Our Journey, and So It Continues

When I first began my blog and chose the name “Our Journey,” we were at the beginning of a very new place in our lives. I had just been diagnosed with an ornery type of leukemia and we had many decisions and changes before us.

Four and a half years have passed since that fateful day. Much has happened in my health, in our lives, and in the lives of those around us. I still have cancer, but it’s manageable. What I have been thinking about, and what I would like to continue to write about, is the journey that we continue on. Not only us…but all of us. Because we are ALL on a journey. God gives us today! If He showed us a video clip of the next months and years of our lives, we would probably be paralyzed by the fear of moving forward. But He gives us strength for the day and hope for tomorrow. How He knows what is best for us!

Please continue to walk with me as I journey this life as a wife, mom, grandmother, cancer survivor, Christian, mentor, friend, and cheerleader for my husband’s and kids’ endeavors. There’s a lot to cover. I am praying that God continues to grant that precious commodity...time.



Great Is Thy Faithfulness
Thomas Chisholm – 1925

Great Is Thy faithfulness, O God my Father!
There is no shadow of turning with Thee;
Though changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.

Great Is Thy faithfulness,
 Great Is Thy faithfulness,
Morning by morning new mercies I see;
All I have needed Thy hand hath provided

Great is Thy Faithfulness, Lord unto me!


Summer and winter, and springtime and harvest,
Sun, moon, and stars in their courses above,
Join with all nature in manifold witness

To Thy great faithfulness, mercy, and love.

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow

Blessings all mine, with ten thousand beside!

The Crazy Cycle of Life

As a mother of two, step-mom of four, and having led a youth group for eighteen years, I know a LOT of young moms! I smiled to myself today as a sweet friend confessed to her Facebook family that one daughter was propped up in her big highchair enjoying her dinner, watching a video, while she was being able to get some work done. Other moms chimed in with their admissions of how they survive in their worlds. As always, my favorite was my very own daughter’s with my very own crazies. :)

(I have been lying in bed thinking about this and wondering why this relentless insomnia continues to besiege me certain nights and not others. So writing and warm milk seemed a better remedy.)

Earlier today, I had brunch with my friend and part of our conversation covered the wonderful unique craziness of each of our grandkids. I would venture to say that they are not that unique, but rather a sampling, our beautiful sampling, of the millions of kids throughout the world. Not much different than the ones we raised a few decades ago. Not much different than the ones you are raising now. Not much different than she and I. Every generation trying to accomplish the same thing…get their kids to eat and behave.

Besides my young friends, I also have numerous friends my age and older. There are many who are taking care of their elderly parents or ailing spouses. Many are fighting their own health battles. Some are dealing with joints that just don’t want to work anymore and have to be dealt with in one way or another. We deteriorate.

I remember back when I was in my late 30’s, maybe 40, and going like a crazy woman with the youth group, my kids, work, and everything else, my dad said “You’re not going to be able to keep this pace forever!” I remember laughing and telling him, “Of course, I will!” Wow! Did I ever eat those words!!

The cycle of life comes full circle. When you’re young, you somehow have the energy you need to keep up with these crazy kids and all that life asks of us. Later on, you start slowing down a bit, wondering how the time flew by so fast. Then before you know it, your daughter has you sitting down at a table trying to get you to take a bite and behave. Hopefully, you aren’t running around her house without your pants on! But payback can be really funny.

Not Alone…Deciding What’s Next

In the whirlwind of children’s birthday celebrations, I have been continuing on medications that have produced more side effects than solutions, gone back to MDA for another follow up where there was a great deal of “does THIS hurt?” and finally it was decided that it is not my joints screaming pain at me but rather my tendons. Ahhh! My tendons. Well, there you go. That make’s it loads easier!! :/ The doctor then stated, “No wonder nothing that’s been tried has been working!” Comforting!

He then decided that we would move forward with injections and that I would need to wean myself off the medication that has caused more harm than good. What was my name again??

I don’t know why I didn’t ask more questions while I was there. I am usually quite detailed that way. But lately, I have just been floating through life mentally and hobbling physically. My lower back, hips, and knees just don’t want to perform anymore…at least not without a considerable amount of pain. I have been doing water therapy/exercise since last summer. You’d think that if it were going to help it would have started by now. But I know it’s good for me, so I keep on going…even though the “old” ladies are often the ones who have to help ME get out of the pool! :/

After my appointment last week, Paul and I started trying to do some research regarding tendonitis, bursitis, etc. It mostly seemed to be related to overuse and sport injuries. That did not fit. After continued Googling, we found an article that sounded as if I had written it! It was posed as a question from a lady with cancer who had pain in several of her joints…hips, lower back, knees…. They had run every blood test, done every X-ray, MRI, CAT-scan, etc. (just like me). Nothing seemed to be wrong! They had tried a variety of medications. Nothing helped. She sounded desperate. SHE WANTED TO KNOW IF ANYONE ELSE HAD EXPERIENCED ANYTHING LIKE THIS???

YES!!!!! Oh, my word! We begin to feel like we are LOSING OUR MINDS! They throw words like “immunodisregulation” at us because I don’t think they really know what’s wrong. Chemo just screws us up…some of us more than others. But to hear that there are others out there actually going through the SAME THING is immensely encouraging, even if the doctors don’t know what or why it is.

So, tomorrow we’re going to give steroid injections into my tendons a try. OUCH! The doctor tried to explain that my joints were actually moving well but the surrounding supporters were what had given out. And tendons do not have blood flow, so they do not heal like the rest of your body. Healthy people can just rest for a couple weeks, do some rehab, and whalah! Mine has had eleven months and it just continues to get worse. He’s pretty sure that it is all damage from chemo. And since I am NOT “healthy people,” rest and rehab have not helped at all. So he is hoping that the steroids will provide 1) some relief and 2) jump start some healing. Here’s hoping!

I need it to work. I have another child’s birthday coming up!

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

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.

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.

Smile.

“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