July 21, 2016

Camelot Fallen…A Novel in Review

“You’re wrong, Mordred,” the king bellowed, the tip of his shining sword resting against his enemy’s throat, “You’ve always been wrong. Honor, forgiveness, and compassion are not signs of failure or weakness; rather, such acts of love should be the standards against which true strength is measured. Selfishness is easy. Hatred is easy. But mercy? Hope? A man sacrificing his pride or even his life on behalf of another? There is nothing more powerful in this world or the next.”


It’s not often that a written work contains so many elements of humanity coupled with other worldly spirituality. This story encompasses every emotion, taking the reader through in-depth character development, the joy and struggles of relationship, the growth and bond of friendship, the love of king and country, the battle between good and evil, between friend and foe, the seen and the unseen, and within oneself. The imagery and allegories woven into the fabric of the story often left me breathless or brought me to tears.

Camelot Fallen has taken the story of King Arthur, his knights, and his queen and rendered a far more complete telling, while incorporating the elements of forgiveness and redemption. I was moved beyond words. Now, back to page one!


Available on Amazon.com



July 11, 2016

Taking It As It Comes

Today was an emotional day at MDA. I didn’t receive any bad news or have to make any life altering decisions. It was just raw. Reminders of my reality.

I had labs and a follow-up to check on my thyroid numbers since I’ve switched to the Armour Thyroid. Everything looks great, and I am not having any apparent side effects. Of course, I still have some of my old side effects such as my knee issues, one of which was operated on last week, so I can’t say that switching thyroid meds made that any better. :/ I am pretty convinced at this point that my T-Cells did a number on my joints, which perhaps already had a hereditary inclination toward deterioration. (For those who haven’t heard that report, the orthopedist is pessimistic about my knees and thinks I will end up with a double replacement. Oh, well. Maybe new ones will work better!)

The PA visited with me quite a while before my internist came in. This is one of my favorite teams. Very caring. While the PA updated all my info for the new computer system and asked all the pertinent questions, she could tell that there were a few things heavy on my mind. One was my weight. Before cancer, and for the thirty years before that, I had basically weighed the same amount, sometimes even less due to stress or whatever it was. After the stem cell transplant, I lost down even more. Then the transplant drop-kicked me into speed-menopause. My hormones were completely off. When I finally started getting stronger after the transplant, I started gaining…and gaining. Some was good. I needed it. Then they removed my parathyroid because of a lack of calcium absorption, which then made me hypothyroid and they started me on Synthroid. A month later came the CAR T-Cell Trial and my joints started going south, and the weight kept coming.

Every time I’d go to the doctor, I would ask them about the weight gain and they would just say, “You look great!” or “You are getting older, you know.” :/ And I would answer, “I’m only a year older than I was last year!” Or “I liked the way I looked fifteen pounds ago!” Or “Well, you’re not the one having to buy new clothes!” Still no answers. They just said to embrace the new weight. So that’s what I’ve been trying to do.

But I asked again today thinking it might have something to do with the thyroid thing, but I got the same answers. And, of course, with my knees being out of sorts for over a year now, I have not gotten the kind of exercise I used to. So maybe if I end up with new knees, I’ll end up with my old waist! Or maybe not. My wardrobe style has changed. I am getting more comfortable with my new shape. Not comfortable in that I don’t want to work on it, but comfortable in that it’s not what makes me who I am. And my sweetheart still thinks I’m beautiful. I sure do love him!

The other thing that my PA mentioned was how good I look compared to other stem cell patients. Thankful. And good timing! We talked about what might make that so. The grace of God was the first thing that came to mind. The second thing was simply doing what the doctors said and having an amazing caregiver to make sure I did! We talked about the various other patients she sees and how many started out unhealthy to begin with, young or old. I started out healthy…non-smoker, no drugs, not a big drinker, healthy eater, healthy weight. I had a lot going for me at the start. Supposedly that can help.

Next, I did absolutely everything the doctors asked me to do! If they said drink water, I drank a LOT! If they said rinse your mouth with some special stuff, I did it a dozen times a day. If they said not to be around sick people or any young children, then I might cry and fuss and try to find a way around that one, but I stayed away from my grandchildren for as long as I had to…so I could be with them now and tomorrow and hopefully many more tomorrows. I would wear my mask and my gloves and wash my hands after going to the store or anywhere. I would avoid gardening, which I loved! And if I cheated now and then, I would go wash right away. And I ate what I was supposed to eat, and didn’t eat what I wasn’t supposed to eat. And I lived.

And every time we turn around, there seems to be something else. You have leukemia. It’s the good kind. Oops, no. The bad kind. You’re a good candidate for a transplant. You’re in remission. It’s back. It’s MRD. What is that rash?!! Your stomach is a mess; you can’t take NSAIDs. You have osteoporosis. You can’t absorb calcium; we need to take out your parathyroid. You are hypothyroid. Here’s a new med for that. Let’s try a trial! Nope, the cancer is still there! We don’t know what’s wrong with your knees; let’s try this, and this, and this…. Oh, wow! You need surgery! You may need new knees. Your numbers are up again. But no matter what happens, no matter what the news, God has allowed us take this all in stride, give us His peace to take it a day at a time. Because that’s all any of us have…one day at a time. The one phrase that was probably the hardest to accept, even though they’ve told me this many times before, is that I will never be the same. A transplant patient, while so thankful for this life, is never quite as strong, as resilient, as enduring, as we once were. I think back just a few years ago to what I was able to do…at fifty! Five years of cancer, and all that has gone with it, has left me tired. Thankful, grateful, joyful, peaceful, but tired.

I will continue to take it as it comes. They will be checking my numbers again at the end of July. I’m praying that they’ll hold steady. Maybe we’ll get me some new knees, and then perhaps someday I’ll beat the odds and be the transplant patient that comes back stronger. We’ll see then if I care how much I weigh.


“For momentary, light affliction is producing for us an eternal weight of glory
far beyond all comparison.”
2 Corinthians 4:17





June 27, 2016

Through It All

Facebook has a wonderful and sometimes painful way of reminding us of things that “happened on this day” in years past. I would have never imagined the changes from year to year. I guess that’s why my phrase “one day, one step, one prayer at a time” has held so strong.

Today, I was having a conversation with an old friend that took me back through some tough memories. God has brought me through a lot in my life. I am thankful that He is always with me; He is forever my Father. He loves me, guides me, and has chosen me. I know as a parent that sometimes we are saddened by the choices of our children, and I know that over the years I have grieved the heart of my Father. But as a parent, I also know the unconditional love I have for my children, and that pales in comparison to the love that God has for me. Just as I continue to pray every day for my children and grandchildren, Christ through the Spirit continues to lift us up to His Father and “intercedes for us with groanings too deep for words.” Rom. 8:26

As I was thinking on these things, an old hymn came to my mind and heart and I wanted to write it down. Nothing seems to compare with the words of the old hymns….


THROUGH IT ALL

I've had many tears and sorrows,
I've had questions for tomorrow,
There've been times I didn't know right from wrong:
But in every situation God gave blessed consolation
That my trials come to only make me strong.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.

I've been to lots of places,
And I've seen a lot of faces,
There've been times I felt so all alone;
But in my lonely hours,
Yes, those precious lonely hours,
Jesus let me know that I was His own.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.

I thank God for the mountains,
And I thank Him for the valleys,
I thank Him for the storms
He brought me through;
For if I'd never had a problem
I wouldn't know that He could solve them,
I'd never know what faith in God could do.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.


And it’s just as simple as that.





May 18, 2016

6.4%

That’s a very small number! Until you compare it to 1.8 or 3.2. Until you’re talking about the “C” word! ☹ Then it can keep you up at night.

Mary, my PA, emailed me with my CLL peripheral blood results and said that my numbers were “up” this month but that Dr. Shah (stem cell dr.) and Dr. Weirda (leukemia dr.) had discussed it and agreed to not pursue anything at this point and would rerun the test in three months. Try not to worry. Right. Well, I immediately emailed back to ask what exactly “up” meant? They have always kept us in the loop with all my numbers, and we are pretty meticulous about keeping track. For the past year that my CLL has been in “minimal residual disease” (MRD) status, my numbers have ranged between 1.8 and 3.2%... a very small percentage. We all liked it that way! It was the next best thing to remission. So to hear that it has jumped to 6.4%...doubled...is a bit troubling.

Over the last few weeks, my Facebook memories have been filled with blog posts that I wrote in May of 2012 when I had my transplant. Such a flood of emotions! I’m so thankful for the time I’ve had with my sweetheart, our kids, grandkids, family, friends. This past year has been a fight for my knees and for finding answers for the pain. The cancer has really been on the back burner. It may still be, but tonight it’s not. Probably won’t be until the next time they check it. Maybe it was a fluke. Maybe it’ll go back down. Maybe it won’t.

If it doesn’t, we’re in a better place than we were almost five years ago when all this started. Dr. Weirda told me earlier this month that there are several new treatments available now that make my options much more open when the time comes. And no matter what happens with percentages, blood tests, bone marrow biopsies, and all the rest, I know Who holds my tomorrows!

One thing that this crazy cancer has done for me is learn to appreciate every moment, live and love every day like it’s my last, don’t sweat the small stuff, it’s all small stuff. ☺

So, if I could ask for your prayers, again, I would certainly appreciate a prayer that my small stuff would stay small! 6.4% is big enough! Once I get to 10%, we have to talk options. And for all who know me, as much as I like to talk, I’d rather talk about something other than this.


“So do not fear, for I am with you; do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my
righteous right hand.”
Isaiah 41:10

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Philippians 4:6-7

“When anxiety was great within me, your consolation brought joy to my soul.”
Psalm 94:19

“An anxious heart weighs a man down, but a kind word cheers him up.”
Proverbs 12:25

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Matthew 6:34

“When I am afraid, I put my trust in you.”
Psalm 56:3


April 14, 2016

On a Wing and a Prayer!

Well, this is our last ditch effort other than living on pain killers. A couple weeks ago, Dr. Shah even ordered labs to rule out Lyme disease! The lady is thorough…and for that we are very thankful.

We have been trying to come up with an answer for my joint pain for over a year now. At first, we thought it was due to the fighter T-Cells from my trial and it would settle down after a few months. Well, that didn’t happen. Tests, drugs, shots, all came up short. Then I read an article that mom found in the newspaper about a lady who had been on Levothyroxine (Synthroid) for years and had developed severe joint pain, insomnia, fatigue, and weight gain. Ding-ding-ding-ding!!!! Those are all of MY symptoms, and I went on Levothyroxine just before my trial. They removed my parathyroid a couple months before my CAR T-Cell trial, before my immune system plummeted again. And I started on the drug shortly thereafter. I have spent the last year blaming my pain on something related to the trial (chemo, T-cells, etc) and never thought to back up a month or so! :/

This lady’s doctor had switched her to the bioidentical hormone, Armour Thyroid. (There are a couple different brands but they all come from the same source.) Within SIX WEEKS her side effects were gone! Her question was why more doctors do not recommend the natural alternative? Good question.

So armed with this information, we did further research and found additional support to the claims of challenges with the synthetic option and benefits from the natural one. While everyone is different and many people have no issues with the synthetic version, many do…including my aunt and my daughter.

Confident that we had found the answer, I went to my follow up appointment at MDAnderson ready to ask, even battle, for a change in my medication. Well, that was not as simple as it might seem. My follow up was with my pain doctor, and he could not change my thyroid prescription. He was not particularly adverse to the idea, but he said I’d have to contact my endocrinologist. So I got online and emailed my appropriate doctor, told him the whole story (I’ve actually seen him during this process), and asked for his help. A few days later, I got a call from his nurse saying that the doctor really did not “recommend” the natural version of the thyroid treatment. And did I know it came from PIG?! I assured her that I did know the source and that I wasn’t requesting permission or recommendation. We had already done our research. No one in MDAnderson had been able to do anything at all to help or remedy my pain other than possibly put me on opioids indefinitely. This was possibly something that could ELIMINATE the pain. And I want to try. I have taken poisonous chemos in the attempt to save my life. What would it hurt to try a natural alternative to try to take away my pain? She said she would call me back.

Several days later, just when I was about to give up, I got a call back from the nurse. HE SAID YES! And this morning I started my first dose. Please pray with us that this, in time, will have a positive effect on my joints. If it helps with the insomnia, fatigue, and weight gain, well that will just be a bonus!!

What a simple blessing to walk with strength again.


“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary;
they shall walk, and not faint.”

Isaiah 40:31



April 1, 2016

Childhood Cancer is No Joke

This past Monday, a precious four-year-old named Grant lost his battle with a stage IV cancer called neuroblastoma. His variety was extremely rare. He fought valiantly for two long years until a fungal pneumonia, along with other complications, overcame his weakened body. The doctors, his parents, Michael and June, and Grant himself fought until the bitter end. He was brave. He had faith. He is now with his Lord. His family, his community, all those who have prayed are broken hearted by the loss of this spirited little super hero. But all are thankful that we know Whom we have believed and that one day will be reunited.

“Each year, the parents of approximately 15,700 kids will hear the words ‘your child has cancer.’ Across all ages, ethnic groups and socio-economics, this disease remains the number one cause of death by disease in children. Despite major advances – from an overall survival rate of 10 percent just fifty years ago to nearly 90 percent today, for many rare cancers, the survival rate is much lower. Furthermore, the number of diagnosed cases annually has not declined in nearly 20 years.

• Every day, 43 children are diagnosed with cancer.
• 12% of children diagnosed with cancer do not survive.
• Children’s cancer affects all ethnic, gender and socio-economic groups.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.
• 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
• There are approximately 375,000 adult survivors of children’s cancer in the United States.
That equates to 1 in 530 adults ages 20-39.”
[CureSearch for Children’s Cancer]

“Many childhood cancers have much higher survival rates when they are diagnosed in the early stages of the disease. Unfortunately, childhood cancers are sometimes overlooked or misdiagnosed because early symptoms are mistakenly attributed to more common injuries or illnesses. It is recommended that children have regular medical check-ups, and that parents pay close attention to the development of unusual signs or chronic symptoms, such as:

Persistent fever, nausea, or illness, often accompanied by vomiting
Tendency to bruise easily
Unusual lump or swelling (particularly around the neck, abdomen, chest, pelvis, or armpits)
Loss of energy and pale complexion
Headaches, often with early morning vomiting
Lingering pain in one area of the body
Abrupt vision changes
A whitish color behind the pupil
Sudden weight loss
Limping

Genetics may predispose some children to developing a specific type of cancer—if you are concerned that your family history puts your child at a heightened risk, discuss your worries with your child’s pediatrician. He or she may recommend imaging tests (i.e. MRI, x-ray), additional screening tests, and/or a biopsy if your child presents with an abnormal lump or tumor. The biopsy will involve removing some or all of the cells within the tumor for closer examination under a microscope.”
[American Childhood Cancer Organization]

“Childhood cancers are mostly those of the white blood cells (leukemia’s), brain, bone, the lymphatic system and tumors of the muscles, kidneys and nervous system. Each of these behaves differently. Cancers in very young children are highly aggressive and behave unlike malignant disease seen at other times of life. The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80% of children show that cancer has spread to distant sites in the body when the disease is first diagnosed.”
[www.ChildCancer.org]

“A child with cancer must be diagnosed precisely and treated by clinical and laboratory scientists who have expertise in the management of children with cancer. Advances in treatment have been made in some childhood cancers; however, many cancer types offer very aggressive treatments with lower survival rates. Many treatments include: several rounds of chemotherapy, tumor removal, radiation therapy, bone-marrow-transplantation, and various clinical procedures.”
[www.ChildCancer.org]

This is something that was found true in Grant’s situation. He endured strong, antiquated, adult-type treatments because very little had been discovered for his disease and for his size.

Only 3% of government funding goes to pediatric cancer research. A fund was established in Grant’s name to try to start making a difference, one dollar, one child, one step, one prayer at a time.

www.grantinggracefoundation.org

Tomorrow at 11:00 a.m. Eastern Time, there will be a celebration of Grant’s short but amazing life. His favorite colors were red and blue and he LOVED superheroes, especially Spider Man, Iron Man, and Captain America. Folks have been asked to wear those shirts or colors in his memory. At 12:15 p.m. Eastern Time, there will be a balloon release there in Georgia. But if anyone wants to join in from wherever you are, Grant will be able to see them from where he is!

Please pray for the Gossling family as they continue their journey without their beloved Grant…one step, one prayer at a time. And if you have been moved or touched by this family and their little superhero, please consider giving to childhood cancer research. Then hold your kids and thank God for giving you one more day.



March 28, 2016

2016, March 28 – My Baby Girl

This morning, I am packing my bag and heading up to the Dallas area to spend a couple days with my baby girl. She’s turning 31. And she has three babies of her own. When did we get here?

Wasn’t I just 31? Wasn’t I just 13 for that matter?! How quickly the years go by! I remember my mother telling me when my children were little to cherish the time because it goes by so fast. But DAYS can be long as a young mom, and you don’t realize that those days turn into years until you blink and they’re in school; and then you blink again and they’re graduated, married, with kids of their own!


My girl was often the one to give me a little lip in the old days. But she is now the one who talks to me the most…multiple times a day, who knows the heart of my every tone, who makes a game of helping me find the words that now so often escape me. We talk about recipes, raising kids, doing life. She makes me laugh. I give her perspective.

She has the strength of the women of our family. The girl is amazing. She juggles being a mommy to three busy, adorable, loving, crazy children, and babysits her cousin’s one-year old. That makes four! Plus, she runs two businesses out of her home in addition to simply taking care of EVERYTHING. She has an internet business called, It Works!


And she has a fast growing bakery business, making beautiful and delicious homemade cakes and cookies for just about any occasion, called The Purple Kitchen. She reminds me of the Proverbs 31 woman using her gifts to provide for her family; her lamp does not go out at night, and she is never idle.

“Many daughters have done well, but you excel them all.”
Proverbs 31:29


I am thankful for my baby girl. I am looking forward to a couple days of dishes, cooking, laundry, constant noise, books, songs, and loving on her and her family. We’re going to have a Girls’ Night Out on her birthday! Make a few more memories. Have a few more conversations. Laugh a lot. Maybe even shed a tear. That’s ok. That’s life. That’s living. That’s part of knowing.

Happy Birthday, baby. I love you!


“Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children and to their children after them.”
Deuteronomy 4:9