I feel like I’ve been beat up, pummeled, and bruised by this world. CLL was not the first thing that happened to me that threw me for a loop. I have had a lot of, “Why me, God?” moments.

And I’ll bet you have felt the same way more than once. It seems like we are always coming into it, or are currently in the thick of it, or have just come out of some trauma. It’s endless. I wanted to take some time and talk about some of my most fearful moments and things that have shaped me as a person and my view on my health.

I never had anything major happen as a child. Except for knocking out my tooth at age 4 and having bad chicken pox later around 4th or 5th grade. No broken bones, no stitches, no tonsillectomy! So it was later when things heated up.

At my first job as a medical biller in 1995 at age 24 and they ran a test for my employment. It was called the PPD test, and it tests for a disease called tuberculosis. I had never heard of tuberculosis coming from the small farm community where I grew up. I had traveled very little. I had only worked a few jobs: grocery store, convenience store, dining services while at college, shoe store. In a medical facility, the test is just a routine thing.

I tested positive.

I’ll never forget that day. The employer was a hospital, and they literally panicked and shut me in the room after seeing the results and left me for like 10 or 15 minutes by myself. When someone finally came back in they gave me pamphlets on TB and asked me if had been a needle drug user or if I had been in prison.

Needless to say, that was a bad day, but the week just got worse. I was sent for a lung x-ray to determine if it was “active” TB. There was no indication of that, but an insensitive x-ray tech showed me the results and said, “This spot here looks like lung cancer.”

That’s when I went to the restroom and vomited. I had had enough.

But it got even worse. They wanted to look closer at that spot on the x-ray and ordered me an MRI. And I didn’t have health insurance yet!

I left this out of my “Letters to Mom” blog, because I wanted to focus on the positive memories. But now I remember the day of the x-ray, I was staying with a room mate on the east side of my city, but when I called my mom, she drove over an hour to see me and I believe she spent the night with us.

I have been blessed with wonderful friends. The one who held my hand while they gave me the x-ray results and the other one who took me for the MRI. The room mate who held me while I cried before Mom came over. I have never been more afraid in my life.

The MRI showed absolutely nothing. They said it was probably just a shadow on that x-ray. So, at that point, I forgot all about that pesky positive PPD test. I felt fine and I was only 24 years old. My entire life was still ahead of me. I did not pursue treatment as it was presented as being optional at that point.

I left that job for a better paying medical job. I was newly engaged to my husband Gary. My employer said they would be doing a PPD test.

I cringed.

The test was even more positive, even more obvious than it was the first time. But this time, I was treated with respect by my employer and they told me that it was a very good idea to be treated. I remember that the red spot was with me for weeks (maybe even over a month). My mom took a picture of me trying on a wedding dress and the spot on my forearm in the picture sticks out like a sore thumb, forever seared in my memory. Per the advice of my doctor, I contacted my old room mates and told them that they should probably get tested. My family got tested. All were found to be negative, which was a relief.

How in the world did I contract this heinous disease? No one could provide answers.

The positive PPD is reported to the county in which you reside. It is much like the information that is being recorded for Covid-positive cases. I actually had to report to the county for the treatment. Then I had to report monthly to get my next 30-day dose of Isoniazid, the 9-month antibiotic course most often prescribed, and I would sit in the waiting room surrounded by folks who had just immigrated from foreign countries to our area. I was often surrounded by people who were not speaking any English. It was a little lonely, but the doctor (a pulmonary specialist for the big research hospital in our area) was very kind.

It was surreal. But I got through it. And here’s a fun fact: once positive with PPD testing, it will always produce that ugly red welt on your forearm! So who knows if that 9-months of Isoniazid really did it’s job or not. You really just have to trust the drug, I guess.

Our first year of marriage on our first Valentine’s day, my husband got very sick and had to be hospitalized for a phlegmon. This is an uncommon issue caused by when the appendix bursts and the body builds an abscess “wall” around the issue. And then a phlegmon, which is a serious infection resulted. So the hospitalization was to treat the infection to ready him for removal of the appendix. That was fairly frightening. At the time of writing this, Gary did some research and I think he realized the severity of what happened to him. The doctor made light of it, but apparently, it was nothing short of a miracle. I remember that day, driving him to the surgeon appointment, and with every little bump in the road he cried out because he was in so much pain. Here I was a new bride of 6 months, and I had no idea what was going to happen. I thought I might lose him.

Then a few months later (again, before our 1st wedding anniversary), Gary’s mom almost died from pneumonia. She was in a coma for 2 weeks, and the family was told to prepare for the worst. Interestingly, her pulmonary specialist was the same one I had at the county while being treated for TB. And that same research hospital pumped her full of anti biotics and did everything they could to save her life. And they did!

My 30’s were pretty boring accept for having basic fertility treatments. But for anyone who has been through them, they can be anxiety provoking. And I honestly hoped there would be firm answers, or maybe that it would be Gary’s fault (right?!?). But we were both tested, and nothing obvious was found. Everything was working correctly. Decided not to go for the artificial methods. But no real clear-cut reason was given us for not being able to conceive.

So fast forward to my 40’s. Unbeknownst to me, I have “caught” blood cancer. It might have been lurking around in my system for about a year or so before it was firmly discovered. No matter how much I read up on how we contract blood cancer, the more questions I have. No family history, no major illnesses or immune system deficiencies, I never smoked, I never knowingly exposed myself to toxic chemicals, I was never in prison or a needle drug user (that was tossed in there to see if you were paying attention earlier).

I always figured I had a good chance at being diagnosed with a cancer, but during the time between the first blood test and then the 1st visit to the hematologist, I was numb. I cannot explain to you why I thought I would have cancer someday, as there is very little family history. I only remember my grandmother on my mother’s side and her very fast moving kidney, liver, lung cancer that took her life when I was very young. I suppose my thought process came about because of what I have done for a living since 1999. I assist people with their applications for permanent disability. One thing I have learned as you hopefully have: Cancer does not judge. It picks on whoever it wants. Sometimes it picks on the same person over and over. It is a formidable foe!

So when my CLL was first suspected, there was the hassle of trying to get the specialty blood tests (the Flow and FSH) done in preparation for the fated January 5, 2017 hematology appointment. It was Christmas time, and every time I went to the one and only lab where I could get the Flow/FSH they had some reason or other I was not able to get it done. And at that point, my job location was at least 45 minute drive away from all my medical appointments. I was so frustrated and scared at same time.

I nearly gave up.

And while I waited for that January 5th appointment, I Googled all the possibilities. My friend had just passed in June of 2016 from a non-Hodkins. There was a chance it could be that. Or HIV. Then the doctor told my husband and I, “You’re too young to have this, but don’t worry, it’s the good cancer.” When I tell that story, I undoubtedly say in my head, “there is no good cancer.”

Again: How in the world did I contract this heinous disease? No one could provide answers.

I am detailing these things because there is a choice, a crossroads, so to speak, with any difficult situation. We may move forward like a zombie in doing all the things the doctors require. We can, many a time, choose joy over the fear, but what happens when The Fear takes over?

I know that every reader here has grappled with their own Fear monster at one point or another. What is your coping mechanism? Maybe you initially freeze up and become unable to function. Maybe you try to run from it. Maybe you numb it with substances, like drugs and alcohol. Or perhaps all of the above!

The science behind our fear, anxiety and anger reactions is intriguing. So many body systems coming together to do an important job!

https://www.healthline.com/health/what-part-of-the-brain-controls-emotions

Mine? Throughout my childhood and probably until the last five years or so, I was a huge crier. Everything made me cry. For example, when I couldn’t the blackboard in 5th grade the day my eye sight changed for the worse, I burst into tears. If anything struck me as remotely sad, I had uncontrolled sobbing. I couldn’t stop the tears if I wanted to, but I learned to keep going through them. Now I cry much less, but sometimes sorrow sits on my bosom like a heavy, dark fog and it seems like it will never dissipate. Yet the sobbing remains inside.

I believe there is a God almighty in Heaven orchestrating everything. He knew me before I was formed in the womb, such a remarkable concept. He prepared me for each moment, but I did no know it until August of 1996. Prior to that, there was no one to collect my tears. They otherwise fell empty to the ground.

My friend at the time, Gary, was pleading with me gently to understand the Goodness of God. I had come into our friendship, very indifferent to God, thinking that He did not care about the little guy. Gary kindly explained the God of the Bible, and the loving sacrifice of His son Jesus.

It clicked, and I was loosed from my handcuffs. The blinders came off my eyes. I still remember that moment. I wanted to know more after that.

As I mentioned above, there are still tears, but I am comforted by the Words of God. God loves our tears. Look at this link that talks about this concept:

https://www.ministrysamples.org/excerpts/WHAT-GOD-DOES-WITH-OUR-TEARS.HTML

I have fears. I am afraid of growing old and having no one to take care of me. Fear of heights. Fear of deer running out in front of my moving vehicle. Fear of cockroaches (which we don’t really have here). Afraid of infections that will land me in the hospital. Fear of flying. Fear of secondary cancer. Fear of my husband dying first and me having to figure out the things here at home he handles.

It’s ok to have fears, but it’s another thing to become controlled or manipulated by them. They have a function, as sometimes they cause us to spring to action. I refuse to be controlled by fear. I instead prefer to take things one day at a time, and to take time to stop and smell the flowers. Since my mom has passed this year, I have had cut flowers in a vase of varying kinds since. I bask in their fragrance. They offer such beautiful color in the midst of a very snowy winter where everything outside is grey and white. Besides my nine to five job, I enjoy painting by number, folding socks, and I have been crocheting myself a new scarf. I enjoy laughter and try to make as much joy as possible with whomever I meet. I write. I read. I study the Word of God and keep it close to my heart. I dance and I sing (not publicly, usually). I also really enjoy my Blood Cancer support peeps. I appreciate each and every one of you, coming together, sharing your life journey with me. It bothers me that I cannot take your pain away.

Consider the Lilies was born out of the concept of living life fully, one day at a time. Luke 12:27-the lilies do not have to toil or reap for their provision, and the Bible urges us to think the same way. This doesn’t mean we shouldn’t work with our hands as long as we can. Originally, it was a Facebook page born out of my sorrow and distress over being diagnosed with cancer; however, it talked very little about it. It gave me distraction from “The Elephant in the Room”, so to speak, and I learned a lot of new things along the way. It’s a public FB page if you want to look at it.

I wrote this recently to a friend in a text: “I teach the kids in Sunday school. I love life! I get tired a lot, but I just keep going. I don’t understand how, but I’ll do what I can for as long as I can. And I am trying to run ahead of “age” as long as I am able.”

In 2016 my husband said to me, “There are two things I wish we could accomplish this year. One is getting Foster Care certification and the other is to get our gun permits.” It was such an intriguing idea….for both things we would have needed references. At any rate, we didn’t do either. And at 45 years old at that point, I had more interest in the gun permits than using precious energy on the intensive Foster Care certification classes. And life kept barreling forward. Honestly? I have been very content to be where I am in my journey without having done those things. Additionally, in 2016 I wasn’t feeling well and it wasn’t until September of that year that I had the fated physical that discovered the anomalies in my blood work which lead to my 1/2017 CLL diagnosis.

We were joking with some friends at dinner recently about “bucket list” things. One of mine is to be a “paper boy” and that might just not happen as paper media becomes more scarce. But I had lived in the country growing up. The paper boy delivered the paper by driving from house to house. Another thing is to drive a large snow plow. Perhaps someday….

Stay busy my friends with the things you love that you can still do. If you cannot do them anymore but can still enjoy that others can, do that. Make new friends. Start a new hobby. If you are finding that you are completely unmotivated and unable to snap out of your Fear, please seek professional help. It’s ok. If you have been on our weekly chats, you would know that many people are accepting and understanding that medical intervention is often necessary as we personally deal with illness that side swiped us and in some circumstances pulled the carpet right out from underneath us. And do not be afraid to tell at least one friend how you are feeling.

I hope you all continue to dream and to share your dreams with people around you. I pray that you do not give up on Life and give in to The Fear. You are here for a great purpose. At this time of your life, Treatment may be all that you can see, but you can certainly dream of what lies ahead.