January 6, 2016

Just Another Day at MDA

Yesterday was my first visit to MDA for 2016. As I filled out my new planner for the year, I went through last year’s to transfer birthdays and such. Just out of curiosity, I counted how many times I went to MD Anderson in 2015. 52. An average of once a week. While I’ll often go several times in one week and then not again for a few, it was still quite a number…and that didn’t include physical therapy. I am optimistic that the number this year will be lower…due to less being wrong. But that is not the reason I am writing….

I have mentioned before that I always try to be a blessing in some small way to someone at MDA. I know what it’s like to be there, to be afraid, to have questions. Yesterday was no different. After my labs, I stopped in to the Stem Cell department to say hi to the ladies at the front desk. I knew that the main gal had been due to deliver her first baby in late December so I wanted to check and see if she had a safe delivery. A woman wearing a mask and who had lost all her hair was checking in, so I was waiting until she was done. While she was waiting for her paperwork, I asked if she was getting ready for a stem cell transplant and she said that she had just had one. She was 25 days out. She asked about me, and I told her that I was 3.5 years out. She just looked at me with my head full of hair and asked if I had any ongoing issues. I gently told her that there were a few, that everyone was different, but that it was worth every bit. The first year was the roughest. Drink, rest, walk, and keep believing. I remember those first months and how encouraging it was to see and talk to someone who had made it a little further down the road. Sometimes in life, we just need to open up and share with someone. You never know how it may effect them in that moment.

Later, I was getting on the elevator to go to my car, and an older gentleman allowed me to go first. He smiled at me and asked if I was a patient. I told him I was. He asked what I had and I told him Leukemia and that I’d had a stem cell transplant. He said that he had Multiple Myeloma and was about to have his second transplant. He had his first four years ago, just before mine. We discovered that we had the same doctor and the same team…. God, MDA, and Dr. Shah. ☺ He said that his numbers had “flat lined” for a while, and I laughed and said that wasn’t a term that I would particularly like to use in our cases! ☺ His crept back like mine did, but to a greater degree, and he now is going to need to go through the process again. He then said, “You are a beautiful lady; may I give you a kiss?!” What could I say?! “Sure!” I said with a grin. He sweetly kissed me on the cheek, stepped off the elevator on his floor, and wished me well. I’m not sure who blessed who this time. I forgot to ask him name. I’ll have to ask Dr. Shah so I can pray for him by name. What a dear.

Which brings me to my final thoughts. Many of you have asked me how I am, where things stand for me. In many ways, I have been wondering the same thing. They have been running dozens of tests trying to figure out the pain issues, which was why I was there yesterday. In a nutshell, my cancer is stable. For most of the past year, it has stayed in the 2-3% range. As long as it stays low like that, they will just leave it alone. My donor percentage has stayed around 95%. As long as it stays up there, they again will just leave it alone. So that is the prayer request regarding the leukemia…stay low. Donor cells stay up. Negative markers such as 17p deletion…do not come back.

With regard to my joint pain, they have no clue. All the tests have come back negative. They fall back on their favorite words for me like “immunodisregulation” and they have mentioned fibromyalgia. Whatever. They give me drugs, then they say that they really don’t want me on them long term. I go to the Pain Mgmt doctor tomorrow to see if he has any other bright ideas. Other than that, I am starting back to my exercise routine next week. Pray that I can get back at it and not croak!

Here’s to 2016! Health and blessings to you all. Seize the day!

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”
Phillippians 3:12-14

October 20, 2015

Keep Walking

This morning during my quiet time, just a couple days after the annual LLS Light the Night Walk, my devotional encouraged me to not be anxious about the weakness of my body. Rather consider the aging process as the opportunity to continue growing stronger in the Lord.

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
Psalms 139:14

This year, the LLS Walk was my most difficult to complete. My knees, my joints, despite the months of physical therapy, are just not holding up. My stamina is minimal. But…I will keep on walking. God continues to hold me up, and I will continue to lift Him up.

“But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin.”
1 John 1:7

“…Love the Lord your God, walk in all his ways, obey his commands, hold fast to him and serve him with all your heart and all your soul.”
Joshua 22:5b

“Blessed is the man who does not walk in the counsel of the wicked
or stand in the way of sinners or sit in the seat of mockers.
But his delight is in the law of the Lord,
And on his law he meditates day and night.”
Psalm 1:1-2

“Blessed are those who have learned to acclaim you,
who walk in the light of your presence, O Lord.”
Psalm 89:15

“My son, keep your father’s command and do not forsake your
mother’s teaching. Bind them upon your heart forever;
fasten them around your neck. When you walk, they will guide you;
when you sleep, they will watch over you;
when you awake, they will speak to you.
For these commands are a lamp, and the corrections of discipline
are the way to life.”
Proverbs 6:20-23

“This is what the Lord says: ‘Stand at the crossroads and look;
ask for the ancient paths, ask where the good way is, and walk in it,
and you will find rest for your souls’….”
Jeremiah 6:16

“He has showed you, O man, what is good. And what does the Lord
require of you? To act justly and to love mercy
and to walk humbly with your God.”
Micah 6:8

“When Jesus spoke again to the people, he said,
‘I am the light of the world. Whoever follows me will never walk
in darkness, but will have the light of life’.”
John 8:12

“And this is love: that we walk in obedience to his command. As you have heard from the beginning, his command is that you walk in love.”
2 John v6

This past weekend, many of us either walked or ran to raise research money and awareness toward the ongoing killer of blood cancers. Everyday leukemia, lymphoma and other forms of blood cancers are claiming lives, young and old. Our prayer is that these funds will help researchers find the cure.

But how is our daily walk raising awareness for the ultimate death? What does our walk say about what we believe? Cancer or no cancer, all our days are numbered. We need to make them count. Those of us who know the Answer, know the Cure. Let us not waste our days. Walk with purpose. Walk in obedience. Walk in love.

Walk for Him.

September 28, 2015

What is YOUR Wellness Quotient?

This morning while I was watching the news, they were talking about how folks could minimize their health risks for many diseases such as cancers, heart disease, diabetes, etc. by simply eating a more healthy diet and by exercising. They also mentioned including stress reducing activities such as yoga, meditation, and again exercise, as stress is another primary factor in many of these diseases. In fact, they mentioned that the mayor was making today a special day to focus on these health-based, life-improving, possibly life-saving, topics. How nice of her.

(On a side note, my most recent bone marrow biopsy and genetic testing came back about the same as it has been. I still have minimal residual CLL with no 17p deletion. So in a nutshell, I have very small leukemia, growing at a very slow rate. We’ll take that for now.)

This morning’s news topic caught my interest because besides a healthy lifestyle, they also talked about attitude and how important it is to stay positive. I have personally walked the walk of medical depression after my stem cell transplant and I know how difficult it is to crawl out of that hole. This morning after my aquatic class, I was talking with a sweet lady whose husband has COPD, and a host of other health issues, and has basically given up. It is very discouraging to her and she does not know how to help him. It is almost impossible to help someone who doesn’t want to help himself. That is one area where I am so proud of my mom. Even during the past week after she fell, even through the pain, she never gives up. She keeps going, sometimes to my chagrin. She’s a fighter. I’ll take that.

I’m also proud of my daughter, Bethany. She has been fighting her weight for years and has finally gotten the upper hand. She is at 40 lbs and counting and looks and feels amazing. She is a great wife, mom, daughter, friend, baker, and entrepreneur. When you decide to make a change in your life, BAM! That’s when it happens.

I have another friend, Deena, who has been training to run in the October LLS run in San Francisco to raise money for Leukemia, Lymphoma, and other blood cancers. Besides being a childhood cancer survivor herself, she is running for so many others of us in her life and others she doesn’t even know. It’s hard. I can see it. But I know beyond a shadow of a doubt that it will be so worth it.

“I discipline my body and make it my slave so that after all this, after I have brought the gospel to others, I will still be qualified to win the prize.”
1 Corinthians 9:27

“Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us.”
Hebrews 12:1

I know that throughout these past four years, we could have chosen frustration, we could have chosen fear, or we could have chosen joy. Through the grace of God, even though there have been times of frustration and fear, we chose joy. Everyone has their own journey, their own potholes, detours, road construction, and occasional wrecks. The goal is to keep the Light on your road and stay pointed in the right direction!

None of us have any guarantees for our tomorrows. Choosing a healthier diet and exercise makes good sense. A positive attitude makes you, and everyone around you, happier. God has already numbered our days. It’s up to you to make them count.

Be fit. Eat right. Think well.

Love Him. Love others.


September 10, 2015

“Fit for Life”

I need to start with two points. First, it is very difficult to find a title with the word “fit” in it that hasn’t already been used! Wow! Second, I am humbled and honored that folks still want to hear from me. I received an email yesterday from someone I do not know, but who follows my blog, asking for an update. Since I just had my bone marrow biopsy yesterday, I won’t have the results back for a week or so. And my labs revealed that my red blood cells have not recovered since my last chemo. It has now been six months…plenty of time. So they took some additional blood to run further tests along those lines. They may want to do a colonoscopy. ☹ More on that next week.

For now, I will share the importance of fitness and exercise throughout the cancer/stem cell journey. First of all, it’s hard! It’s hard when you’re healthy!! It’s compounded when you have cancer or have gone through some sort of treatment. At least, it has been for me. The fatigue that often accompanies cancer is not a good partner with exercise. But if you yield completely to the fatigue, it will overtake you and only get worse. You must move.

While I was in the hospital for my stem cell transplant, there were regular “exercise” classes that we were encouraged to attend. It was mainly to promote movement and help regain (or not continue to lose) strength. Once home, it was much more difficult to continue the routine on my own. I was fairly consistent with my stretching, but my strength was waning.

After the CAR T-Cell trial, my joints felt as if I had been run over by a CAR! After trying a shot in one knee that didn’t last for long, the doctor prescribed physical therapy including aquatic therapy. After two sessions per week for eight weeks, I was just beginning to feel a measure of improvement. They had also given me exercises to do at home, which I did fairly well. I wanted very much to feel better, to get stronger!! With my sessions coming to an end, the PT suggested that I join a gym, remembering to use all that I had learned. And so I did.

As most folks who know me well will attest, I don’t do anything half way. I jump in with both feet. The same has held true with my gym membership. For the first three weeks, I went every weekday, alternating between the aquatic class and the circuit training machines and bike. I have pushed myself as far as I am able. Many of you heavy hitters would grin at the light weight levels I’m on, but it’s all I can handle right now. And I’ve already seen improvement in some areas. My sweet hubby thinks I may be overdoing it a bit and suggested that I take a day off during the week. ☺ But right now, I feel like this is my job…to work at getting my body strong enough to handle whatever gets thrown at it next. And strong enough to enjoy the life and people I love! (I am having to take a short break after this BMB, however.)

I chose the title “Fit for Life” for two reasons. One, I have to be mindful of my body (how I care for it, what I put in it) to help prolong my life. We all do. Some of us are just a bit more reminded of it on a daily basis. Two, I read the book “Fit for Life” probably 35 years ago when I was in college and have tried to base my eating lifestyle primarily on their principles. It has worked well for me…except for the whole leukemia thing! ☺

While I get frustrated with my slow progress in the gym, I am proud of myself for going. I am also very proud of my sweet friend and childhood cancer survivor, Deena, who is training for the big LLS run in October. She is so strong. She has come so far. She is an inspiration to me to keep fighting, keep moving forward, keep believing, keep expecting just a little more of myself because one day, God willing, I’ll not only be able to bend down again, I’ll be able to run! Well, maybe just walk really well. ☺

“Therefore, having so vast a cloud of witnesses surrounding us,
and throwing off everything that hinders us
and especially the sin that so easily entangles us,
let us keep running with endurance the race set before us.”
Hebrews 12:1

July 24, 2015

Results and Questions

This past week, I got the results to my restaging tests. I appreciate all the prayers and wanted to pass along the news. The PET and CT scans were both clear, except for one little spot that supposedly has been there for eight months and isn’t doing anything. The areas under my arms and in my groin area that have been sore are attributed to the inflammation that goes along with the joint issue. My labs look fine. A few things are still a little low, but I’ve been that way for a long time, so no big deal. It just means that I still have a weak immune system. The test that took the longest to get back revealed that my abnormal cells have increased slightly, but they are still in the minimal range. And my donor cells are holding in there at 95%. Whew! So we will continue to watch and wait. Fortunately, my doctor watches very closely!!

While I am very thankful for these results, it is difficult right now to understand…. WHY? Why am I given more time, more weeks, months, maybe even years with my family when others who have walked similar walks are not? I know as a believer that these are not questions that I will find answers to on this side of heaven. I know that God has numbered our days from the beginning.

“Your eyes saw my unformed body; all the days ordained for me
were written in your book before one of them came to be.”
Psalm 139:16

I walked through the first phase of my cancer journey with a friend who had SLL, a sister cancer. He had the same care, the same belief, the same support, but not the same outcome. Now another dear friend, who we had the privilege of mentoring through his stem cell transplant, is at the end of his fight. It feels like part of me goes with each of them. But God’s Word assures that their days were ordained. Cancer was not in ultimate control.

So what would God have me to do since He’s keeping me here? Well, there are a few things that we’ve thought of. First, I intend to enjoy this sweet man of mine. Second, I hope to spend as much time with these six grandchildren as we possibly can. Third, I would like to keep paying it forward. Paul and I both feel that we have been given this opportunity to share and encourage others in their cancer walk. Every time I’m at MDA, I end up talking to someone who is new to the journey. Maybe it’s time for me to go there for more than just appointments. Maybe I can help answer someone else’s hard questions.

For now, I will say thank you to my Lord, my doctors, my caregiver husband, and my prayer supporters for getting me this far. I can’t say that I understand, but I can say that I’m thankful.

“Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.”
Lamentations 3:21-23

July 8, 2015

"It’s Just Hair” and Another Round of Restaging Tests

You’d think I’d have the hang of this by now. This is not my first rodeo. I know all the right words to tell myself and others going through this. “It’s just hair.” “It’ll grow back.” “It beats the alternative!” But it doesn’t change that feeling you have when you look at yourself in the mirror day after day. It’s hard. That’s all there is to it. I don’t look the way I used to.

For whatever reason, I never lose all my hair like most other cancer/chemo patients. Not to downplay the difficulty of that road, I almost think it would be easier to just get it over with than the months of handfuls of hair falling out, watching it get thinner and thinner. I had a ton of hair to start with, so people don’t notice the results of mine quickly. It took about three months of daily hair loss to finally get to the point where I just couldn’t do anything with it. Plus, I turn another shade of gray with every treatment. ☹ And with both comes a texture change. Still I try to remind myself, “It’s just hair.”

It grew back last time, eventually. I know with reasonable confidence that it will grow back again this time. But even if it doesn’t, I am still alive! I have a friend who is battling GVHD right now, and I’m worried about my hair! That brings it back into perspective! But we all have our own fight, and I am still fighting to get back into remission, which brings me to part two.

Yesterday, I had labs, PET and CT scans. Today I meet with Dr. Shah and then get my bone marrow biopsy to complete my “re-staging.” That means they will see what stage my cancer is and how I’m doing overall. I have been having some pain under my arms, in the lymph area, so they are mildly concerned about that. They continue to be SO diligent in my care. I am incredibly blessed to have this team of doctors by my side.

We are so thankful for your continued prayers on our behalf. We thank God for each day and suck the marrow out of each day He gives us! Cancer changes your perspective. I have met numerous people out and about who comment on how joyful I seem. Life is too short to let the little things rob you of your joy.

Choose joy.

“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13

June 15, 2015

Heritage: The Women in My Life

With the birth of yet another grandchild, I have been thinking of the rich heritage I have been blessed with as a woman. Girls don’t just wake up one day and instinctively know everything there is to know about being a mom and homemaker. They observe it over decades of formative years, watching their mother, grandmothers, aunts, great-aunts…. Well, they do if they are fortunate enough to come from a family like mine.

As I was thinking back about the influence of the women in my family, I first thought of my mom and her steadfast dedication to a near perfect home! It was neat, clean, and organized; we had three homemade meals per day, plus desserts. We were taught how to help and be a part of the daily chores. Mother ironed everything!! It took me a while after I was grown to loosen up on some of those practices. ☺ But the thing I remember besides learning how to DO everything, was just being with my mom…talking about any and everything while we did what we needed to do.

My grandmother, Mamie, could do it all and never really seemed stressed. She always had a full course meal on the stove, even when she wasn’t expecting company! Someone would always drop by, and there would be plenty to eat. She was warm and loving, did not know a stranger, took care of everyone, and mowed her own lawn up until her early 80’s. She was tough and soft all at the same time. I loved sitting on the front steps with her and shelling peas or standing in the kitchen drying dishes while she washed. It makes me cry just remembering those times.

Every one of my aunts had their own influence on my life as well. Some were quiet and sweet wives and mothers who lovingly cared for their families. Others were talkers, like me, and made me laugh and see the lighter side of life even when things were hard. Several worked outside the home and still managed to balance home and family. One enjoyed sharing with me her love of all things beautiful. Another enjoyed sharing the outdoors, the love of plants, and family history.

As I think about all these women and then about the women they produced, I am humbled and grateful. My cousins and I are all so very much alike because we were wrought by the same women. My daughter and her generation of cousins are following in the same steps because of the same. What a beautiful heritage.

Thank you Mamie, Mother, Aunt Maydene, Aunt Essie, Aunt Polly, Aunt Dottie, and countless other aunts, great-aunts, and “aunts” from church who have invested in my life. I love you all more than I can ever say. I hope this at least says a little.

“She opens her mouth in wisdom, and the teaching of kindness is on her tongue.”
Proverbs 31:26