I am into my ninth year of living with Multiple Myeloma/cancer – over 12% of my life. For me, it represents a significant amount of time.
And yet, the “time” component of the first sentence is considerably less important than the “living with cancer” component of this post’s first sentence.
I know that “living” is a changing dynamic/moving target state of being. I know through experience that living with cancer has involved both major as well as subtle changes to routines once thought to be set in stone.
Living as I navigate drug protocols in place to keep me alive has been a major change. The three protocols I have “lived” through have all come with a variety of side effects which of go a long way in describing the “quicksilver” nature of managing active cancer. Before cancer I never considered having a drug protocol to follow.
Currently I am on a protocol that has me getting two chemo infusions three Mondays in a row followed by 13 days of rest and then back to the Monday infusions. I am tethered to the hospital. The infusions make me sick for about 36 to 48 hours. The morning drive to the hospital for the infusions is a quiet one because I am in no mood to be social. Nothing like a chemo infusion to put a person in a pensive, surely mood.
Drug protocols have become a very important part of “living”. The current protocol is hard, nasty and makes me nauseous and headachy. I do not enjoy living while experiencing these side effects. Oh, I would be remiss if I failed to also mention the vomiting and persistent fatigue that accompanies the current treatment.
All of the above is quite normal I have been told when managing MM. I am not the only one getting infusions at the hospital on Monday mornings. It is usually quite busy. So my “living” has changed quite a bit as has the “living” of the others in a similar situation.
But living with MM/cancer is not just about all of the struggles that arrive with treatments.
Yes, it can be tough at times. But no, I would be short-changing the reality of “living” if I only focused on the difficult or negative consequences that have arrived or have been experienced over the years.
Not a one of us were given a choice about Multiple Myeloma. One day we got the “bad news” without being asked whether we were interested in a significant life change. Acceptance of what is, in some manner or fashion was/is quite necessary.
The definition of living changes. For instance, on Sunday I am so grateful that I have been able to survive. On Monday afternoon after the infusions, well, living is not so fun.
Some days on an early morning walk I look out towards the West and I see the mountains. It’s great. So happy to be alive. Then there are those days that I cannot even think of getting out to walk because I really need to stay very close to a bathroom.
Some days standing on a tee box, I am thrilled to be golfing and so darn appreciative of my life. And then there are those days when just getting up off of the couch and standing up is an effort.
Sometimes it is easy to live with cancer. Sometimes it is not easy and on those days all I am trying to do is survive while questioning the value of the effort involved in moving forward.
I can hardly remember what it was like without the cancer, without drug protocols, without the pills and chemo and hospital visits. Yet, I am so grateful that it has been long enough to where I cannot remember what “living” used to be like.
Living does not come with guarantees about parameters that will/could be a part of the journey. Living means whatever we want it mean. It looks however we want it to look given our circumstances and preferences.
I am being honest when I write that I never really thought that my life would include cancer/MM. But it does. And because of that, my definition of what it means to live or what “living” means has been adjusted, re-defined, changed or tweaked time and time again.
In the end, I feel lucky that I get to live. I feel lucky that I get to write these columns and that I get to adjust and adapt. I am ok with having “good days and bad days”.
What does “living” with MM look like? Well, I guess in the end for me it is hard to pinpoint but I sure am grateful.