She has developed something new…

Leukemia is a disease that continues to surprise us. People ask “how is it going?” I explain that she has been in remission since January 2022 and that the treatment protocol continues without interest if the disease is currently “Visible”.

Visible

I say visible because that is really the best way to describe it. The test and equipment used to test are unable to detect the presence of the disease. However, the doctors and researchers only accept that is the current state off the technology. Not necessarily of the disease.

Considering the huge advances in technology over the last 100 years, I have to agree that we should not all get excited yet. Today, we accept the disease is not visible and wait for the latest test to confirm it.

Rewind to the weekend and last night

This weekend, she started complaining about a pain in her foot. Naturally we wanted to think that maybe she strained it. There were a couple of times where she had needle like pain that brought her to tears. I suffered from gout for many years and I thought that maybe that is what it was. It turns out it was not.

Neuropathy… We know that the chemo does cause neuropathy in the extremities. Most of us will know that as a tingling or numb feeling. One of the chemos on this round, nelarabine, can cause neuropathy. Today the doctor confirmed that it was what was going on.

Those that know Michele would count the number of times she has had tears in her eyes on one hand. Last night the pain was torturous. It is the kind that, as an observer, I can only say that it looked like someone was holding her tendons and twisting them into a painful pose. A Charlee horse may be a distant cousin in the way that it just appears.

Needless to say, we had a lack of sleep and a high alert for it to attack again. We found a couple of things that reduced the immediate effects that then allowed an attempt to sleep. It is not often that I witness Michele locked down in pain. Much like the night she fainted, I stood by with a caregivers comforting face, looking for solutions. Even as I write this, I find the raw emotion of pain suppressed to prepare for the night ahead.

Bone Marrow and the next round

She had another Bone Marrow aspiration today. They are looking for Minimal Residual Disease. That indicator that the disease may be returning. After one bad experience without anesthesia, we have used it ever since. Her waking up from it is probably the most joyous portion of the day. She is a bit confused, remembering bits from dreams, and thinking she is some where else. She managed to tear through two packs of graham crackers and some juice when she was fully awake.

We used a wheel chair today at MD Anderson to avoid extra strain on her foot. The doctor was concerned if she was feeling bad today. Outside of being tired and the neuropathy, she was doing good. He decided to give her another two weeks to recover some more before starting the next maintenance cycle. It will be the same meds as this last round. We know that Nausea is going to be present and that neuropathy will continue to be an issue.

The Doctor wants to manager her health while also staving off the disease. There are a number of cycles ahead where he will decide if we want to skip or do the cycle. We still have another 1-2 years of cycles ahead of us. This is an ultra-marathon. Mental fitness is as important as physical fitness.

Other news

Our good friend Wes continues his battling with brain cancer. He is switching to a new trial that will help continue his battle. We had a chance to take him to the casino in Lake Charles this last week and spent the weekend with he and his wife Diane. We definitely ate too much food, but had a great time visiting and splashing around in the pool with them and other friends. Please continue to lift them up in your prayers.

Another friend, Katie Williams, got to ring her bell this week for her bout with Intestinal/colon cancer. Michele had the opportunity to go and be with her during her final treatment and be there for the Bell ceremony. I know the journey is definitely not over. We love you Katy and look forward to getting everyone back out on the dance floor soon.

Next… I know we are blessed and fortunate in many ways. I know of at least one other high school classmate fighting for their life this week. We also lost one. I look back on life now and realize how many “chapters” we have in our life. In my teen years, my life was spent around the roller rink. There were a group of guys that were a part of the “Rink Rats” in an era when the rink was cool! (I know.. let me live it here)

I found that the rink brought together different ages into one melting pot. We lost Byron Glover this last week. He was a little older than me. His was a name that was ever present in running around the northside of town in my youth. Yet, I had not heard that name in so many years it took me a bit to remember. Many people are critical of social media. This soul lifted to heaven this week would never have crossed my path again if it were not for it. I know many of my friends continued to know him as as adult. I have enjoyed the flashes of memories his story brought. May his family find peace in this tough time.

Finally, Cancer is calling another spiritual warrior that has been a presence in our life over the last 15+ years. As she battles breast cancer with God at her side, I want her to know that she has touched so many lives. We will be clapping and cheering you through the days ahead, as you have done for us. I will leave her name for another time as the journey was recently revealed. Keep her in your prayers as well.

And… it is hot!

Thank you for sticking with this blog entry! Texas has been riding some triple digit days that is very unbearable. If you work outside, please stay safe.

July is here. Celebrate the birth of the greatest nation in the week ahead and lets continue to make this world a better place when we leave it.