By Andrew Michnowski – Patient
This article is not my CLL journey; this article is our journey. Mine, my wife Michele’s, and my children Jacob (and Sabrina), Rebecca, Emily, and Mathew.
“It is most probable that you have Chronic Lymphocytic Leukemia (CLL); however, I want you to wait 6 months to take a blood test to confirm. During this time, I want you to bring your stress levels down.” Hmmm…you have cancer, do nothing, bring your stress levels down. All of this made no sense. Why do nothing? How do I bring my stress levels down after being told that I probably have cancer?
As we left my hematologist/oncologist’s office that day, Michele was in tears, and I was numb. Time to do some research and become educated. Leukemia, cancer, blood cancer, no cure. Words I feared being told by a doctor for my entire life. Words Michele’s ears often heard from me in the past. The difference is that in the past it was me diagnosing myself based on pain, but this time it is a reality.
Somewhere during our journey, to this point, I was faced with one of the hardest things I had to do in my life: telling my children I most likely have CLL. I waited until we were all together to tell them in person, as they were in different parts of the country. After tears and explaining what CLL is and what to expect, everybody seemed to handle it well.
June 9, 2023. Another difficult moment in my life. This day also happened to be one of the most joyous days of my life. Jacob and Sabrina’s wedding. The difficult moment, one I will never forget, is breaking down in tears holding Becky and Emily during Sabrina’s father-daughter dance. All that went through my heart and mind was “will I ever get to have this dance with my daughters?”
Unfortunately, in September 2023, after a year had passed from when I first suspected it and diagnosed myself with CLL, a slow-progressing, non-curable, but treatable cancer, test results confirmed my diagnosis. I had some favorable and some unfavorable markers. Although our journey had begun about a year ago, it was on this date that it became official.
The results were confirmed by my CLL specialist, Dr. Rhodes. We spent over an hour at her office that day, mostly talking to her. She was honest and blunt when telling us about my unfavorable marker. Handing my wife a tissue after seeing the tears in her eyes, she basically told us there is nothing I can do about it. At some point I will need treatment, but everybody is going to die from something sometime, and I will probably die with CLL, not from CLL. I need to accept that I have it and live my life. Some may not like to hear this from a doctor and think it is insensitive; however, I appreciate her honesty and took her advice.
Usually, I go to the doctor alone; however, every six months Michele comes with me in person. I also bring the rest of my family in my heart and have them represent me by putting on my Lehigh hat so my daughter Emily is with me, my Firefly Aerospace shirt for support from my daughter Becky, and a bracelet I got with the names of my family, so my sons Jacob and Mathew can be with me too. I also take rocks which represent each member of my family to each visit.
“MICHELE, MICHELE, CAN YOU COME?” A very often used call in our house. No, there is not a bug; no (most of the time), I did not spill anything or make a mess. I am calling her to see if a mark on my body is or can be CLL-related. Yesterday was a big bruise on my leg; other days it is usually a bite or mark on my skin, which I need to have checked out by a doctor. There are several other symptoms I have not had yet; however, at times it is very stressful when I feel off, wondering if it may be the beginning of new CLL symptoms. It is now about three years since I was officially diagnosed. Since CLL does not have a cure, is slow-moving, and there is no way to know how long a treatment will be effective, I have not started treatment yet. I was told I will not begin treatment until I become more symptomatic. Since being diagnosed, Michele and I still wear a mask in crowded areas, have not been to a concert or sporting event, and are very cautious around people. We find it funny that when we are out, whenever someone either coughs or sneezes, Michele and I give a dirty look and then look at each other, jokingly, but not without both of us thinking “How dare someone cough or sneeze in public?”
Every six months I have blood work done and see my specialist. During the month leading up to this appointment, it is a very stressful time, wondering if my WBC and Absolute Lymph Count went up, if my platelet count went down, etc.
Although it may seem like we are not living our lives, we are. We are just more cautious when we do. We enjoy going on vacations once or twice a year. Going to small towns such as Haddonfield, Princeton, and New Hope. We enjoy taking walks after dinner. Most of all (which we always enjoyed) is our “Pajie Time.” Pajamas and a movie or series or sporting event on the couch. We used to always eat dinner at the table; however, now that we are basically empty nesters, we often “couch it” and eat dinner on the couch. We do the things we always enjoyed.
After all, it is not what you do, it is who you do it with.
I am very blessed for such a loving wife, who supports me through this journey. I am also grateful that every night at least one or more of my children FaceTimes us to talk. Tonight Mathew was my favorite, because he called my phone. Jacob and the girls usually call my wife’s phone to talk to both of us. When she does not pick up, they call me, and when I answer, instead of saying hello, I say “Oh, I’m second choice.” My favorite times are the few times a year all four of my children are home. We have family game night. These nights are the ones that I always hold in my heart.
On most days, I do not feel like I have cancer, and do not think about it. The Facebook support groups have been very helpful in educating us and teaching us to have a more positive outlook on the diagnosis. Although some may say I may be spinning this to be positive. I truly feel like there are some positives in being diagnosed. Don’t get me wrong, as I wish I never had this, but here are my takeaways:
- I feel like I have become a better person in general.
- I am much more of a patient person.
- At times when I used to lose my temper, I now, for the most part, put things in perspective and remain calm. This helped me reduce my stress.
- For the most part, I have learned to live in the moment, not the past or the future.
- I eat a lot healthier.
- I exercise more.
- I have learned to listen to my body; if I am tired, I take a nap. If napping and cannot fall asleep, I get up and do things.
- My dog Luna helps me by waking me up to play. I feel like I laugh and smile more; Sabrina even got me to dance on a TikTok video (one time).
- Occasionally, I will even joke, saying it sucks for the mosquito who sucks my bad blood. I had my daughter laughing the other day when she asked me what her Zodiac sign is. Since my birthday is in July, I told her I claim Cancer.
- I appreciate the little things in life more, and I try to laugh, smile, and find one thing that makes me happy each day. With Michele by my side, all of these are easy to do.
Perhaps these changes will make me live a longer life than I would have if I did not have CLL. For now, this is “Our Journey,” and it is just the beginning. Sadly, our journey now includes cancer; however, gratefully, our journey is as a family together, bonded forever.
