Home Sweet Home

The wonderful news is mom is back home right now. She is sleeping in her own bed and eating actual food!

The other news is that tests confirmed our battle is indeed against Cholangiocarcinoma. This is a rare cancer, affecting only 2 in 100,000, that begins in the bile duct.

We are still in wait mode as far as coming up with a plan of attack. While the surgeon here in Tulsa does not think surgery is an option, there is another surgeon in OKC that specializes in these types of surgeries and mom's oncologist has referred her to him.

After that appointment we will know more.

Mom is feeling well, aside from the pain in her side. She still has two tubes draining her liver and gall bladder and apparently having tubes going through your side and into two different internal organs can cause some discomfort. Who knew?

The immediate prayer at this time (besides a complete healing causing the doctors to be baffled and bewildered because what was once there is now gone) is for the surgeon in OKC to be able to remove it surgically.

We appreciate your prayers, that are literally coming from all over the world, and we can feel them.

I'll let you know when the appointment is in OKC so you can be praying then as well!

In which we wait....

We were really hoping to have some news on the biopsy today. But alas, the doctors are still studying it. They want to be thorough. They want to get it right, and we appreciate that.. but waiting is hard.

We are waiting to find out if the cancer started in the gall bladder or the liver.

We are waiting to find out if it is truly inoperable.

We are waiting to find out if it is cancer at all, or perhaps just inflammation.

The one thing we do know is all the liver function tests are back to normal.

We know that Mom needs to move and breath deeply, despite the fact that she has two tubes coming out of her side that cause some discomfort. And I use the term "discomfort" in the same way one would describe the French guillotine as causing a slight pain in the neck.

Mom also needs to eat, despite the fact that she's in the hospital, being served hospital food. And I use the term "food" in the same way.... well, you get the idea.

We may get biopsy results back tomorrow, but then again it may be Wednesday.

Until then we wait.

We wait for the report.

We wait for the treatment plan.

We wait for more tests.

We wait for tubes to come out.

We wait for Mom and Dad to get to go back to their home.

But mostly, we wait upon the Lord.

...those that wait upon Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not grow weary, they shall walk and not faint. ~ Isaiah 40:31

Dance

I wrote this for a writing contest a few weeks ago. The theme asked the question, "When did you first understand what love was?" Unfortunately, due to a crazy schedule I didn't make the deadline for the contest, but this was so in my heart I had to write it anyway. Those that read it told me that there was another place for it. Here, on this day, is the place for it. Because the dance continues.. and will continue, despite the music...

They were teenagers in the 50’s, the decade of sock hops and dance marathons. They married and started their family in the 60’s, the decade of dancing to the beat of your own drum. They have probably danced hundreds of thousands of dances together, but it was one dance that caught my heart. It was one dance that showed me what love was.

I don’t remember mom and dad being terribly demonstrative when I was growing up. I take that back, Daddy was. I remember vividly the whoosh of his recliner as it returned to its upright position. I remember him displaying his most exaggerated pucker lips as he left his chair and crawled on his hands and knees to where my mom was napping on the couch. He would smooch the air, until she woke up, took one look at him, and playfully demanded that he leave her alone. He was comically flirty, she fittingly coy. And this was their dance.

` They knew each other so well, they could anticipate each other’s steps. Mom instinctively knew just how Daddy would lead, and she would follow. They danced through life, having children, watching them grow and giving them up to new dance partners. Grandchildren came and with them came even more dancing - Goofy grandparent dancing. Their music was the joys of life. Sometimes the beat was slow and steady… sometimes a bit frantic and overwhelming but they always danced with grace no matter what life’s soundtrack brought.

To tell the truth I never really caught on that their life, their love was a dance. It wasn’t until a new more sinister beat began to echo. My dad heard it first. The doctor told him it was prostate cancer that had spread to the bone. The pain was unimaginable, and it stilled him for a bit. Mom put all her energy into taking care of him and it worked. He was soon crawling across the floor to the couch where she lay resting; blowing exaggerated kisses until she woke up and the dancing began again.

But just like a bad song on the radio, the sinister music hadn’t played out. And this time my mom was caught up in the beat. Multiple Myeloma brought more unimaginable pain. And it was then that I began to understand the dance.

Mom was truly in so much pain that she could hardly breathe, let alone move, but she had to move. As she stood up, pain hit her body so hard she couldn’t go anymore. She stood there weeping, unable to take another step and unable to sit back down. Daddy wrapped his arms around her. I thought he was simply going to help her get moving again, but he just stood there holding her. And after a few minutes, I realized he wasn’t just holding her… he was swaying with her. She relaxed and followed his lead. For several minutes they danced to some sweet melody that only they could hear. He had danced this dance before.. He knew the pain. And he was taking the lead now, holding her tight and not allowing death to cut in. He knew there was more dancing to be done and he was not willing to give up his dance partner.

I cherish the memory of this moment, and I thank God that I got to witness it. It was true love and true romance and true fight, this love that dances no matter the music.

Here we go again....

Well, it's been over a year since I wrote what I had hoped would be the final post on this blog. Unfortunately, we have discovered that while mom may have bested Multiple Myeloma, another contender has stepped into the ring, trying to have a go at her..

Here's the latest news in a nutshell...

Sunday afternoon, mom and I had planned to go shopping, but I received a call from dad saying that she wasn't feeling well and had decided to go get checked out at our local ER. Mom has been doing really well since the days of MM, so her not feeling well kind of threw me. Mom just doesn't get sick.. and when she does, it's a doozy.

Still ,we weren't too worried as all her symptoms seemed to point to gall bladder issues. You must understand that the war between our family and gall bladders is legendary. The gall bladders attack each of us one by one, taking us down in a storm of pain and belching... but we rise victorious. We just find a nice friendly doctor and ask that the gall bladder be removed far from our bodies to be stored in some glass jar at some remote medical facility never to hurt us again. In fact, Mom and Mike are the only ones who still have their gall bladders. The gall bladder battle is so insidious that it crosses blood lines and even attacks family by marriage. My sister in law is fighting her own gall bladder even as I write this.

So my point is, gall bladder, not such a big deal.. We've all been there, done that!

And yet, mom's gall bladder seemed to not be so simple. The battle lines there were just not quite as clear, so it was decided that further investigation would be necessary and our little local ER moved mom to the big city hospital across town.

Still, we weren't too fazed. We were certain we could deal with any gall bladder issue.. We had experience on our side.

The big city hospital put mom on the oncology floor.. you know, the one reserved for cancer patients. I was almost thrown at this point, but mom offered that this was simply a precaution due to her history with MM and she actually appreciated it. I bought this explanation and pushed away any creeping anxiety.

Monday came and tests were performed. Unfortunately, the big test, the deciding test, the test that would change our little world as we knew it was ordered wrong and we had to wait until Tuesday to take the test and hear the results.

My brother, Mark, was with mom and dad when they got the results and he began the task of informing us. I am grateful that he called my husband Jim first, instead of me. Jim came to where I was working and was with me when I learned the news.

Cancer had returned.

But it wasn't the same cancer. Multiple Myeloma is still being held at bay. This was a new enemy. Cholangio Carcinoma.

A tumor was growing around the bile duct and eventually completely blocked it, causing mom's liver to quit functioning properly. This was causing her symptoms and dealing with this blockage became the priority.

On Wednesday, mom, who by now had taken on the hue of BigBird, underwent a procedure that completely and successfully unblocked her bile duct. Her liver could now do it's job! Not only is the duct draining into the small bowel as is it's job, but mom is sporting a new accessory bag where her liver is draining from her side. This is just temporary, but it's needed to get everything back in order.

The doctor's chose not to do a biopsy of the tumor during this procedure because they didn't want to traumatize the liver more than necessary. Instead she will have the biopsy tomorrow and get a matching tube and bag for her gall bladder.

This morning, she was all pink again and feeling better. Her bilirubin levels were normal, which is glorious word when dealing with what we are dealing with. The immediate danger has passed, but we still have the rest of that nasty tumor to deal with.

The biopsy tomorrow will confirm the Cholangio Carcinoma diagnosis and I'm praying it doesn't. But no matter what... mom says God is in control and together they beat Multiple Myeloma..and that same power, that same grace is still with her. I have no doubt that this new contender will be knocked out in the first round!