March is Multiple Myeloma Cancer Awareness Month!
Carolynn Richmond, Multiple Myeloma Survivor
How did I discover that I had Multiple Myeloma?
At the beginning of 2014 I was really struggling physically with low energy, heart palpitations and shortness of breath after walking up a few stairs, along with other minor issues. I “chalked it all up” to a four-month reconstruction going on in my home because of a burst water line during freezing temps. The damage was extensive, and the unfriendly dust was everywhere.
In April I visited my daughter in Arkansas. She commented that I didn’t seem to have as much energy and wasn’t as “spunky” as I normally was. I pretty much ignored it. The reconstruction was about complete, and I’d be fine. In May I stayed with friends’ teenage kids (in Arkansas), while they were out of town. The night they returned, I collapsed and was really ill. Very unusual for me to be “sick”. I had to stay a few extra days before I could drive home.
My daughter came home to Bartlesville Memorial Day weekend, 3 weeks before her wedding in Arkansas. Her first words when she saw me, “Mother when are you going to see a doctor?” A few days later, I went to a close friend’s house. When I sat down, she looked at me with tears in her eyes and said, “Carolynn, you look like ******, what is going on?” Never had I heard that language from my very devoted Christian friend. I knew then that I had to seek medical attention. The next day, last appointment, I was seeing my PA. Lab work revealed very severe anemia . . . I was hospitalized immediately, put on oxygen, and given 2 units of blood. Now to determine the cause for the anemia. And my daughter’s wedding was only 2 1/2 weeks away. It was another 3 weeks before we finally had a diagnosis . . . MANY tests, labs, procedures were necessary to pinpoint this rare blood cancer. During that 3 weeks, God’s Presence was felt and witnessed mightily. Appointments scheduled weeks ahead, miraculously opened up for the next day, I received 2 extra units of blood, so I could attend AND ENJOY my daughter’s wedding, a friend volunteered to chauffeur me to Arkansas as I was not allowed to drive. God kept paving the way . . .
A week and a half after the wedding, June 24th, 2014, we finally received the diagnosis of Multiple Myeloma (MM). I was devastated! Cancer???Me??? My profession is in the medical field. My entire life focused on healthy eating, physical activity, minimal stress, good sleep habits, etc. I was the picture of health at 62, or so I thought. My local oncologist recommended that I get a second opinion from a specialist for a treatment plan. MD Anderson Cancer Center in Houston, TX was and is the best fit for me. I have had 2 stem cell transplants, fall of 2014 and fall of 2017. I continue going about every 3 months to meet with my MM specialists’ team. MM, according to the medical profession, is an incurable cancer, but manageable. Treatment plans usually have to be tweaked every 18-24 months because the cancer2 mutates or becomes drug resistant. I’m currently in my 5th type of treatment at 7 years, 9 months since diagnosis. God continues to bless me and care for me. His faithfulness to meet my every need above and beyond is amazing. I know I can trust Him to continue carrying me on this journey!
How did my diagnosis affect my family?
Christianity and a strong belief in God is the foundation of my family. This anchor has been a necessity on this journey. Each of my adult children and spouses have handled the diagnosis differently. My mom was the most difficult to tell as we had lost my dad to cancer a short time before my diagnosis. I actually told her I had a rare blood disorder, which it is sometimes called, that was treatable, but not curable. I used diabetes as an example so she could understand it better at 86 years old. Overall, everyone was and continues to be very supportive; some will discuss it in-depth and some just on the surface. Today, at nearly 8 years post diagnosis, my family has adjusted to our “new normal”. This means sometimes, on group vacation, I hang back and take a nap while the others go do an activity; or at holiday time, I disappear into my room to rest for a while. Everyone knows this is ok and we are all thankful that God continues to extend our time together as a family.
What did I do to get through the difficult times during treatment?
Saturating myself with God’s Word, trusting in His promises and knowing He is walking by my side on this journey. Psalm 117:12 “She confidently trusts the Lord to take care of her.” Also, having many prayer warriors battling for me. I can connect with a prayer team or an individual in an instant and know they are “on it” whatever the need might be. Once, the technician stopped harvesting my stem cells because my blood pressure plummeted, and he was sending me to the ER. I asked for 15 minutes, texted my prayer team and 15 minutes later my blood pressure was back to my normal. He was absolutely amazed. This is one example of the many times how God showed up immediately . . . You go God!
I also “adopted” a theme song for each of my transplant times. The first was:
Whom Shall I Fear (God of Angels’ Armies) https://www.google.com/search?q=god+of+angels+army+lyrics&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari
The second was “Jesus, I’m depending on You”. These were my instant “go-to” in desperation and always brought me back to a positive place.
In addition, I read Psalm 91 a lot!
What does remission look like for me?
I asked my local oncologist this question at my last visit. There is no definite answer with a blood cancer that is very multi-faceted. Lots of factors to consider. For me, remission is when all the “myeloma numbers” are in normal range, my energy is pretty good, and I have minimal side effects from the ongoing maintenance treatment.
What advice do I have to offer to someone diagnosed with Multiple Myeloma?
You must have Jesus traveling this journey with you. This isn’t a journey I would have chosen for myself, but I can honestly say, even with all the struggles, it has been very spiritually rewarding. I KNOW God is ALWAYS with me and still has plans for me!
Set up a private webpage for communication with family and friends. I used Caring Bridge where I could make one post and everyone who had been personally invited could keep up to date and also respond. Their messages were very encouraging.
Learn all you can about MM. You have to be your own advocate, speak up, and ask questions for the best overall care and outcome.
Since MM is a rare cancer, it is important to see a MM specialist who keeps abreast of the advances in MM management and many times is working concurrently in research. This is the best approach to manage this disease. A specialist can confer with a team, come up with an individualized treatment plan specifically designed for your type of myeloma (yes, there are different types). They also have access to the latest medications. The specialist will work with most local oncologists so you can receive your treatment at home. Overall, I see my local oncologist monthly and the specialist every 3 months.
Know your insurance coverage!