Riding The Wave – Multiple Myeloma

“Communication is a continual balancing act, juggling the conflicting needs for intimacy and independence. To survive in the world, we have to act in concert with others, but to survive as ourselves, rather than simply as cogs in a wheel, we have to act alone.” – Deborah Tannen

Several recent conversations and postings with caregivers and cancer patients about communicating through their ordeal and it’s difficulties, responsibilities, overwhelm and some other unpleasant stresses and emotions have prompted me to see if I can address some of the finer points. I hope they don’t mind that sometimes our private or public exchanges give me ideas of topics to cover. And when they seem to come up repeatedly close together it seems as though a neon sign has been flashing and I’ve been just whizzing past it! 🙂

First, it is not unique. It just feels that way for those of us going through it at the time, because for many us, it is unique. It is something I have heard many times and a common thread for most of us, though not all. While I surely can’t resolve any personal or particular scenarios in your situation, perhaps you will find something in this that you can adapt to your dilemma. (This isn’t really for those of you who choose not to tell anyone your sick. It’s for folks who do and are overwhelmed with the concern and level of communication barreling in on them.)

“Communication is a skill that you can learn. It’s like riding a bicycle or typing. If you’re willing to work at it, you can rapidly improve the quality of every part of your life.” – Brian Tracy

We have friends, family, co-workers, neighbors and others we are associated with in our life and suddenly we are in a crisis unlike anything we’ve experienced. We disappear from our usual routines in order to try to manage what is happening. Big changes are already taking place that are taking us somewhere we never wanted to be. All the usual emotional stuff you might expect in this crisis is going on and all who know us and love us want to be in the know. They want us to know they care and are interested. They hope to hear from from us – directly. How can we possibly manage it? It’s a full time job in and of itself, and simply not the priority, even if we want it to be. Even if we don’t mind telling everyone and they are willing to listen and learn, there simply are not enough hours or mental energy to cope with it day in and day out.

I remember in the first days of arriving in California, sitting in Dave’s hospital room, finally calling his parents and a few close friends, the grapevine was on fire and my phone began ringing incessantly. At first, I was happy and relieved that so many amazing and wonderful people were reaching out desperately to offer support, what understanding they could, and any help they could give, if only I could think of something! In a matter of days I quickly realized I was in trouble. I was on the phone constantly. I couldn’t remember if I told this person this or that. Where they were in the story, as it was changing rapidly. I also was in constant hunt for an A/C plug to keep my cell phone charged and in a place I could also talk without disturbing others. There was a three hour time difference with most folks as well. In a word, it was INSANE!

“Communication is about being effective, not always about being proper.” – Bo Bennett

I knew about Caring Bridge. But I wasn’t sure how Dave would feel about it. I don’t mind putting my stuff out there, but he is an exec and more private than me as a rule. But I needed an efficient way to keep folks up to date and informed, not 2nd and 3rd hand, but from a direct source. I had to correct several who called about what was going on, they had heard from so and so, through so and so, and was way off the mark. Not their fault of course, but you now how the grapevine works. Little alterations over time and it suddenly doesn’t sound like anything it started out being. So I set up the site, which is private and can be password protected. Only those you have shared the link and password with can have access. You do need to qualify to those you share it with whether or not to share it, if that is your desire or not. I had the opposite view, and told them to pass it on to all our friends and make sure they had it. It just depends on what you want to do. There is no wrong answer here. It’s very personal, what you are going through.

Anyway, it was THE BEST THING I did in the early days. It really saved me. Dave was touched by all the guestbook entries. Family and friends all over the country were immediately and happily, “in the loop!” I stopped running my battery down and was able to stay focused on the job at hand. Making entries became something I looked forward to each day. Folks signed up for email alerts for whenever I posted. After that, when I talked to my friends they were all up to date with the correct information and could ask more specific questions that were appropriate or we could simply talk about something else. THANK GOD! It was actually a joy to talk about other things.

So there can be some inherent problems however to consider. First of all, too much detail about vomiting, diarrhea, constipation, pain, etc., can make it hard for folks to read through. Dave didn’t want his work colleagues to be privy to the ugly side of all of this. He didn’t want photos of him with no hair, or discussions of his breaking down, sleeping incessantly, or us fighting about something. So I was very conservative and guarded in the details that I shared. It wasn’t hard really, but I was mindful of it. Dave understood the desire for people to be in the loop and my need to manage it. So we had a few bumbles here and there, but for the most part, he was pleased with everyone being informed and up to date. It allowed both of us to spend little time talking about it and more time talking about them and other things going on.

A public blog is a bit different because anyone can have access to it. So you may or may not want to choose that. It depends on your own personal situation. And realize too that your situation, desires, and need may change. Nick van Dyke comes to mind, and there are many others, who chose to chronicle his journey in a very open and personal way and I know for a fact it has helped so many in their struggles.

“Communication leads to community, that is, to understanding, intimacy and mutual valuing.” – Rollo May

But I will tell you that it is simply a communication tool. That is all it is and it is available to you if you so choose. A way to be efficient and better manage your time and information. With the advent of the world wide web, we are able to do it better and more efficiently than ever before, but there are safeguards we need to put in place and standards we need to consider.

If this doesn’t work for you, then assigning someone the job of being your communicator is another option. Send one email, timely updates, again following basic understanding of enough information but not gross unpleasant details beyond what is necessary. That person can then forward it on to an email list of family, friends and co-workers you are comfortable with. Remember your audience and what is appropriate. Nick for instance, talks a lot about science and technical things. Don at Myeloma Hope puts up his labs regularly. But if you are just keeping friends and family up to date, those things would be hard for them to absorb. So lighter updates would be in order. General descriptions of your next steps and how you are doing.

“Email, instant messaging, and cell phones give us fabulous communication ability, but because we live and work in our own little worlds, that communication is totally disorganized.” – Marilyn vos Savant

Understand to, that if you don’t find a way, there will be a void and it will get filled. Generally not with much accuracy. So take the bull by the horns and find a way to manage it, handle it, and be in control of it. There is little else you have control over, so enjoy this little respite from all that is flying around you.

Once we were out of the woods so to speak. I ended our Caring Bridge site. I prepared people in advance that we were doing well and after Dave’s last check up, post tandem transplant, I would be signing off. I wanted them to prepare as it had become something we all enjoyed – keeping in touch. Dave and I were both feeling like this thing, this whole Myeloma thing, was no longer defining our life and we felt that it was time to close that chapter and truly move forward. Of course, he went to work and then I unexpectedly and profoundly floundered. Lost in what I was to do with myself now that the sheer adrenaline moving me forward every day was just not there anymore. I was no longer in a caregiving crisis and in fact had lost my job! (A nice problem to have, admittedly.) I struggled with whether to do a public blog. It was pretty scary actually. I found that I missed writing to everyone, and now I wanted to write about my thoughts and our experiences. I also had more to say than was appropriate for the audience on Caring Bridge. In fact, I didn’t tell them. My reading audience here is not my family and friends. I wanted to connect with you. Those of you going through this mess in Myelomaville. You, I knew, or hoped, would understand how hard it is. It wouldn’t so much be about Dave, as it was FOR me. What I was feeling and thinking. I didn’t even tell Dave about it for almost two years. He inadvertently found out through little slips in a conversation. His eyes got pretty big and I gave it a discounted sort of explanation. He now refers anyone to my blog where appropriate. He’s very proud of it and of me. It was a good decision for me. I just hope this helps some of you to figure out how you can make the communication to those who are interested not so arduous. Remember, it’s just one of several tools at your disposal. Good luck!

Tags: caring bridge, communication