July 29, 2014

It’s Always Something! :/

Many of you have been graciously asking for updates regarding my recent and ongoing doctor appointments.  This summer, it seems that we keep going from one thing to another, with grandchildren visits interspersed throughout.  I am thankful for the fun times with the kids!!

The last major trip down to MDA left us with the decision that we would wait until October before doing the next round of bone marrow biopsies, flow cytometry tests, CT’s, etc.  Well, that was before this nagging cough that I’ve had since last December got uncontrollable.  MDA had already sent me to all of their folks to check for the big stuff, so we had decided that it must just be allergies (which I did not have before the transplant).   :/  So I started on several allergy related meds, sprays, etc.  It seemed to help…for a while.  Then a few weeks ago, it came back with a vengeance that nothing would quiet! 

During this same period, after a weekend at the country, I acquired a weird rash.  Well, at first we thought I had major mosquito bites all swollen up, but it didn’t take long to figure out that wasn’t it!  Four days of insanely itchy whelps followed by red splotches jumping from one area to another finally got my attention and I made an appointment to go to an allergist and sent pictures to my docs at MDA.

Ahhh!  Prednisone!  Relief.  But he didn’t know what on earth was the cause.  It seemed to be heat related, but it was very “atypical.”  Then he gave me some wonderful nasal spray with an antihistamine in it and some cough medicine with codeine.  First night I’d slept in ages!! 

While this was all great, my docs at MDA were not happy.   They do NOT like rashes!!!  So Monday, even though I was cleared up for the time being, I went down for labs and a “viewing.”  Unfortunately, some of my lab numbers that I have had trouble with in the past were stirred up again.  Things that sound completely benign and silly compared to talking about cancer and the like. 

First, my Potassium serum count is up again.  It has done this many times over the months, now years.  Doesn’t sound like a big deal, but it has to do with your kidneys and can affect how your heart works.  So it’s kind of a big deal. 

Second, my Calcium serum count is up again.  This is a bigger deal.  I have already been to the endocrinologist at MDA and been tested and discovered that I have a goofed up parathyroid gland.  (Not the same as the regular thyroid gland.)  The parathyroid hormone regulates the amount of calcium in the blood and in the bones.  So my calcium is continuing to leach out into the bloodstream and not be absorbed into my bones, thus worsening my osteopenia/osteoporosis condition.  Long story short, they have been watching this number waiting to see if they are going to have to remove my parathyroid gland.  Looks like they probably will.  :/  The frustrating thing is that I have had my whole body rebuilt without being cut on, and now I’m going to have to have surgery because of this silly little gland.  Oh, well.

Next Monday, they want me to come back to see the GVHD doctor and the transplant dermatologist (who knows a whole lot more about rashes in transplant patients than the normal allergist or dermatologist!).  Plus, I have to re-do all my labs.  They are pretty sure that my rash is due to “immunodisregulation.”  Yeah, I don’t think it’s a word either, but it just means that even though my immune system is better than it was when I was right out of transplant, I will never, ever have a normal immune system again, and I will be prone to get weird stuff.

Then, instead of waiting until October, Dr. Shah wants to do another bone marrow biopsy, flow cytometry test (blood and bone), CT, chimerism %, etc. in August instead of waiting until October.  Sooooo, besides my granddaughter’s birthday, Paul’s birthday, great niece and nephew’s birthdays, trips to the country, still trying to figure out the details of Paul’s new job/insurance/retirement plans, projects to do now or later, and when to go back to Dallas so my daughter can catch a nap and a break from those three adorable little hooker dookers…August is going to be full.

So as I keep saying…one day, one prayer, one step at a time. 

I sure am glad the fatigue is better!!  :)

He Called!!

June 10.   My stem cell coordinator called today.  They finally made contact with my donor.  Rather he finally contacted them back saying it was ok to tell me who he is. So I'm about to send the letter I wrote over a year ago to Mr. Richard Maloney of Massachusetts!  Thank you for saving my life!! 

June 11.   He called me this morning!  He read my letter and my ENTIRE blog last night!  What an awesome conversation! It's like having a brand new old friend.

Richard is a mailman, father of two.  His girlfriend is a nurse.  His daughter works oversees with children.  His son is in the medical field in the NE as well.  He has only been to Texas while on a flight stopover in Dallas!  He was given many opportunities to change his mind after finding out that he was a perfect match for me, but he never did.  He kept going.

How do you thank a complete stranger for giving you a second chance at life?  Are there enough words?  Fortunately, stem cell donation does not require the same TOTAL commitment as organ donation!!  But it IS a commitment!  He had to take time off work, take certain meds, and undergo some uncomfortable days and recuperation time.  And he did that for a complete stranger with no idea of whether or not it would work. 

It did, Richard.  There have been a few hiccups, but it’s working.  This is about how long they would have given me without the transplant.  And I’m still here!!  I have seen another grandchild born.  Had another anniversary.  Spent time with family and friends.  And I have simply loved living every single day that God gives me. 

And that’s what I plan to continue doing.  One day, one prayer, one step at a time. 

Thank you, Richard.  Thank you for giving me back my life.

June 26, 2014

Summer Shockers

I’m not sure why I have waited this long to document the news and happenings of the past weeks.  I think perhaps that I needed some answers, some resolution, before I put it here.  Of course, everyone else already knows!  Family, friends, Facebook!!  Everyone has been praying and encouraging.  So I’m really not sure why I waited….

Early May.  I had been waiting for my call from Dr. Shah regarding my bone marrow biopsy (BMB) results.  I had already gotten a good report on my labs and CT for my two-year post stem-cell check up.  I missed her call on Friday, May 9, while at the grocery store.  She had left a message asking for a good time to call back.  Her message seemed odd to me.  If everything had been ok, she would have just left a message saying so….  Hmmm.  It was Mother’s Day weekend, and we were busy with family.  I didn’t mention the phone call.

Monday afternoon, May 12, Dr. Shah called with results that none of us were expecting.  Minimal Residual Disease (MRD).  And my donor cell count had reduced back to 96% from the 100% it had achieved.   It doesn’t sound horrible where you may be sitting, but it was not good news.  As the eternal optimist, Dr. Shah scheduled another biopsy to rule out a false positive and/or check for possible growth.

Almost immediately, Paul went back into research mode, but there just wasn’t enough information for anything conclusive.  We would just have to wait.

Three days later, on May 15, after 21 years with the company, Paul lost his job.  Out of the blue, unmerited, managed out.  Well, that’s one way to get your mind off cancer!  They not only took his job, but our health and life insurance, his truck, his phone, his retirement plan….  He had been completely devoted and dedicated to his company.  This was more than just losing a job.  It was like losing a part of him. 

The one highlight of the last few weeks was our fourth anniversary.  This was Paul’s year to plan, so of course it was already paid for.  :)  We first spent time in Fredericksburg, got rained out of Cascade Caverns again, climbed Enchanted Rock, visited some old and new wineries, and then came the surprise…Cypress Valley Canopy Tours.  We stayed in a tree house in the woods!  There was a beautiful private bathhouse with a rock waterfall spa across the bridge.  The next morning, we enjoyed the zip-line tour on the property.  Amazing.  It was wonderful to put all our concerns aside for a few days and just enjoy each other.

June 11 was my follow up bone marrow biopsy.  June 12, Paul accepted a position with Graco Mechanical, working for his best friend.  How cool is that?  They have been in the same field for all these years but never had the opportunity to work together.  Paul is looking forward to working in a more positive environment.  There are some concerns regarding such a big change in our insurance, etc., but God is bigger than insurance! 

June 18, I got my call from Dr. Shah with the results from my follow up BMB.  The good news was that the abnormal cells (MRD) had not increased.  The bad news was that it had not been a false positive as was hoped.  The leukemia is trying to inch back slowly.  She did not have the results of my chimerism test (donor %), so we would have to continue to wait on that.  If the % continues to fall, then action will most likely have to be taken…such as a donor lymphocyte infusion (DLI).  It’s like a stem cell booster.

Dr. Shah is consulting with my leukemia doctor, Dr. O’Brien, to determine the ongoing course of action.  She feels like a less invasive course is best for now.  That would include regular blood draws to check CBC counts and flow cytometry via blood instead of bone marrow.  I have an appointment to see Dr. O’Brien on June 30 and am scheduled for another BMB in October. 

We were able to take an additional week off before Paul started his new job and go back to the country for several days.  My daughter and her family came for four of them, and we had a family get together for my brother’s birthday.  I love our time in our little slice of heaven, and I love sharing it with the people dear to me!
June 26.  I got word from Dr. Shah this morning that my chimerism results (donor %) came back at 97%!!  That's UP a % from last month!!  Thank you, God!!!  They still want me to meet with Dr. O'Brien, my leukemia doctor, on Monday to re-do my labs and set up a new follow up schedule.  But for now, as far as I understand, I do not have to proceed with a DLI or any other procedures.  Thank you, thank you, thank you to all who continue to pray for me!!!

The past couple months have felt like an emotional roller coaster, but God has continued to ride it with us!  What a difference that makes!!!

Romans 8:31  “What, then, shall we say in response to these things?  If God is for us, who can be against us?”

April 14, 2014

What’s Your Resurrection?

As we have begun to prepare our hearts and minds this week, first with the celebration of Palm Sunday and continuing with the remembrances of Passover, Good Friday, and Resurrection Sunday…or Easter…my thoughts turn to how He has brought me and so many others back to life.  It’s amazing how surviving a thing like cancer can make you stop and realize how many things He has already saved us from!  We just don’t always take the time to think about it.

2 Corinthians 1:10  He has rescued us from a terrible death, and He will continue to rescue us.  Yes, He is the one on whom we have set our hope, and He will rescue us again.”

Colossians 1:13  God has freed us from the power of darkness, and He brought us into the kingdom of His dear Son.”

2 Timothy 1:9  He saved us and called us with a holy calling, not according to our own accomplishments, but according to His own purpose and the grace that was given to us in the Messiah Jesus before time began.”

Over the centuries, God rescued His people countless times.  He rescued them from slavery in Egypt.  He rescued them from numerous enemies and afflictions.  And time and again, they turned back to their own ways.  We read those stories and wonder how they could have been so dumb!  Yet we do the same things…just sometimes with a bit more sophistication or secrecy.  We don’t all get together and build a big idol because our leader didn’t make it back down the mountain in time; but we do have our idols…things that we can touch and see and put ahead of our Lord. 

What has Christ saved you from?  What has He saved you to?

Romans 6:4  We were therefore buried with Him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.”

Romans 13:11-12  Do this, knowing the time, that it is already the hour for you to awaken from sleep; for now salvation is nearer to us than when we first believed.  The night is almost gone, and the day is near.  Therefore let us lay aside the deeds of darkness and put on the armor of light.”

Ephesians 5:14  For this reason it says, "Awake, sleeper, and arise from the dead, and Christ will shine on you."

Blessed Easter week!


February 4, 2014

World Cancer Day - He's Not Done With Me Yet!

"Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things are become new."  2 Corinthians 5:17

Today is +644 days since my transplant.  It is also the day the world shines a light on cancer... celebrates survivors, mourns the lost, and focuses on the need for continued research.  It has occurred to me recently that this is about how long I would have had to live without my transplant.  Instead, I am in remission, regaining strength and energy, and about to witness the birth of my fourth grandchild.  Amazing!

I chose the verse above because I AM a new creature!  So many things have become new!  But this isn't just because of the transplant.  I think of what my life would have been like without God.  I think of what my choices would have been like without the guidance of the Holy Spirit.  I made enough mistakes as it was!  I have spent quite a bit of time lately looking at the choices of this world, and it is quite saddening.  I look at what our society finds appealing, and I find it appalling.  I am not ashamed or afraid to walk a road less travelled.  It was what I was taught, and after a lifetime of comparing the alternatives, it is what I choose.  

I wish I could just implant this knowledge to others, but it seems that all I can do is continue to live and speak the same tune.  Maybe that's why God gave me these +644 days and counting.  I guess He's not done with me yet.

October 29, 2013

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!

October 1, 2013

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.”