Riding The Wave – Multiple Myeloma

Lone Tree, Lake Oroville, 2007

“To understand everything is to forgive everything.” – Buddha

I hear a lot of complaints from Cancer patients and Caregivers about how “people” don’t understand! Often they are either sad or angry about this revelation in their relationships. It saddens me, of course, with everything they are going through, to have this added point of view and undesired situation.

But here’s the thing… The only way they can TRULY understand is if they too have cancer or are caring for someone who does (at least that is the prevailing view with many cancer patients). Is this something that you really would wish on your friends and family?

Over time, you often see cancer patients splintering off into further subgroups. Its important for them to do this to further tweak their support group. Those with blood cancers complain that they wish it were a tumor cancer, “You can cut it out!” With a blood cancer you can’t, its everywhere. Thus, in our case, “Multiple” Myeloma means that the lesions show up in multiple places, i.e., there is no original site. This is why the radiologist who first did Dave’s CT scan deemed him with metastatic cancer of the spine, because he saw Dave with many lesions.

But one thing cancer patients have in common, no matter the type, is that which is “cancer”. The thing that strikes fear in your heart and makes grown men cry. I have found through my experiences with my mother and now Dave, I have no back off on calling someone on the phone who I heard has cancer and just saying, “Tell me, what’s going on?” On the one hand it breaks my heart and I really don’t want MORE, but on the other hand, I know all to well how alone and stigmatized they begin to feel. Talking to someone who has at least some idea of their fear, their pain, their despair, can be helpful. Certainly I hope so. Family and friends are often in the same place you are at the outset, they have NO IDEA what’s ahead. They’re scared and dealing with all their own emotions at the thought of losing you and that my dears is sometimes an untenable burden of huge magnitude. This is why you will often see cancer patients and friends and family scurry off into their respective hiding places. Its not to be mean or cruel, unsympathetic or lacking in efforts to understand. It is that which we each struggle with, some better, some worse, to pull it all together.

I must confess, I was not very kind to Dave early on, on one occasion. I won’t go into the details of it, its too painful for me. But I will tell you this, I realized in that moment, what MY PROBLEM was. I WAS TERRIFIED! I was so terrified, and holding it all in, being stoic, showing no fear in front of Dave or anyone else for that matter. When he was not holding up, what I believed, to be his end of the bargain, I snapped! Never mind that he didn’t know that he had agreed to anything! He hadn’t. But in my puny little mindless, selfish, fearful, moment, he was THE MAN GOSH DARN IT! BE A MAN! SUCK IT UP BUCKO! Geezus, I NEED YOU TO BE STRONG! I NEED YOU TO BE BRAVE. I NEED YOU TO HAVE COURAGE! I NEED YOU! I couldn’t do it alone. I needed him so bad to hold my hand and tell me it was going to be alright. He didn’t. He couldn’t. I hadn’t realized how angry I was. Angry for him getting cancer in the first place. Angry he was scared and frightened like a young child. Where was my husband?

I, I, I, ME, ME, ME…. I’m quite embarrassed to share that with you quite frankly, but I do so in the hopes that if you have been there, you will appreciate more, this difficulty we all face with our family and our friends. Dave and I joke about it now. When we think the other one is being unreasonable, we will launch into, “Oh its all about YOU! ME, ME, ME!” We laugh. Its so nice to do that in regards to a subject that so terrorized us.

“Misery loves company.” – John Ray

My theory on the “Misery loves company” quote is, not that you would wish others to be in your boat, so to speak, but when you are in that boat, it is indeed comforting to have others in there with you. There is a shared reality that is so profound, it’s hard to describe.

Having treated in Little Rock, where there are hundreds of MM patients there at any given time, I can tell you that the camaraderie was immensely comforting to me and eventually to Dave. The MM friends and other cancer friends I have made in this journey through social cancer websites and just meeting them locally has also been extremely fulfilling.

I have learned through this journey that I now have a new “set” of friends and you know what, its fabulous. Its not that my non-cancer friends don’t understand to the best of their ability, but it is indeed different. When I’m with them, I don’t want to impose our cancer journey on them, its a downer, at least from my observation. They become serious and solace in their listening to me in an effort to be sensitive. Or they say some cliche like “God only gives you what you can handle.” Do you hate that saying now? I know I do! But here’s the thing, they just don’t know. Its not intended to be demeaning, cruel, or insensitive, they just haven’t been there. It’s OK! I forgive them. I love them. They bring to me so much more as a whole.

When I’m with my MM friends, they get the cancer jokes and roll on the floor laughing right along with me. It really struck me one evening when I went out to dinner with a group of MM patients and their caregivers. Dave couldn’t go, he was “neutropenic” (white blood cells too low to be out in public – a lack of ability to fight off germs). Anyway, what really struck me was how we were showing photos of our families, talking politics, about life, our jobs and our disease as if it was just another topic in the conversation. It didn’t make everyone stop, it was just part of who we are now. It was so LIBERATING!

After that wonderful evening of too much food, laughter and wine, I realized how blessed I was to have these new found friends in my journey with Dave. How much I valued them and enjoyed them – “My Myeloma Buddies”. On the one hand I wanted desperately to get back to our life and put this behind us (a hopeful concept), and on the other hand, I have found that I really MISS THEM when I don’t talk to them or spend time with them once in a while. The freedom with which we can ask and talk about our tests and how we are doing is indescribable.

So what did I learn from all of this and what am I trying to say…? Give your friends and family a break. Don’t try to force them into an understanding that may be quite impossible for them to ever attain. You will only be disappointed in them and view all their actions with an unrealistic critical view. I look at it more as an opportunity to educate them. If they are unwilling to learn, so what, I have others who are near and dear to me who get it enough. I don’t need them for this. I hope they never have to “get it” quite frankly, though I often think I’m richer for the experience.

Let’s think of it another way. Parents who have lost a child. Can you really understand that if you haven’t? You can empathize, but really, can you get it? How about some who lost a parent, as I did at a very young age? I recently had a woman who also lost her father around the same age and she said to me, “But I didn’t lose him like you did.” What did she mean by that? Well, my father died in the service of his country. I suppose for some it would seem a hero’s death. For me, I just lost my Dad. He was MY HERO certainly, but he was my Dad! She lost her father to a heart attack. Now believe it or not, I have had this kind of comment said to me on more than one occasion and each time I’m somewhat floored by it. Their intention is so noble. That somehow the death of my father for me, was more profound than their father’s death for them, because of HOW it came about. OK, so here is my response each time, (no one-up-man-ship in loss)! “Loss is loss! Losing your father must have been so traumatic, I’m so sorry. We share in that experience.” But its a club. I’m in a cancer caregiver’s club, twice now. I have acquaintances and dear friends. I have cancer friends and non cancer friends. Co-worker friends. I have blogger friends and neighbor friends. I have family by blood and I have family I have collected and adopted my whole life. I have so much.

I know “who” is the right person to talk to about a given subject and who isn’t. I know who to ask for help with a certain thing, and who not to ask. Each of my friends and family have their unique gifts that they bring to my table. I don’t ask them or expect of them things that aren’t their strengths. I value their gifts.

Forgiveness is so often misunderstood. Its not to gift the person in need of the forgiving, though they are certainly grateful for it. It is for YOU. To forgive allows you to let it go and not become enslaved by an undesired emotion.

“No one experiences freedom until they stop pushing against others. The only thing that binds you is the pushing against that which is unwanted.” – Abraham

I hope that you can look at your friends and family in a different way and let them love you, how inadequate it may seem at times. Reach out to those who have come across your path and shared your journey. In them you will find the strength and support you need. Enjoy your family and friends in the ways you always have, ask no more of them than they can comfortably give. Chances are, if there are significant issues, they were there before cancer, you just didn’t notice it as much.

Tags: family, forgiveness, friends, understanding