20230511 – Where Do I Go from Here?
Well, here I am, in the wee small hours of the morning, about 4:15 AM, in the middle of my current bout with what I call dexsomnia, a steroid induced insomnia that I deal with weekly for about 36 hours, as a part of my current cancer treatment regimen three and a half months after my diagnosis. And I’m wondering, again, where do I go from here? I can’t get it out of my head until I deal with that question every single morning, and most of the nights like these, when I can’t sleep. I have to face the fact that I have incurable cancer, I accept that I have to live one day at a time, in the present, and I choose what I will do on this day, to the extent that my body permits.
The best thing I can do is start by counting my blessings: that last night’s wish came true, for one more day with the love of my life; that my cancer may not curable but it is manageable and with proper and aggressive treatment it can be dealt with as a chronic condition like diabetes that I can live with for years; that the treatment will be hard on my body and possibly aggravate my other chronic conditions but I can learn how to live with each twist and turn; that I have family and friends that care about and pray for and encourage me, and with whom I can spend every day no matter where I am; that I still have goals, a great hobby, and even an abbreviated bucket list that give me purpose; and that I have neighbors in my new HOA back home that depend on me.
When I look back on my post in August last year about committing to a new path (20220826), little did I know that new path would take me in an entirely different direction than I ever anticipated. That old adage, life happens when you’re making other plans, turned out to be exactly right.
Just one month later, in September, my semiannual blood test which was part of my regular diabetes checkup with my PCP, came up with some very disturbing results. Fortunately, my PCP is one who likes to get to the bottom of things quickly and immediately started testing for various possible causes of what he determined to be Pancytopenia. He found a number of chronic conditions had appeared, but none explained the blood issues. By November he had done what he could but determined I needed to see a hematologist, and in Grand Rapids that wasn’t going to happen until late winter or spring.
We decided to head for Texas as usual and he suggested we see if we could find one there we could work with. We arrived on December 6th and on the 9th I was in my new oncologist/hematologist’s office who had the same philosophy as my PCP, let’s get to the bottom of this as quickly as possible. After six weeks of tests and a bone marrow biopsy, we waited in his office on January 27th for the diagnosis. Here is how that day and weekend went. (20230129)
And now I know more specifically what I have, exactly what treatment plan I’m on, how my body is responding to that treatment plan, and what the possibilities are of living with this disease.
I have Indolent (Smoldering) Multiple Myeloma (MM) (early and often undetected at this point), a cancer of the plasma cells in my bone marrow that causes them to produce immature and insufficient numbers of blood cells, and damaging proteins that attack my kidneys and bones. It is not curable, but it is manageable with the right treatment plan that can get me to a non-progressive state for an indefinite amount of time ranging from several years to possibly decades. We caught it very early, I was and continue to be asymptomatic except for my blood tests, and there is no bone or kidney involvement, two very critical points. I’m on a highly targeted immunotherapy program that tags cancerous plasma cells and helps my immune system accurately identify and kill them. Most of my blood, enzyme, and protein counts are normalizing with the most important white cell, red cell, platelet, and hemoglobin results normal or nearly normal again. I am currently autologous (self) stem-cell transplant eligible but may not remain so due to my other chronic conditions. However, I may not need the transplant after I complete this eight month treatment regimen I’m following. Another bone marrow biopsy at that point will determine the degree of response I got, and what my maintenance program will be.
My choir director lost her mother to MM not long after her diagnosis. A close friend was diagnosed in November but has bone and kidney involvement, is not transplant eligible, and is trying different treatment regimens, which haven’t worked so far. Another friend lost his wife to complications from MM after fifteen years, and a neighbor is in good health and has been living with MM for more than ten years. I’m on one of the newer and more effective treatment plans developed in recent years, so my outlook is promising.
Sorry for all of the detail, but that’s the type of person I am, very detail oriented and analytical. My oncologist loves that I’m this way, thinks I’m one of his best patients! Good, I’m not too much of a pest then, at least not to him. And I don’t mind sharing if other MM patients read this and are helped by it.
And that brings me back to the question I wake up to every single day, despite knowing what I now know and continue to learn about this new normal for me; where do I go from here? First I count my blessings. And occasionally I allow myself a personal pity party, and maybe even a good cry, because it’s the healthy thing to do, it clears out some emotions that may otherwise cast a pall over my day. Then I grant myself a little grace, choose how I will live today, roll out of bed, put one foot in front of the other, and start down today’s path. I guess I’m learning to answer that same question every day by living life …
One day at a time … – Pops
Love you big brother ❤️🙏
Right back at you brother!
Bless you my lifelong friend. I am in your corner, thinking of and praying for you always! Take good care of yourself and know that I am here for you if you need anything, ever! You mean the world to me! ❤️ Stay strong!
As you do to me! So happy to have you in my corner! What I need most I already have, the support and encouragement of my family and of lifelong friends, you and the Gang. Being a cancer patient I can really relate to what your sister went through and how much strength it takes to make treatment decisions that you know are going to take a tremendous toll on your body. I’ve learned quickly that facing reality every single morning, counting your blessings, and taking that next step are things you don’t do alone. I couldn’t be more blessed than I am with the family and circle of friends I’ve had in my life.
I have all the normal responses to this. But what I will offer is hugs & love, after a big OH NO!
You are the pillar of our Gang, I’d like to keep it that way!
Thank you so much for your support and encouragement Pam. I never really saw myself as the pillar but more of a cornerstone to your pillar! But don’t worry, I’m planning on being around a good long time. Even my oncologist thinks I have a great attitude and that’s a big part of the battle.
I will be praying and thinking of you as you go through this new journey. Stay strong and take one day at a time..Hugs.
Thanks Karen. There is so much strength and power in the love and support of family; I feel it every day.
Terry, so good to hear from you but sad to hear about your diagnosis. My father had MM for years. I pray that your disease gives you as much time and life as he was given.
Laurie, thanks so much for connecting and sharing about your dad. I knew he had some health challenges, but didn’t know he was dealing with MM. With the newer courses of treatment I’m optimistic I’ll be around for a good long while. But the support and encouragement from family and friends like you and Wendy is even more important to me than the treatment. Thank you!
You don’t know me, Terry’, but I am the mother of one of Craig’s good friends from high school, and I also have MM. I was diagnosed on January 1, 2016 at St Mary’s in GR. Your writings have really resonated with me and brought back memories from the first days. It’s quite the interesting disease and it’s also part of the club you never aspire to be in. But here we are! There are two great Facebook groups that are like a support group. One is general and when too many Christians starting posting scripture and referring to God, that “sort of talk” was no longer allowed and a new group started for Christians. If you’re interested, I’ll be glad to let you know. Kim has my number if you ever want/need to text! You are on my prayer list. So grateful to have the Lord with us on this journey.
Hi Cindi, thanks for posting and yes, I’m very interested about the Facebook groups. Kim mentioned you also were dealing with MM when I got my diagnosis in January. I find it surprising just how many people I know who have MM or know of someone who does. It’s been a big learning curve understanding this disease and the treatment options, and it’s comforting to know that my reactions are pretty typical. I’ll check with Kim for your contact info. Thanks Cindi!
Hi, Terry, As my sister Laurie said above, it is great to hear from you, but so sorry to hear about the diagnosis! Strange as it sounds, after 5 years of treatment for MM at the Cancer Center, the doctors couldn’t find any MM in my dad. Maybe it was a miracle?? What you are describing sounds very much like what our Ryan has been dealing with for the past year, (his diagnosis was AML (leukemia)) and continues to deal with the very long “recovery” process following his stem cell transplant. Terry, I will add you to my ever-growing daily prayer list, hoping for the best possible outcome for you. Also, I am sending you hugs and wishes for good things for you. Love, Wendy
Thank you Wendy. Your dad’s story sounds like a real life miracle to me, and I pray Ryan experiences a complete remission with his AML. I’m very hopeful that with my early diagnosis the immunotherapy alone will get me to a place where the cancer can be controlled for a long time because there are some risks for me with a transplant, even though I’m eligible. I’m so grateful every day for the support of life long friends like you, this road would be so much tougher without all of you.