SHOUT OUT to MD Anderson!

I’m sure that all cancer survivors have a soft spot, if not total love, for the doctors and staff that worked together to save their lives.  I am no exception.  So please indulge me a bit while I brag on and promote mine.

Yesterday was my 18-month post transplant tests.  It was the first time I had waited six months between bone marrow biopsies and CT scans!  I have to admit that I was a little out of practice for enduring the discomfort of the bone marrow biopsy.  But it’s a small price to pay!

While waiting for each procedure, I met and shared stories with several folks.  Cancer survivors are very open.  What was interesting to me was how far they had all come.  Two had come from Alaska.  The husband had esophageal cancer and at the facility in Alaska had been given a 10% survival chance.  He called MDA and asked if there were any clinical trials, which there were, and what the survival ratings were (54%) and decided to make the trek to Houston.  That was 12 years ago!  His wife three years later was diagnosed with Non-Hodgkin’s Lymphoma.  I guess you can imagine where they decided to come.  She also entered a trial, and now they both come back once a year for their “12,000 mile check-up.” :)  They were a delightful couple in their mid to late 60’s.  I hope that in 12 years, we will still be coming in for my annual check.

There was another lady from California who had a carcinoma in her stomach.  They felt like they had gotten it, but there was a possibility of it morphing into something else.  There was a slight possibility of a stem cell transplant in her future.  She was very scared about that, almost to the point of refusal, so she and her son asked me a lot of questions.  It was rewarding to be able to give her first hand information from my experience.

Another lady came from Arkansas who had been diagnosed with Melanoma and Lymphoma at 35.  She’s 39 now and doing great!  I didn’t tell her about my buddy, Dave, because I didn’t want to discourage her.  She took several of the same drugs that he did early on.  I obviously can’t say that going to MD Anderson will always keep you from dying.  Sometimes there’s just another plan.  But statistically, MD Anderson saves a ton of lives!!

Why am I mentioning these folks from Alaska, California, and Arkansas (and another who drove over from Bastrop…)?  Because I have met so many folks right here in Houston who won’t drive across town to go to MD Anderson because it’s inconvenient!  The group of us talking yesterday laughed as we shared stories and called ourselves the “it’s way better than dead” group!  That may sound a bit crass, but until you’ve looked death in the face you don’t always know what you might be willing to do.  And for those who aren’t willing, I just don’t get it.  We have the best of the best right in our own back yard.  For some cancers like breast cancer that is so prevalent, several area hospitals have access to the same treatment options.  But for most other cancers, MD Anderson is simply the place to be. 

Heaven is going to be amazing.  I just wasn’t quite ready to go.  But I was willing to drive to MD Anderson!

No More Tacro!

Tomorrow will be my 17-month anniversary since the transplant.  Time flies when you’re having fun!  Last week at my follow up appointment, Dr. Shah finally took me off Tacro, the immunosuppressant I have been on since the transplant.  She has been weaning me down for several months, but it has been a slow process… checking labs, watching my numbers go up and down, etc.  I have been on a weekly dose for a while now…always on Tuesdays.  So today is my first day not to take it.  Wow!  Monumental day!

As I look back over this cancer journey, at some point it seemed to turn more into a transplant journey.  While the purpose of the transplant was to deal with the cancer (which it did), all the focus was on the transplant.  I haven’t even been to a leukemia oncologist since the winter of 2012.  I go to a stem cell transplant doctor...and always will. 

That’s not a problem.  I love her to pieces!  She, by the grace of God and the miracle of modern medicine, saved my life.  My journey has just been different than others’ with different cancers.  I guess everyone’s journey is unique. 

I follow the Bone Marrow and Stem Cell Transplant Survivors Club on Facebook and am humbled by the number of people who have had so many struggles along the way and by the number of little children preparing to walk the same walk.  I am so thankful for the relatively small side effects I endured compared to what was on the list!  

As I eagerly await our fourth grandchild (and enjoy the first three), get to know and train this new puppy of ours (Dixie), and grab onto every precious moment with my sweet husband, I continue to be amazed by God’s grace and count each day as a blessing.  I’m still not sure what God has next for me.  My doctors and fellow transplantees keep telling me to not be in a hurry…that it takes time for the “new normal” to become normal…and that when it’s time, I’ll know.  Until then, I'm glad God knows.

Psalm 139 1-18, 23-24  “O LORD, you have searched me and you know me.  You know when I sit and when I rise; you perceive my thoughts from afar.  You discern my going out and my lying down; you are familiar with all my ways.  Before a word is on my tongue you know it completely, O LORD.  You hem me in--behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain.  Where can I go from your Spirit?  Where can I flee from your presence?  If I go up to the heavens, you are there; if I make my bed in the depths, you are there.  If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.  If I say, "Surely the darkness will hide me, and the light become night around me," even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.  For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place.  When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.  How precious to me are your thoughts, O God!  How vast is the sum of them!  Were I to count them they would outnumber the grains of sand.  When I awake, I am still with you….  Search me, O God, and know my heart; test me and know my anxious thoughts.  See if there is any offensive way in me, and lead me in the way everlasting.”

August 29, 2011 – A Day I’ll Never Forget

Today marks the second anniversary of my diagnosis.  In this realm, we call it our “cancerversary.”  I like my re-birthday better, but this commemoration does come with some good news to report.

Monday was my follow up visit.  Last month’s labs had a few questionable numbers, so I was eager to see if things had improved.  Indeed they had!

To bring this full circle, at this time in 2011, my WBC (white blood count) was high, my neutrophils were low, and my lymphocytes were high. [I understand that these terms are not in most folk’s daily use, but if you have followed my blog you are probably familiar with them by now.)]  Last year at this time, my WBC was low, my neutrophils were high, and my lymphocytes were barely existent.  We now come to this year’s labs.  My WBC is normal, my neutrophils are normal, and for the first time since the transplant, my lymphocytes finally inched back into normal range!  Dr. Shah took me off two of my “anti” drugs and decided on one more month of weekly Tacro just to make sure this wasn’t a fluke.  I am so close!  These were the best labs to date.  For the first time since diagnosis, I am finally “normal!”  At least according to my labs!  :)

How amazing our God is!  While I still don’t understand this precious gift of life, I am so very thankful for every moment of it.  I am thankful for the countless prayers offered on my behalf over the last two years.  I am thankful for the knowledge and wisdom of my doctors and the tender care from my husband, family and friends.  I am still dealing with the loss of my buddy, Dave, but I know that we have both won, just in different ways. 

Two years ago, I brought a pile of lab reports to Paul at a Chinese restaurant and shared news that neither of us fully understood.  Today we celebrate a new set of labs that after two years into this journey we much more easily comprehend.  And today our tears are of joy rather than of fear. 

Normal never looked so good!

Romans 8:28  “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

My Buddy Dave – In Memoriam

Dave Kinler and I have walked the cancer road together for the past two and half years.  He was diagnosed about six months before I was.  My official two-year anniversary diagnosis will be on the 29^th of this month.  He had lymphoma.  I had leukemia.  Sister cancers. 

We met when I started working for a long time friend at his commercial security company, ASI.  Dave and I were cut from the same cloth.   We had all sorts of marketing and networking ideas and were always meeting to come up with new ways of getting the job done.  The waitresses at Denny’s knew to put us toward the back and just keep bringing the coffee.   We actually were at an event one day that made mention of a Lymphoma/Leukemia Society thing.  We just laughed and said they had one of each right here.  When we would speak at events, we would play off of one another like it was rehearsed.  We were a natural team.

Dave went through several treatment regimens, clinical trials, etc.  Just when one thing seemed like it might be working, the table would flip.  But Dave’s attitude would never waiver.  His belief and faith in God was always steady.  The doctors at MD Anderson continued to try different options, with Dave going through several hospital stays because of various negative side effects.  Then his lymphoma morphed into leukemia with 17p deletion…the same as mine!  Weird!!  The big problem with this, however, is that once your body has been exposed to numerous treatments, the meds become less effective.  Plus, 17p del does not respond effectively to chemo anyway.  But they had one more idea and then the hope of getting him in for a stem cell transplant.  We had that conversation three weeks ago.

Today, (August 21, 2013), Dave’s daughter, Andrea, texted her high school friend, Holly, (who is also best friends with my daughter, Bethany, who knows that Dave and I are buddies), to tell her that her dad was dying.  Bethany called me immediately.  Dave and I don’t usually go more than a few weeks without talking, but Paul just had back surgery and it had only been three weeks!  I immediately got on the phone, email, facebook, text…trying to get in touch to find out where he was and if I could come see him or if it was just time for family.  His son-in-law called me back and filled me in.  They were very gracious and welcomed our visit saying that he had spoken of our friendship and me often.  :)

With Paul in his back brace and pain pills in his pocket, we headed down to MD Anderson.  We parked in the parking lot that Paul always parked in when I was in the hospital.  It was surreal being in that part of the building again.  The tears had already been flowing, but Paul kept reminding me that I needed to be strong for Dave.  When we got there, his family (having already had a little more time with this) was very upbeat and positive with their dad, encouraging him about who all he was going to see in heaven soon and that they were still going to talk to him everyday! 

I was honored to get to spend the next hour and a half with Dave and his family, holding his hand, telling stories, watching him have his last Coke (even though it was probably against the rules), participating in his last communion, and telling my dear friend that I loved him and the friendship we shared.  It was not a long one, but it was very dear.  It was during one of the most difficult times of both of our lives.  He was an encouragement not only during the year that we started working together but even more so during the year when we couldn’t.  He would call, we would talk about our families, our treatments, our Lord, and we would make grand plans of business we would do in the future when we didn’t have cancer any more.  We would talk for hours during those months when I couldn’t leave my house after the transplant.  We did the same when he became home bound.  We would email ideas.  He would have an idea, I would add a little, and it would grow into something wonderful that we would plan to do when we were better.   But cancer.

Why did I live and he didn’t?  Do you know how hard it was to walk into that room today and stand before his sweet wife alive and well, a year plus out of transplant, while her husband lay losing the battle?  In these last two weeks, his SLL now CLL transformed into Richter’s Syndrome, then into kidney failure, and other vitals just shut down.  I had the marker for that, not him.  Why didn’t I get it?

I thank God for the grace and goodness He showered upon me.  I will never understand, however, why one is given a little more life here and another is taken home for life everlasting.  I do know one thing for sure.  I don’t know how anyone goes through this without God.

So Dave, I will miss you buddy.  As it says in 2 Tim 4:7 “You have fought the good fight.  You have finished the race.  You have kept the faith.”

Until I see you again.

Your friend, cancer buddy, business dreamer planner partner, sister in Christ,

Tamara

…Dave passed at 7:26 this morning, August 22, 2013.  Welcome home.  No more cancer.

Switching Shoes

For the past two years, family and friends have been praying for and walking beside us as we battled CLL, tackled a stem cell transplant, and have made it successfully thus far to the other side.  Now it is time for Paul and I to switch shoes.  He will now take on the patient shoes and I will be wearing the caregiver ones…though not nearly as splendidly as he did!

Next Thursday, August 1, Paul will be going in for a Transverse Posterior Lumbar Interbody Fusion between L4 and L5.  (I hope I get this right.)  The operation takes approximately three hours to perform and hospitalization is usually three to four days.  The Fusion involves adding bone graft to an area of the spine to set up a biological response that causes the bone to grow between the two vertebral elements and thereby stop the motion at that segment.   They also insert a cage made of either allograft bone or synthetic material (PEEK or titanium) directly into the disc space.  Screws and rods will be used to provide immediate stability so that pain is minimized and immediate ambulation is possible.  The recovery from this operation is six to nine months, the end point being when the bone fully heals and your have returned to function.

So, several prayer requests here.  First of all, please pray for successful surgery…from anesthesia to the surgery itself, no nerve damage, etc.  Please pray for Paul…that he would be able to rest in the knowledge that God has this…just like He had me.  Please pray that the surgery would work.  There is an 80% chance that this will work.  We would like to be in that 80%.  We won’t know that for a while after the surgery.  Please pray for me as his caregiver.  I am not as strong as Paul was for me, but I am confident that I am strong enough!  Please pray that God will provide all we need health wise, energy wise, and any thing else that is needed to take care and move through rehabilitation.  Please pray that Paul would be able to rest.  He can’t sleep through the night. 

He is scheduled to be home from work for six weeks.  He will have a back brace for four to nine months.  He’s looking into new hobbies to pursue like learning to play his dobro.  Pretty sure he won’t want to play Phase 10 every day!  :) 

Our journey again takes a different turn.  Maybe one of these days it won’t be headed for a hospital…but as long as we’re headed in the same direction, I guess we’re doing ok.

Tamara

The Difference a Year Can Make

I am starting this post with the medical info that might be of interest to the majority of those who have been following our journey this past almost two years.  The rest will focus on progress, accomplishments, and the return to the simple joys of living.  There are things that I don’t want to forget.  And for anyone who is beginning or in the middle of a similar journey, I would like to encourage you that it does get better.  There are weeks and months that it seems like it never will…but it does.  The difference a year can make!

A couple weeks ago, I had gotten some preliminary results from my one-year tests.  Yesterday, I got the official results.  My T-cells, my donor cells that fight the CLL, have finally jumped from 60% to 94%!!  My doctor has been weaning me down off my Tacro little by little which has allowed the donor cells to take over.  As of this week, I am now down to one per week for the next four weeks.  She will recheck my labs again at that point and give me a call, but I don’t have to go back to MD Anderson for eight weeks!!  This will be the longest stretch since this whole thing began.  I may have withdrawal symptoms!  :)

She also had good news regarding my kidneys.  My creatinine levels were good and some of the other numbers that had been unusually high a month ago have all come back down into the normal range.  While there probably still is some measure of damage which will continued to be monitored, I am not in any danger at this point and just need to continue to drink LOTS of water!  And since the culprit seems to have been my Tacro, the fact that we’re almost done with that is also positive.  So that was very good news.

The last question I had was in regard to my immune system.  While it is still low, it is improving.  It is quantified by my lymphocytes, which will be the last aspect of my white blood count to come back.  They continue to be low…but slowly growing.  She tests this by a CD4 count.  The goal is 200, and I am currently at 181.  So close and yet still a ways away.  I have been given permission to reintroduce salad into my diet only at home when I wash it (big win), “swim” in a very clean pool only up to my waste (no getting my face wet), and to wear makeup (new and mine).  I also got the last of my immunizations, until next year, as well as a return of thick, wavy hair.  Little things.  :)

My shoulder has also begun to improve due to personal physical therapy.  After the test results came back negative, I was able to begin gardening (with mask and gloves) and I have been able to begin doing some of the prescribed exercises.  While it’s not perfect, my shoulder has definitely improved.  The year of being down must have atrophied my muscles and caused much of the problem.  I am slowly rebuilding my muscle tone a little at a time. 

We have much to be thankful for.  There were times this past year when it was hard to see the light at the end of the tunnel.  Thank God that He is the Light!

There have been so many milestones during the past couple months that I don’t ever want to forget.  If you would like to share in these, please feel free.  But this is for me.

Last year, we spent my birthday, Mother’s Day, and our anniversary in the hospital.  This year, we celebrated my re-birthday and birthday weekend at our place in the country with family and friends.  It was quite a time and one I’ll never forget!  Paul and I took a week-long trip at the end of May for our anniversary through central Texas.  We spent some time at our place in the country, then went hiking at Pedernales Falls and Hamilton Pool, saw some beautiful scenery, stayed in a B&B, visited a favorite winery, and ended up in San Antonio and the Riverwalk.  It was a wonderful week!  What a difference a year can make!

Shortly after returning home, I drove to Dallas to pick up my oldest grandchild, Dana (almost 6), to bring her back to Houston/Spring to spend the next week with us.  This was the longest drive I’d made by myself since diagnosis.  On our way back, we stopped by Oletha for an afternoon of fishing, 4-wheeling, and petrified wood hunting…all by ourselves!  :)  She caught the first fish, but Tadee had to (for the first time since I’d been restricted against anything that might have bacteria) unhook the fish.  Another first.  We had a wonderful afternoon and then headed the rest of the way home.  That was Friday.

Saturday, we joined Uncle Josh, Aunt Kylee, and cousin Caleb at the Museum of Natural Science and enjoyed looking at dinosaurs, the ancient Egypt exhibit, and the butterfly center.  We took the train ride afterwards.  For a long time, I couldn’t even be out in crowds.  That night during her bath, this sweet child asked if she could wash my feet.  So I sat on the side of the tub while she gently massaged my tired, old feet, asking me if that felt good.  Precious child.  Precious moments.

Sunday, we went to church then she helped me fix lunch, peeling potatoes and snapping beans.  It was a rainy afternoon, so I taught her several new card games.  Later we were able to feed the ducks and fish in the pond across from the house. She’s getting quite the casting arm!  She also took a scooter ride while Tadee and PawPaul followed behind. 

Monday was gardening day.  Tuesday was movie day with us and her great grandma, Mama O.  Wednesday was craft day.  (Craft day continued on….)  Thursday we went to the Children’s Museum.  Friday was baking day and ended around the fire pit on the patio making s’mores.  Every day was filled with little extras like reading, coloring, and other favorites.  Almost every evening, we ate dinner at the back porch table under the big red umbrella.  We read, we prayed, we sang, we snuggled, and we finally slept.  We made a lot of memories.  We made up for a lot of lost time.  I hope I never go through another year when I can’t see my babies. 

Saturday, we handed her off to the next set of grandparents for week #2.  Even though I was tired, it was the best tired I’d had all year!  The fact that I could even keep up was evidence of how far I’ve come.  The difference a year can make!  We got to see Bethany, Kevin, and grandbaby #3, Ethan (2), for a little while later in the day when they were coming down to visit Dana and celebrate Father’s Day.

A week after having Dana, we had the opportunity to have grandbaby #2, Caleb (3 ½), come spend the night.  The next day I took him to his swim lessons and then kept him back at his house while his daddy worked and his mom attended a class.  He has an imagination as big as Texas!  We played rocket ship with building toys that belonged to his daddy.  We played baseball as long as he got to pitch!  We fed the ducks and turtles.  We read books and built with blocks.  Both grandbabies like the same songs…the same songs I sang to their parents.  There is something about being a grandparent, about watching the child of your child.  It is the thing that I missed most during my time of restriction.  I am so thankful to have this back.  I am also thankful to have just found out that grandbaby #4 is on the way.  :)  Dana and Ethan will be getting a brother or sister.

A year ago, we were still in our first 100 days, staying at my mom’s, and going to MD Anderson every other day.  I was having regular ER visits because of migraines and nausea.  Paul was juggling work, me, keeping up with the house, and his own health all with never a complaint, always completely loving.  God must have given him an extra measure of grace and strength.

It has been a long year with a lot of bumps along the road, but by God’s grace and a lot of prayers we’ve made it!  We are grateful for these couple months of respite before our journey takes another turn.  Paul is going in for back surgery on August 1.   It will be my turn to serve as caregiver.  While my role will be nothing in comparison to his, I pray that I can care for him in the same manner he cared for me.  Of course, I won’t be juggling a job on top of it.  Please pray for successful surgery, quick recovery (even though it is expected to take 4-9 months), and for everything to go smoothly with regard to his work. 

We are hoping that by the time our fourth anniversary roles around that maybe we can be done with all these medical maladies! 

Indeed, the difference a year can make!

The Cure Can Kill Ya!

This morning, just toward the end of all of my one-year tests, I had an assessment appointment with the endocrinologist at MD Anderson.  My calcium levels have been a little high for quite a while, even though I was diagnosed with osteopenia some time back.  Dr. Shah wanted to see why my calcium wasn’t being absorbed into my bones and only staying in my blood.  Then recently my parathyroid level has been slightly elevated, so she wanted them to look into that as well.  I did a little research and saw that they could all be related.

So since this seemed like it was going to be a fairly boring appointment, I didn’t see the need for my mom or anyone to come with me.  I’m driving much better now, so since it was an early appointment I drove myself.  After the normal vitals and paperwork, the first doctor (a “fellow” actually) came in and reviewed for a few minutes and then simply told me, “You have stage 3 kidney disease.” 

Yep, I couldn’t think of anything to say either.  Why am I always by myself when I get this kind of news?!  Of course, I was not by myself…God was there.  Thank goodness! 

My mind was totally blank.  I couldn’t remember anything about anatomy or kidney disease or anything.  So I asked, “Are there one or two kidneys?  Two, right?  And aren’t there kidney transplants?  And what comes before that?”  The doctor kindly answered that there were indeed two and that dialysis came long before transplants but that wouldn’t start until stage 5…and I was a long way from either.  However, in my mind, which was still whirling, 3 did not seem that far from 5!

After a discussion of family history with the second doctor, the culprit seemed to be my Tacro!  The immunosuppressant that I have been on since and because of my stem cell transplant has basically destroyed my kidneys…well not completely.  Fortunately, I am on my final weaning off of Tacro, so hopefully it will not have a chance to do too much more damage.  Unfortunately, the damage does not seem to be reversible.  So no more Advil, Ibuprofen, Aleve…ever.  Tylenol is ok, as are my migraine meds.  If I thought I was drinking a lot of water thus far, we ain’t seen nothin’ yet!

As far as the high calcium, parathyroid, osteopenia and all that, they will do more labs, keep things monitored, do a follow up bone density later in the year, etc.  This was the boring stuff I was expecting.  :/ 

Oh, it gets better.  I had an MRI last Thursday evening to try to pinpoint the problem with my left shoulder.  I was certain that this was where they would find the issue.  Wrong.  The MRI came back negative.  They told me while I was there.  Not that I wanted to have surgery on my shoulder or anything.  I just wanted an answer!  The doctor, however, seeing my frustration, examined my shoulder and promised to email Dr. Shah and continue to pursue the issue until it is resolved.  When something really hurts and tests continue to come back negative, it makes you feel like you’re crazy!  He didn’t make me feel crazy.  I think I like this doctor, even though he was the bearer of the not so happy news.

God has carried us through much more than this.  We trust that He will continue to guide us through these occasional cloudy days.  This one was down right foggy.  That’s why it’s so important to hold on to His Hand.

Not letting go…

Tamara

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.

8 ½ Months and Counting

I know my posts have been few lately, but I spent two days at MDAnderson this week and got some news to share.  The good news is my T cells that have been stubbornly hovering at the 60/40% rate have jumped to 78% donor cells!  The continued reduction in the immunosuppressant drugs is obviously doing its job.

The less good news is that my bone density test came back as having osteopenia (the step before osteoporosis).  It is not uncommon for patients who have had chemo and steroids to have this, plus my mom has osteoporosis and RA so I’m a prime candidate.  The weird thing is that my calcium level is high.  So on my next round of labs they’re going to run a PHT (?) test.  I think it checks why I’m not absorbing the calcium.  They have already sent me to a rheumatologist for consult.  More doctors….  The main thing that I need to do is get myself up and exercise!   That seems to be the best treatment along with vitamin D.

The depression is better.  Not perfect, but better.  After my lift around Christmas, I had another low and finally filled the prescription for Wellbutrin.  I have not had any side effects.  While it’s not working miracles, I am better able to get out of bed in the morning and get through my day.  So maybe it is.  I watched a video of Caleb, my grandson, and me doing wheelies on a little 3-wheeler that was taken before I got sick.  It was hard seeing my energy and laughter.  I want that back…now.  I talked to Paul about it and he assured me that I would get back to that.  It just takes time.

For those of you walking this walk, don’t be surprised by joint pain that is similar to how it felt when you got Neupogen shots.  My doctor said it was because of cell growth.  My shoulders, arms, elbows hurt most of the time.  I’m sure that this will go away just like my hair loss did.  But for now it is most uncomfortable. 

On the positive side, after a year of hassle, we finally won our Social Security battle.  It’s not much, but it will definitely help with the mounds of medical bills.  When we went for the hearing, we expected to go in together.  When they called me in, they wouldn’t let Paul come in, so I had to face the judge by myself.  I almost cried, but I answered the questions and got it done.

The latest weird thing is this invisible itching at night and inability to sleep.  Don’t ask me.  I don’t think this one is even in the medical journal.

But the sun is shining.  God has given me another day.  And I know that one of these days I’m going to feel like me again.