Saturday, July 2, 2022

Almost a firecracker

Happy Saturday! Today would have been my Daddy's 90th birthday. It's so hard to believe he's been gone for 11 years now. I sure miss him. He used to always tease and say he was almost a firecracker. He loved the fourth of July and would always shoot off black cats and M80s. Mama was always afraid he was going to blow his hand off because he'd wait until the last minute to throw the firecracker. He loved to put them in tin cans too to hear the loud bang. He would laugh and laugh. Of course, we only got to hold sparklers, but it was so fun to see his boyish excitement over something so simple. 

He'd always stop at roadside stands a few weeks before the holiday to buy fireworks. His parents used to live in Griffin GA which was a little mill town. No one there made more than probably 10,000 a year if that, so little luxuries meant everything. 

On the fourth of July, we'd usually fire up a little charcoal grill in the backyard and cook hotdogs and hamburgers. It was a big deal because we didn't get to do things like that often. Daddy loved cooking out, too. I can still see him shirtless, in his jeans and loafers with his Brylcreem slicked back hair. He'd be sweating like a pig but he loved every minute of it. 

My brother, sister, and I would be running around the yard barefoot playing tag or chase or something and Mama would come out occasionally with her apron tied around her waist to oversee what was happening. 

When it was time to eat, we'd usually go inside because the bugs were bad in the summer, but sometimes, we'd get to eat outside. That was a treat, especially when we had a ripe, juicy watermelon for dessert. Daddy taught us to spit the seeds and we had a blast with red juice running down our chins and yellow jackets buzzing all around. 

There are so many things I remember about him. He was so fun loving but also had a temper at times. I miss him and think of him fondly. 

Losing parents is hard. Even when you're grown and know death is coming, there comes a time when you'd give anything to hear their voice again, to feel their touch, or just sit in their presence. 

Daddy, you were a firecracker in my book and always will be! You were something else! You lit up my sky with your smile.  

Tuesday, June 28, 2022

Backtracking isn't always a bad thing

I've always been a person who liked to move forward, even when the path was difficult. As an avid hiker, I'd rarely waste time researching trails even though trail guides provided a lot of information regarding difficulty levels. If I'd given a little time to studying those maps, I could've saved myself a lot of trouble. Sometimes a trail ended up being more strenuous than I expected and my aging knees balked. Other times, I'd find myself on a very unfamiliar trail, only to have to back track when I got off course. Nowadays, many hikers use portable GPS devices to pinpoint their location. I can barely follow Google maps and heaven forbid if I find myself in a dead zone. I can get lost really fast. 

Navigating isn't my strong suit, but since I like to hike, I do. Even though I don't use a GPS, I do try to be cautious and protect myself from injury. I wear sturdy shoes. I take along extra water, rain gear, and a few snacks. I also notify family where I'm headed. 

Serious hikers, like my cross-trekking friend, Marie, use pacer poles. On a recent trip to Israel, she introduced me to them. Though we weren't hiking through the mountains the entire trip, we were hiking over rough and uneven terrain. Even in the city, traveling over thousand-year-old bedrock, the stability those adjustable metal poles provided was so helpful. I felt more safe and secure using them to maintain balance. Thinking about those poles today made me realize how much I wish I had pacer poles for navigating cancer. 

When I was first diagnosed, I didn't know where to turn. We'd just moved to a new city and were barely established. I hadn't even had time to unpack all the boxes before my calendar began to fill with medical appointments. I used the internet to find an OB/GYN. That doctor led me on the most treacherous path I'd ever taken. From her office, I was referred to a breast specialist and then, to an oncologist. 

As time went on, though I received good care with those doctors, I felt I needed more. When a new cancer treatment center was built ten miles from our home, I decided to check them out. It was a new concept in cancer care. They provided everything in one location - imaging, chemotherapy, radiation, infusion, also a gym, library, massage, chiropractic, acupuncture, nutrition, and even a chapel. Ditching the other doctors, I applied for healthcare with the new treatment facility and was happy to be accepted. At that time, only a certain percentage of city residents were accepted due to the center's policies. They were a regional facility and one of 5 locations spread across the United States. It was important they keep some spots open for out of state residents, too.  

The cancer center was wonderful, and I loved receiving integrative care there, but when my oncologist, Dr. H left, I felt abandoned. Of course, I was assigned another doctor shortly thereafter, Dr. M, but he didn't know me or my history. I felt uncomfortable and decided to go back to the original team. They asked for records from the treatment center and scheduled an appointment for me to become reestablished as a patient with their practice. 

When I went in for that appointment, I felt like a fish out of water. Though everyone was nice, nothing was the same. Dr. F, my first oncologist, had moved on and once again, I was assigned another doctor, Dr. P. At my scheduled appointment, I saw a nurse practitioner for about twenty minutes and Dr. P for five. It didn't feel right, and I didn't like it.

Six months have passed since that visit, and I've been ruminating. I really liked the care I received at the cancer treatment center. They focused on all of me, not just my physical well-being. The integrative health care approach was appealing, and I'd missed it, so I called the center and asked how to restart treatment there. 

The scheduler hesitated when I explained my situation. She'd never had anyone leave and request to come back months later. She was cordial and promised to pass my information on to the patient care team. She gathered pertinent information and after we finished our conversation, I felt flustered. I wondered if I was being unreasonable wanting to back track my cancer care or if it my right to do so? If I'd been hiking and missed a turn off, I'd have backtracked as soon as I realized I'd gotten off course. What was the big deal about doing the same with cancer care? Didn't I deserve to have the very best care available? Certainly, anyone would understand my plight, right? But I wondered if they might think I had a few screws loose. 

Now I wait for the phone to ring. I'm hoping the cancer treatment center will re-enlist me as a patient. If they want me to grovel, I'll do it. It feels a little like I'm a spoiled rotten kid. I want things my way and I want them now! But that's not exactly the way it is. All I want is a doctor who spends time getting familiar with my case and doing whatever necessary to insure I enjoy a long, healthy future. I'd like to remain with the same physician for a very long time and have a good doctor patient relationship. The doctor, in essence my human pacer poles, would help me stay on path with surefootedness. 

Navigating cancer care isn't always easy. At times it doesn't seem to make sense at all. When the path meanders into uncharted territory, patients can easily feel unsteady. But it's okay to go back a few steps if necessary and start over again when you must. 

I may end up being the poster child for indecisiveness, but at least I'll be confident in my health care team's abilities. Being able to choose what's best for me matters, no matter what others think. 

Thursday, June 23, 2022

Modern Day Leper

Yesterday we had a new dishwasher installed. The man who came to do it was fast and efficient. We did our best to make him feel welcome in our home, talking to him about various and sundry things as he worked, but we could tell he was uncomfortable. He wore a mask and gloves - of course we knew it was due to Covid concerns, but it seemed so unnecessary. 

When he finished his work, we thanked him and I offered a gift of gratitude. Though he accepted my gift, he made sure my hand never touched his gloved one. When I stuck out my hand in thanks, he thrust his elbow at me. "Oh," I said, "I get it. Covid. Okay." With that, I gave him the acceptable elbow bump and he was on his way. 

I felt like a leper. 

I don't do well with rejection. It's been a thing since childhood. Rejection hurts, no matter how large or small it may be. 

Thinking about the worker's fear of contracting a disease from us made me feel sorry for him. I understood it and respected it, but wished he'd been more open to our hospitality. 

That led me to think back to Biblical days, where true lepers existed. Back then, leprosy was considered not only a health risk but a curse for some unconfessed sin. People with leprosy were considered outcasts and forced to live away from society. Alone and abandoned, these people suffered terribly. Their skin condition caused all sorts of problems as it disfigured their body but the emotional toil must have been much greater. 

I've seen movies on the Bible where lepers entering a town had to call out, "UNCLEAN, UNCLEAN." Their warning was meant to keep healthy individuals away. How painful that must have been for them, to not only suffer physical maladies but to suffer social anguish, too. 

Lepers still exist in the world today. In Africa, Asia, and other parts of the world, there are colonies of lepers living together. Many organizations work to help them receive medication and treatment for their disease, but still, the stigma of uncleanness follows them. 

I've often wondered what it would have been like to have lived in Bible times. With my heart of mercy, how would I have responded to a neighbor or friend with leprosy? Would I have shunned them or tried to help them? I'd like to believe I would have done whatever necessary to give them aid. 

I find it interesting that Jesus healed many with leprosy. He never condemned them, but had compassion on them. 

Can you imagine what it felt like for the leprous man to call out to Jesus asking for healing the one fateful day their paths crossed? He called out to Jesus saying, "Lord, if you're willing, you can make me clean." That man had big faith. He knew Jesus had the power to heal him and he wanted to be healed. 

Jesus could have just said, "Go, your faith has made you clean." But He didn't. Instead, He reached out and touched the man saying, "I am willing, be clean."

That touch...that marvelous touch must have lingered on the leper's arm for days afterward. How long had it been since anyone had touched his scarred and damaged skin? 

Can't you just imagine the power of Jesus' love flowing into the man's body as His fingers graced the man's skin? I can! I'm sure it was electrifying! Instantly, the broken man was whole. 

That's the kind of compassion Jesus has for you and me. He meets us in our brokenness and makes us whole again. He understands our struggles, our fears, our weaknesses and offers us His love, mercy, and grace in their place. 

I'm so thankful we have a Savior who sees us and cares deeply for us. He wants us to be whole. He doesn't force Himself on us, instead, He waits for us to approach. When we do, we must do so with boldness and confidence knowing He not only wants to help, He will help, for He is the lover of our soul. 

When Jesus commanded the leper to be clean, He didn't only cleanse the outside of the man's body. He also cleaned the inside. What joy the leper must have felt to have finally been made whole again! He was restored, set free, loved and accepted. The Savior had seen him, heard and honored his request, and he would never be called UNCLEAN again. 

Tuesday, June 21, 2022

Money, money, money, money....MONEY!

This morning I was scheduled for a barium swallow study at the hospital. Thankfully, hubs took off work and went with me. 

The test was different from the last one I'd had done way back in the 70s. I was so glad! I didn't have to swallow that nasty, chalky barium liquid like I did when they were testing me for gallbladder issues then. Nope, the stuff they gave me today was fairly pleasant. 

They started off having me swallow a light barium liquid. I had to hold it in my mouth until they said swallow and as the liquid was going down, they filmed it. Next, we progressed to a thicker mixture. After several images, they gave me a spoonful of what looked like marshmallow creme. I called it Fluffy Whip and the technician laughed. After I'd gotten that down and the video had been filmed, I was given a graham cracker with more Fluffy Whip on top. It took a few minutes to chew and swallow. As they filmed that one, the girl asked me if it was difficult to swallow and I had to shake my head yes. The food wasn't going down well. 

When the test was over, the tech asked if I'd like to see my films. I was really surprised. I thought that was against the rules but I did want to see them and was amazed to watch my body in action. On the cookie swallow, the tech showed me where the food got hung in my throat. She said that indicated a problem that needed to be addressed by a gastrointestinal doctor. Apparently, they're going to refer me to one for a follow up, so that means more medical expense. I sure hope it's nothing serious. My brother had esophageal cancer. I don't know what I'd do if they said that about me...

On the way home from the appointment, we stopped by Wally World to pick up some groceries. I got mostly produce and about fell out when the bill was tallied and the total was $324.00!!! Oh my stars! It's total insanity! I don't know how in the world people are going to manage with groceries out of sight and gas prices continually rising. Thankfully, I had a credit card in my purse otherwise, it would have been a fiasco. 

On top of that, the water pump in my car went out and the mechanic said we have a major oil leak. The estimate is just under $1000.00! Whoa! We've been doing our best to maintain our old cars in order to avoid a car payment, but looks like a new car is definitely in our future. Patching up these old ones is getting more and more expensive.

And how do folks manage when they're on a fixed income? Soon we'll be living solely on Social Security and I have no idea how we'll survive, but I can't borrow trouble. I can only focus on today and trust that God has our future in His competent hands. 

It's hard to make it in today's world. Everything seems to be getting more and more expensive. I'm glad I grew up poor because I know how to squeeze pennies until they bleed. 

Life is challenging but we always have to be grateful for our many blessings. 

Okay. My rant for the day is over. Truly, I am blessed beyond measure. Some days are just tough. 

Monday, June 20, 2022

Could Supply Chain Issues Negatively Impact Cancer Care?

With the recent supply chain problems, people all over the world are finding themselves in precarious situations when things they need and rely on are unavailable.

A recent trip to the grocery store opened my eyes in a big way. Many of the shelves were empty and the ones that did hold product were sparse. News reports and social media outlets have been reporting on supply chain issues for months. I hadn’t really given them much thought until I was an eyewitness.

As I wandered through the store, picking up essential items, I wondered what would happen if one day in the near future, we weren’t able to have access to necessary medications? I wondered what would happen if I couldn’t get my blood pressure medication? Would it spike rapidly causing an emergency room visit for intervention? And what about my thyroid medication? What would happen if I couldn’t get that? I don’t have a thyroid gland and need the hormone to make my body function properly. Thinking about those two possibilities scared me, but also caused me to think on a grander scale. What about those depending on chemotherapy medications to fight cancer? What would happen if they weren’t able to go for their infusions or receive maintenance medications like Tamoxifen?

Though I’m not currently using any cancer medications, I know people who are. Those people are in various stages of treatment, and I can only imagine how life would drastically change for them if they were unable to have the medication needed due to something out of their control.

As I began to research this potential problem, I was shocked to find several articles corroborating my worst fears.

It seems medication shortages began when Covid 19 hit and many cities in China were shut down. Since China manufactures many of the pharmaceuticals used by America, we began to feel the effects rather quickly. Then, a large pharmaceutical manufacturing company in Israel, Teva, closed causing even more problems.

The FDA began listing medications that were in short supply and among those were drugs used in chemotherapy and other serious health conditions.

In a 2021 a study conducted by the American Society of Clinical Oncology (ASCO) oncology drug shortages were reviewed. The study noted five oncology drugs in short supply including epirubicin, flutamide, decitabine, mechlorethamine, and dactinomycin. Those drug shortages along with more recent ones, such as the drug Abraxene, caused some patients in Alaska to postpone lifesaving treatments.

The FDA maintains a database of drug shortages. Looking at the list is disheartening as many medications currently show a status of low supply. So, what does a person fighting cancer do when unable to obtain medication to treat the disease? Do they seek alternative methods or wait out the storm hoping for a quick resolution?

In many cases, alternative options aren’t available, but for those willing to do whatever necessary to survive, consulting a trained naturopath may provide helpful tips or options.

Supply chain issues are becoming more concerning day by day as the availability of diesel fuel becomes sparser, gasoline prices rise, and goods are disappearing from the shelves. Though grocery items are probably more noticeable than medical supplies to the average joe, we’d better be paying closer attention, especially when it comes to our health concerns.

Out of curiosity, I wandered to the pharmacy section while visiting big box store and took stock of the supplies there. I thought it wise to pick up a couple of bottles of Acetaminophen, some antacids, and other over the counter medications just in case I needed them for future use. Those items should be staples in every household for common health issues but don’t do a thing for more serious problems like those related to cancer. I didn’t expect to see such low quantities on the shelves. Though I didn’t need anything urgently, I picked up some extra boxes to pad my emergency supply at home.

My heart goes out to those currently undergoing cancer treatment requiring medication. I can’t imagine how frightening it must be when they consider the possibility of not being able to have their treatments as scheduled. It would be a real shame to go in for treatment only to be turned away due to lack of supply. Let’s pray a solution can be reached before conditions become dire.


Friday, June 17, 2022

Who's your Daddy?

I'll be telling my age when I mention a really cool song by the Zombies - Time of the Season, but I thought it appropriate as I write this post about Father's Day. 

In 1967, the song came out and I fell in love with the melody and the lyrics. The chorus would get stuck in my head and live there for days. See if you remember it -

What's your name? (What's your name?)
Who's your daddy? (Who's your daddy?)
(He rich) Is he rich like me?
Has he taken (Has he taken)
Any time (Any time)
(To show) To show you what you need to live?

(Tell it to me slowly) Tell you what
(I really want to know)
It's the time of the season for loving

You can watch/listen to it on YouTube if you aren't familiar with it: 

Anyway, I always wondered about those who had no idea who their Daddy might be. I'm thankful I know who mine was and boy, do I miss him. 

My Daddy was a character. It's hard to believe he's been gone for 11 years now. He was an honest, hardworking man with a great sense of humor. I could write volumes about him but I won't. Instead, I'll share one very special moment from the Caring Bridge journal I kept for him during his last months as he was battling lung cancer.
This journal entry was dated Wednesday, June 22, 2011:

....As I was preparing to leave, I leaned down to tell Daddy goodnight and encouraged him to go back to bed. He always thinks he has to stay up until the last visitor leaves. I rubbed him on the back and said "I love you" and to my surprise, he said, "I love you three." "I love you three???" What does that mean? I had to think about it a few minutes until I got it. Usually when someone says I love you, the recipient of that sentiment responds back with "I love you, too."
You'd have to know my Daddy. He loves to joke around and so instead of saying, "I love you, too (two)", he said, "I love you three." Daddy never has been a very affectionate father. Oh, he's always loved us, but he just wasn't very vocal about it. I don't guess he ever thought words were really that important. I think he thought if he knew he loved you and you knew he loved you, then why bother wasting words. For him to tell me, "I love you three," was a really powerful statement and one I'll always treasure. Daddy, in his dying state, wanted me to know that he really does love me and though he's a man of very few words, he chose those four very carefully before he said them. Those four words were meant just for me. "I love you three." ...I love you Daddy. I'll always love you.
On August 18, 2011, Daddy went home to be with his Eternal Father. I'm sure this Father's day, just like every other day in Heaven, he'll have a grand celebration.

I sure loved him and miss him every single day. 

Tuesday, June 14, 2022

Hope on the Horizon

This weekend, my daughter emailed a copy of a newspaper article to me. She knows I like to keep up with all things cancer related and would definitely be interested in this miraculous news. 

As I opened the email and began reading, my jaw dropped. I could barely believe my eyes. 
The email contained an article about a small clinical trial involving a dozen rectal cancer patients. The trial participants were given a monoclonal antibody, Dostarlimab, every three weeks for a period of six months. (This drug is sold under the name, Jemperli, by GlaxoSmithKline and has been approved by the Food and Drug Administration for use in treating some types of endometrial cancer.)
During the trial, diagnostic tests were performed on each patientand the results were almost impossible to believe- the rectal cancers were gone! This was remarkable news and oncologist, Luis Diaz, Jr., MD, with Memorial Sloan Kettering, said: “I believe this is the first time this has happened in the history of cancer.” 

All I could say was, “Wow!!!” The news was so exciting and all I could think was, “Now there’s real hope on the horizon.”

For the past 8 years, I’ve prayed for a cure for breast cancer. I’d always hoped for a cure for cancer since my first brush with it over forty years ago, when a dear friend was diagnosed and I’d watched her succumb to the disease, but when it entered my life, I took it personally. That’s one reason I’ve read and studied everything I could related to breast cancer. But breast cancer isn’t the only cancer out there. There are so many types of cancers and all cancer, in my humble opinion, needs to be eradicated. 

Of course, there’s big money in cancer treatment and I’ve often wondered if that’s why we haven’t found a cure for many cancers yet, but this clinical trial is so promising, I hope people will understand the magnitude of it. 

Though promising, the trial authors cautioned more research needs to be conducted on the effects of Dostarlimab. They hope to increase the size of the study by adding participants but are optimistic that this drug will prove safe and effective. 

The medication is extremely expensive, running about $11,000 per dose, but many experimental drugs are very costly in the beginning and hopefully, as studies continue, the cost of the medication will be lowered

The study indicated there was a low evidence of side effects and seemed to be well tolerated when compared to other types of conventional treatments for cancer. 

All in all, it sounds like this clinical study was a huge success. 

As a cancer survivor, I am extremely happy to read about a successful study. More often than not, we only hear about the bad news with regard to cancer treatments. There are so many negative side effects from chemotherapy, radiation, and even anti-hormone therapies. 

The possibility of new drugs with few side effects able to cure cancers is almost too good to be true, but this small study proves it can be done.

There is hope and we must cling to that. We need more survivors in the world today, ones who will join us in hoping soon that we won’t have to fight cancer anymore because there won’t be any cancer to fight

Almost a firecracker

Happy Saturday! Today would have been my Daddy's 90th birthday. It's so hard to believe he's been gone for 11 years now. I sure ...