A Letter to My Donor - My "Re-Birthday" May 2

Where do I begin?  Thank you for saving my life!  I am about to celebrate the one-year anniversary or the first “re-birthday” of my stem cell transplant.  It wouldn’t have happened without you.  While I’m sure there could have been other people who could have been adequate matches, you were a perfect match and that has made this process much easier and more effective than it could have been otherwise.

When we were told that I had leukemia, I had been remarried to my high school sweetheart for just over a year when I was diagnosed.  It was quite a blow.  We had dreams of growing old together, and now we were faced with the probability of only having a mere three years.  Because I had the type of CLL that had all the negative prognostic markers (17p deletion, unmutated, CD38, ZAP 70 positive, and ALC [Absolute Lymphocyte Count] doubling time of less than a year), I did not have time to sit around and wait for them to invent a new drug that might cure me.  So we took the aggressive route and went directly for the stem cell transplant.  So far, it has worked.  I am in remission.  :)

I don’t know if you are a follower of Christ or not, but it was the power of prayer and God’s grace, love, and mercy that saw me through this very long year and a half.  His Word has brought comfort and peace and carried me through some very dark days.  There were many people praying for you as well, before you ever said yes…and of course afterwards. 

My husband, Paul, was…is my amazing caregiver.  It is a task that I will probably never quite fully comprehend, until the day that I might be given that job.  He selflessly took care of me and everything else is our life while holding down his job and taking care of our home.  We stayed with my mother for the first 100 days after I got out of the hospital because it was closer to the hospital, where I had to go back to everyday, then three times per week.  The two of them sacrificed themselves in so many ways in taking care of me.  Family and friends gave of their time to drive me to MD Anderson day after day.  But again, none of that would have happened if you hadn’t been willing to give.

I have two grown children, four step children, and three beautiful grandchildren (Dana, 5; Caleb, 3; Ethan, 2).  I am their Tadee, and they are my delight.

I didn’t think my relationship with my husband could have gotten any better, but it has only gotten stronger throughout this past almost two years.  Last year, we spent my birthday and our anniversary in the hospital.  This year, we are looking forward to taking a short trip together, actually in just a few weeks, to celebrate our life together…a life that we will hopefully now be able to enjoy for many more years to come.  Thanks to you, to our medical team, the support of family and friends, and to our amazing God, I've been given the gift of life and time.

We would love to meet you some day and thank you in person.  Taking you to dinner seems the very least we could do! 

So, M-47, I owe my life to you.  Paul and I owe our future to you.  My children and grandchildren owe a lifetime of memories to come to you.  My mother didn’t have to have her heart broken by losing a child because you gave.  Thank you for giving life-giving cells.  It touched more lives than you’ll ever know.

Tamara

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.