but what kid is?  I am going to miss them being gone all day again.

 I’ve also been staying up late watching the Olympics.  I am addicted to it and have loved watching our athletes’ compete, win metals or at least show good sportsmanship if they don’t.  It is crazy what some of them can do.  I am inspired to get into better shape faster.  Sure did break up the monotony in my TV watching life. (ha)

I am a little nervous about the counts but Jeff also assures me things are medicine related.  I am still positive and hoping everything is alright.  I can’t think about negativity all the time and just try to live each day the best I can.  10% MEDICINE   90%DETERMINATION!!!

Day 61

Nothing real new to update so sorry things have been slow (which is a good thing).  I am on day 61 from transplant and so far things are going well.  My chest CT came back clean so I got off the voriconozole pills (which I hated…made me sick sometimes).  We will recheck with another CT in 4 weeks to make sure my lungs are clear.   Even in the summer months people get sick so I have to watch out and still pick going out in crowds. 

My CMV (small infection) came back negative as well.  I was taking an antibiotic infusion twice a day to clear it up.  No more infusions for that just another pill.   I am still doing the daily 2 hour magnesium infusions to help my kidneys.  (All the pills I take take a toll on my magnesium levels so I have to supplement for it.)  Jeff is still my nurse and takes good care of me.

All numbers are looking great and the doctors are happy with the progress.  I have started walking more and even did 4 flights of stairs today (whew…that was hard).  I have started with refried bean cans as weights for my arms and do small work outs with those.  Sounds funny huh?  I have no strength and need to build my muscle back up slowly.  I am still fighting the scale and trying to gain weight.  I got some great advice off Facebook this week from family/friends.  It is a slow process that I fight daily and sometimes I win other days I don’t.

Girls are doing great.  McCall is at BYU camp (I know……it was hard to let her go…..but she has all her UTES attire to wear!) She is going to have fun. She is staying in the dorms with other girls/friends and learning new skills.  There are a lot of fun activities, training and even swimming planned.  I miss her already! Callie still continues with gymnastics, but is thinking of maybe trying something else.  We are talking and looking into other sports she might like. It is her decision and she is trying to decide.  Jeff is busy with work as always and works from home about 2 days a week.   I try to help him where I can when it comes to household chores.

Thanks to the Baldareses’ and the Reeses’ for dinner this week.  It was great!  We are thankful for such great neighbors!

Day 43

Platlets: 143
Red Blood: 28
White Count: 3.9
Tacro: 13.6
Neweys: 2300

Weekly clinic visit went well.  Got rid of some pills but added another.  Skin rash is gone and numbers are still climbing. I feel great!   Lack of energy and being tired a lot is still a frustration, but I nap if needed.

Cimerisim test came back 100% donor. YEAH!!   This is a good sign that the donor stem cells are working.  The doctors consider me in “remission” but I am so afraid to use that word since last time I did the cancer came back 2 weeks later.

Need to try and eat more (which is a constant struggle) but I am doing the best I can.  Girls are going boating with friends today and I am happy and jealous all at the same time.  Hope everyone is having a great weekend!!