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.

The Magic of Christmas (Seven ½ months post transplant)

This time last weekend, Paul had taken his last two vacation days of the year (the rest having been spent taking care of me in the hospital or taking me to doctor appointments or ER trips) to take me to the country with the hopes that the miracle healing that God often does in the quiet places of His world would find it’s way into my heart and mind.  While I always enjoy being up there, it didn’t seem to be working.

The meds the psych doctor had prescribed had left me worse than I was to begin with.  (They all react differently on different people.  Not so well on me.)  I was sick to my stomach, crying, tired, mopey, seemingly more depressed than before the pill.  By Sunday we decided to stop the pill.  The nausea resided after a while, and we decided to pack up and go home a day early.  The country therapy didn’t seem to be working.  I know it made Paul sad, and it made me sad too.  He tries so hard to make life good for me.

So Monday we decided to finish all the Christmas errands since I had doctor appointments the rest of the week.  We spent the whole day together in and out of stores, talking, and just being together.  We realized half way through the day that I wasn’t the same sad little girl that he’d been living with the past few months.  I felt almost back to normal.  It was like the fog had lifted.   My mind felt clearer than it had in months.  We had no idea what to attribute it to.  Four days with my sweetheart?  Had the Zoloft helped behind the scenes while I was enduring the horrible side effects?  Will I be this way tomorrow when Paul goes back to work?

Well, today is Saturday and I can enthusiastically say that I have made it all week.  I still have to talk myself through certain things and tell myself what we’re going to do today!   But the progress has been remarkable.  And it helped hearing from the oncology psych doctor that the timing of my depression was completely normal compared to other transplant patients.  Doesn’t make it any easier.  But it does make me feel less alone and weird.  The encouragement continues to stand…you must let the healing continue.  Once you get to your one year anniversary, things will start to turn around.

Maybe Santa came early.  But I believe something a little deeper.  I know the prayers that have been prayed for me.  And in this Christmas season as we prepare to honor the coming of a little baby who was not just any baby but God’s only Son, sent to live among us until His time was come to sacrifice Himself so that we might have a way back to God.  A free gift that all we have to do is receive.  Jesus is the Magic of Christmas, and he touched me with a little of it this week.

May God touch you and your family this year with the Magic of Christmas.

Day 211. The Silent Symptom

It’s been a while since I’ve written for a couple of reasons.  One is that nothing much has changed physically.  My T cells are still low and my donor vs. my cell percentage are still at 60/40 in one area.  My doctor continues to reduce my Tacro, immunosuppressant, with the hope that it will encourage the donor cells to ramp up.  I have only have some very mild GVHD skin symptoms.  All in all, no change.

The real reason I haven't written is that I have developed a new symptom that no one likes to talk about.  Depression.  I didn’t believe it at first.  Then I tried to self talk myself out of it, pretend it wasn’t happening.  I have always been an upbeat, outgoing, independent, get a grip kind of gal.  I don’t get depressed!  And I don’t know what to do with myself now that I am.

I share this now because the purpose of this blog is not just for prayer support but to inform and prepare those who walk this road after me.  Just as I read and learned from others before me.  I have already heard from so many who have benefitted from our story.  It is important to tell this part too.

Chronic fatigue can cause depression.  The sheer length of recuperation downtime can cause depression.  The feeling of dependency, of not contributing, of feeling like you don't have a purpose can all lead to depression.  My doctor told me last week that over 50% of her transplant patients are on some sort of anti-depressant.  First you’re given a fatal diagnosis, then you spend months going through the rigors of transplant, then you spend months in quiet healing.  There is a lot of alone time with no productivity.  I am continually reminded that my job is to heal.

The fatigue leaves you too tired to do much.  There was a stretch when the fatigue was improving and my few chores were being accomplished easier.  I manage to do the laundry, grocery shopping, and the cooking.  (This came with time.)  But now the depression makes me have to talk myself through each step.  Depression makes you tired and not feel like doing the things that you know would make you feel better.  It’s a vicious cycle.  All you want to do is sleep, but sleep no longer comes.

So I try to focus on thankfulness.  I am thankful that God decided to save me.  I don’t know why he chose to let me live, but I am grateful that He did!  I am thankful for my donor.  I am thankful for my husband/caregiver.  He has been my strong, loving supporter through it all.  I am thankful for my doctor/medical team.  I am thankful for my mom and how she has cared for me throughout this year.  I am thankful for my cousins, aunts, friends who have taken me to my appointments.  I am thankful for the countless family and friends who have prayed and sent notes and cards of encouragement.  I am thankful for wonderful children and grandchildren who I love and adore and want to spend years of quality time with.  I am thankful for our place in the country where we can go and relax and do the things that bring so much pleasure.  

I have to believe that this is just another bump in the road.  Right now it feels huge and overwhelming.  I can’t see around it.  All I can do is believe that there will be a tomorrow when it will be better.  We’ve come this far.  We’ll make it through this as well.

6 Months. Looking Good.

This week was spent at MD Anderson undergoing my re-staging tests…bone marrow biopsy, CT Scan…all my favorites.  Yesterday, mom and I met with Dr. Shah for some preliminary test results.  The rest won’t be back until my next appointment in two weeks.

The good news is that my bone marrow biopsy shows no residual evidence of any leukemia!  We’re still waiting to see how my percentages of cells compared to my donors stack up.  And my white blood count is still low, but that is normal for someone who is in my shoes.  The good thing is that my neutrophils are normal so I don’t have to get neopogen shots.  Just the other aspects of the WBC are low.  My lungs are good.  My scans are normal. 

Plus, for whatever reason, probably someone’s prayer, my hair has stopped falling out like it was, and I can see little baby hair coming back in.  It’s still thin, but it looks better.  Thank you to whoever prayed.

The extra fluids that I have been getting from my twice weekly IV’s plus the water I’ve been drinking along with the reduction of Tacro have all worked together to reduce my headaches.  We have perhaps found a connection with hydration and the headaches.  Or maybe it was just the Tacro.  Either way, they’re better.  We are, however, going to start reducing the IV’s to once a week for now with the goal of cutting them out entirely, so we shall soon see.

The intestinal issues have improved drastically.  Again, everything seems better with the reduction of Tacro.  And they have taken me down one more this week.  So far so good with no uprising of GVHD. 

There is still much to do.  I still have to start getting my immunizations.  They have been waiting until I have enough T-cells.  I still get fatigued, but I am able to do more than I was.  I still need my body to grow and develop just like a baby grows and develops.  My cells are just six months old and still trying to figure things out.  I am finally gaining a little weight, so that tells me that my body does not have to work quite as hard as it was.

This has been a long six months.  But God has been faithful.  My family and friends have been faithful as well.  Thank you for your prayers and thoughts. 

Philippians 1:3-7

“I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.  And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.  It is right for me to feel this way about you all, because I hold you in my heart, for you are all partakers with me of grace…”