Holding pattern

I feel like I’m in some state of suspended animation. Tim has been off chemo since May of 2008. When I think of that, I come to the conclusion that it’s some kind of miracle. Indeed, we had a lot of people praying for him/us in the beginning, and some who tell me they still are. I mean, this was a man who had an IGG of 10107 when we walked into his MM specialist’s office. He’d had strep sepsis when diagnosed and was hospitalized just a few weeks later, again, with an infection in his sinuses. His auto transplant did nothing. How do you have that glass bottle of Melphalan dripped into you(I guess it would eat plastic, it’s so toxic) and have it do NOTHING? His doctor flat out told us he was in real trouble after that. He thought he would fast track through all the MM meds and not respond well to them all. How did we wind up in this place where he has avoided treatment for over 6 years? There is some guilt about this, when you see others struggling so bad, or passing on. I just don’t understand sometimes what it is that gave us this reprieve. I am grateful, BELEIVE ME, we are SO grateful. It’s been so long now, I wonder if I’ve forgotten just how to live and function in that desperate place that we were in then. The one where I cried whenever I was alone, woke up in the middle of the night and went downstairs to cry. The place where every time you go somewhere, you wonder if you will ever be coming back together. I used to see my husband look around as we drove away from our vacations and know that he was wondering the same thing. I feel like I’ve become complacent. But, why not. Do I want to live with such crippling fear every day, so that, what?, I feel more prepared for when that other shoe drops? Are you ever prepared? I don’t think so. Financially, I think about how we will know when he can’t work anymore, and what will happen to us without his income. I mean, if we closed his business then, look what happened, he’s been fine and able to work for years now. How do you make MAJOR life decisions when you just don’t have a clue how things are going to go. I know I have a long way to go to catch up with things around my house and get myself organized and what am I waiting for? If he goes back on treatment and I am this far behind, it will be chaos for me. Am I purposely doing this, subconsciously thinking it won’t happen if I am not “ready”. I dunno. This is so strange. Now, his numbers have been creeping up very slowly. Do we have months? years?  until we need to go back to that nightmare? Everything is so unsure. People talk about planning vacations and things so far in advance. We’ve had to cancel vacations because he got sick. I don’t believe we’re going anywhere until we are on our way now. I don’t get myself too excited and don’t plan too far in advance. Just seems like a waste of energy to me. Our support system has shrunk in these years. His family is pretty much out. My sister moved to VT and my mom is not well, is losing her memory, so of course I wouldn’t expect any support from my parents while they are dealing with their own issues. Most of our neighbors and casual friends don’t even realize he still has cancer. They think he beat it. Would we tell Olivia when he goes back on chemo? Honestly, I don’t want her worrying. If he goes on Velcade and goes into another remission, something Dr. Durie said is very possible in his case, why get her so upset and scared. We are trying to keep her life as normal as possible. I try not to obsess about all these things, but it’s not easy not to “go there” at times. I’ve come to the conclusion that you just can’t plan for what you don’t know, but it is SUCH an insecure feeling being where we are. There may be some things you can get in order, but, there’s just not much you can do. When tragedy strikes, you fly by the seat of your pants and do what ya gotta do at the time. You put out fires as they crop up. Another MM wife posted today on a Facebook MM page that a family member ranted on to her about what a horrible week she’d had, lost her keys, she said, meanwhile this MM wife is dealing with her husband relapsing. Yeah, we don’t live in that place that “normal” people live any more. The day of that diagnosis, you are culled out from the group of people living a normal existence. You are now living in “life or death” reality. It’s something I wouldn’t wish on anyone. About 2 years ago, I walked to the post office with my dog. It had rained and the ground was wet. A man walked up behind us and my dog jumped up and got her wet paws on his slacks. I did not see him coming so did not react fast enough and apologized profusely. He went off on me, flinging the “f-bomb” and everything, in front of other people. (welcome to Jersey) I was stunned, and as he walked across the street, without even thinking, I called out, “if this is the worst thing that happens to you today, count your blessings.” I walked off thinking, I wish my life was that charmed that 2 tiny paw prints on my khakis was my worst problem. I live in fear of losing the love of my life, and watching my daughter’s world fall apart, every day. Everyone in my position looks at their mate and tries to imagine what it would be like without them. You don’t want to think about it, but you do it out of fear. You think, OK it’s been a lonely day, but what if he wasn’t coming home from work in a few hours? What if I was going to sleep alone every night, had no one to talk to about what happened today? I can’t even imagine. I like my alone time as much as the next gal, but, I get depressed if I’m alone all the time. I’m not content with my own company. I just can’t imagine my life like that. I don’t want to. I met a woman recently who started dating her husband when she was 15. They were together over 30 years, had 2 kids in their 20’s and he died. Had 4 or 5 different cancers. First one hit when the kids were young. Went into remission for 17 years and then MDS hit, probably from the chemo and radiation of long ago. Other cancers followed.
She told me she started dating 6 months after he died. I am not going to think about that stuff for myself, but, I can tell you this, I don’t judge her. She agreed with something I have heard other widows say. You start grieving for them while they are still here. She spent the last three years of his life in crisis mode watching him die. She makes no apologies for dating so soon and I don’t blame her. The loneliness must be crushing. I feel like I’ve gotten spoiled these last 6 years and I don’t want to go back there to fearing losing him every day. It’s still hard to have purely joyful moments with this hanging over our heads, but it’s so much harder when you are watching someone take poison, sweating out lab results every few weeks, and wondering how much longer your family will be whole. Every good thing that happens, you still think, is this the last time we’ll see this, be here, enjoy this type of event? Everything is bittersweet. Part of being grateful, is knowing things could be worse, and knowing there are many other people who have things so much harder, they would trade places with you. Everything is relative. Compared to them, we appear lucky, but, compared to most, we are living one of their top nightmares. The other day, a family in a neighboring town got a call. I have friends in that town that know this family.Their 19 year old daughter was killed in her apt. by an intruder, while she was attending culinary school in Fort Lauderdale. How do you go on? We went to Fort Lauderdale for our employee’s wedding last year. Liv loved it so much she wanted to move there. We have a daughter who might be going away to school in 2 years. I would not want to go on if this happened to us. I just could not imagine conjuring up the desire to get out of bed, ever again. When you look around at all the painful things going on in the world, jeez, what’s it all for? Seems that evil is winning out way too much these days. People post these awful pictures of abused animals on facebook and I am horrified so much that I can’t get the images out of my mind. The world’s gone crazy, and I find myself having a really hard time making sense of it all. I really do. But, I know that I have to find things to be grateful about. I’ve learned that if you don’t you can really get into a funk. I know that there are families like that one in the neighboring town, that can’t find a single thing to be grateful about. They will bury their baby and the world won’t ever seem right again. I have to continue to play those head games with myself and look for those little mercies God is granting us. They’re there, some days, you just have to look really hard for them.