Road Warrior Down

Every cancer patient remembers the first time they heard the “C” word applied to themselves. Everything stops. Priorities change in an instant. You start rethinking what is really worth fighting for; what’s truly important.

My day was June 25, 2015. In the previous couple years, I had been tested for this or that, and a discovery of Myasthenia Gravis had been made along the way. In October 2014, though, I had developed some significant pain in my lower back. I had been an over-the-road truck driver for about twelve years at this point, so the doctor’s assumed it was related to that. Truckers are notorious for back pain because of the job we do, not to mention bouncing up and down in that seat for hours at a time. So I was given some pain medications for a pulled muscle and sent on my way.

The pain increased, though! Twice more I went to the emergency room (when I was home in Omaha) and they gave me different medications, especially after I did take a little fall out of the truck in April of 2015. Finally, on the third visit in May 2015, somebody decided it would be a good idea to get an x-ray!

Receiving a diagnosis of multiple myeloma

They discovered a compression fracture on my T6 vertebra. The vertebra was in a million pieces. A PET scan showed a lesion there which had literally squeezed the life out of the vertebra, and more tests were done. There was a smaller lesion on the T10 vertebra, not causing any trouble. Early in June, my legs started to go numb and stay that way. They were not paralyzed. There was just a constant feeling of pins and needles (which continues today to various degrees). I was hospitalized and more tests were done. On the day, I was lying on a hospital bed when about 6-7 medical professionals entered the room. My daughter and son were there, along with one other friend. The head doctor there announced the finding: Multiple Myeloma!

Silence ruled the room for several moments. The doctor had told me his suspicions the day before, and I had spent a good part of the previous night online looking for any kind of information. I had never heard of it, and the only way I knew it was a cancer was the “-oma” suffix on it. Information was sparse. Under “prognoses”, there were more questions than answers; I could live two weeks or twenty years. There was a great, gaping unknown ahead of me. Obviously, trucking was out the window. This road warrior was down permanently. One of the ironies was that just six weeks before, I had been given a clear physical allowing me to drive for another two years! On that physical, though, they are only concerned with driving ability, not lab work and all that goes into a full work up. Now here I was, wondering what the future held.

Where do I go from here?

As the medical team began to describe the symptoms that had allowed them to make the diagnosis, all kinds of things suddenly made sense. I had been having episodes with dizziness. I couldn’t seem to get enough rest, no matter how long I slept. I was constantly thirsty. My mind had not been as sharp lately as it usually had been. It seemed the smallest thing caused incredible weakness in my muscles - but this can also be Myasthenia Gravis. We found a lot of mirrored symptoms, which was one of the reasons it had been so tricky to diagnose. I began an instructional period on “M” cells, percentages, platelets, etc. The wind had definitely been taken out of my cells. Where do I go from here?

With all the activity going on, it was a couple days before I woke up one morning and realized that I am a cancer patient! It’s me; not someone else. I am the one. I was suddenly completely shocked and sat there for about an hour before the nurse came in. (Hospital stays don’t give us much alone time!)

Could I work? Obviously not in my chosen profession, but can I work a regular job? Income would definitely be affected. I needed someone to say something officially in writing so I could either go look for a job or apply for disability. There were many sleepless nights.

Adjusting to my new normal

My whole world changed. Suddenly, I could no longer do many things I had done before. I had been losing abilities, etc. for some time, but had been “making myself” muddle through because there was no reason I could not do this or that. Now there was, though, and I needed to be careful. I had no energy, and this has continued to decrease over the course of the illness. I learned about chemotherapy, which had always been for someone else before! We started with a generic one, a shot and some capsules once a week.

The word “infusion” became part of my vocabulary. Since that time we have been through four different courses of treatment. Doctors talked about a stem cell transplant, but we couldn’t “get the numbers low enough” to allow that. So we have now switched to “helping me maintain a quality of life” until… whenever and whatever the end is. In announcing this, the specialist was kind enough to say: “When you die, multiple myeloma will be the cause of death; and I wouldn’t expect more than three years.” My daughter was standing there in the office with me and both of us just stared at her. (That “three years” is coming up 11/7/2019!)

Cancer impacted my whole family. My daughter had never before had to “take care of” her dad. My son, with whom I shared an apartment at the beginning, became almost a caretaker, watching my every move as I stumbled around the apartment getting used to not having the mobility I had enjoyed before. I suffered several falls before I adjusted to slowing down! Our apartment was on the third floor of our complex, with no elevator - so obviously one of the things that had to change was a place to live! We managed a little over a year, then a friend offered his second bedroom. It is tiny and cramped, but is one of those major adjustments I have been forced to make. Of course, my friend has also had to make that adjustment! I thought of getting my own place, and everyone - family, friends, medical staff - said absolutely not! Loss of independence is one of the toughest battles. At least I can still drive my car! I am only 60, but I have to be around people in case something happens - especially now that cardiopulmonary issues have been added! The multiple myeloma has weakened nearly every system in my body. Skeletal, of course, but nearly everything else as well.

Family and friends mean everything

Perhaps the biggest thing I have discovered is how many people really care, and this is a great blessing! In our society, this is rare because we are all so busy keeping up and paying bills, we have challenges taking time to really say, “Hey, how are you? Is there anything I can do to help?” - and MEAN those things. I don’t have a big physical family. My younger daughter lives here in town. Both my sons live here. One has a young family and is always busy. The younger one is following in his dad’s footsteps, driving a truck over the road! But I have been blessed with a core of truly good friends and brethren in my local church - and that, too, is family! I have to say that I believe I have a fantastic Hematology-Oncology team, even though it’s at the VA hospital (Department of Veterans’ Affairs). For all the bad press, all the doctors do come from other hospitals in the area, and have access to some of the most advanced cancer care in the nation. We’ve been together for a while now!

Having said all that, most days I still feel very much alone. Even the best friends get tired (either in reality or we see it that way) of hearing my daily battles. Every day is the same. Something always hurts; some days several things hurt at once. There is no such thing as a “pain free” day. All we can do is take “one day at a time” - all of us - but for a cancer patient this has much more meaning, in my opinion. I think it’s because we have so MUCH time on our hands but we don’t know how much time we have left, and we can’t really expect those around us to drop their own lives. All we can do is maybe reach out to others going through the same things - because nobody else can understand unless they have been or are going through this. Add this - that multiple myeloma is rare, and therefore hardly anyone even knows about it. SO, I often get these looks like I really am just making it up! Try to explain the disease - and eyes glaze over as I try to talk about platelets (remind me what those are again?), the function of RBSs (remind me from high school biology what their function is again, and why it matters that they are mutated?). Only the most heroic friends will hang in there for even a cursory explanation of what an MM patient is dealing with!

So if there are others out there - welcome! We are not alone! I am not the only MM patient in the world! Amen!