11 Months - Counting Down

Two days after celebrating the resurrection of our Lord, I am a month away from celebrating my one-year anniversary of my re-birth.  He indeed has given me new life not only spiritually, but He has given me new life physically as well. 

The last round of tests have shown basically the same as before.  I am 100% donor in one area and between 60/40 and 70/30 in another.  They had tried to start tapering down my Tacro (immunosuppressant drug) so the donor cells would have a better shot of taking over.  However, my eosinophils (part of my white blood cells) became elevated so they had to increase my Tacro back up.  Doing so made my eosinophils come back down.  I have continued at that level since.

At my last check up, Dr. Shah said that next month, at my one-year marker, she is going to start tapering off the Tacro again, hoping for better results.  Getting off and on Tacro has always been a balancing act.  Even at the beginning, they were always increasing and decreasing it weekly.  At one point, I was up to 11 per day.  At lowest tapering, I was down to three per week.  I’m back to one per day.  They have to get me off of this drug for me to get completely well.  So please pray that my body will respond well during the next tapering phase.

They are also planning on taking me off all of my “anti’s” – antifungal, antibacterial, antiviral.  It’s a little scary to be taken off my anti’s because they have been helping to protect me during this time of not having an immune system.  I have now had two of my four+ vaccination sets.  Several of my numbers are finally up in the normal range.  And most importantly, I am in remission and I am no longer 17p deleted. 

There are a few problems that are minor in comparison.  My shoulders have had joint pain since last November.  She said that it was normal post transplant.  But it has continued and gotten worse.  She sent me to a rheumatologist and he feels that it is tendonitis.  He will be doing an ultrasound and steroid injection in the left shoulder next week, since that was the worst side. 

She is also concerned because my calcium level continues to be high, even though I’ve been diagnosed with osteopenia (not uncommon with chemo patients), and my parathyroid hormone is elevated as well.  She is making an appointment for me to see their endocrinologist to see if there is anything going on there.  My creatinine levels are up a bit, so I have to be sure I stay ultra hydrated.  She doesn’t leave any stone unturned.  I’ve had a recent colonoscopy to make sure there were no issues there.  Everything was clean as a whistle!  :)

Easter Sunday was our first time to host a family gathering since my transplant.  It was wonderful to have our family in our home again!!!  I had also recently, finally been given permission to work in the yard again, as long as I wore my mask, gloves, hat, sunscreen, long sleeves….  It has done my heart good to be able to work outside again.  I think I probably over did it a bit by wanting everything to be just right because I have spent most of yesterday and today recuperating.   But it’s ok…it was worth it!!

I have gone from going to MD Anderson every day, to three times per week, to twice a week, to once a week, to twice per month, to now once a month, except for the extra visits thrown in.  I had to have at least two naps every day for a long time.  Now I only need one, and some days I don’t have one at all.  I still get tired when I try to do too much, but I can do so much more than I could six months ago! 

I think I am finally learning my new normal…and even that continues to change.

Thank you again for taking this journey with us, for your prayers, and for your encouragement. 

Tamara

P.S.  My buddy, Dave Kinler, has had a twist in his journey.  What started out as lymphoma has developed into leukemia, 17p deleted.  He is about to start a new trial, his 3rd.  Please pray for success.  He needs to get his cancer into remission so a transplant will be an option.  He waits patiently in God’s Hands.