The burden of knowing

Just this morning, I set up a “my chart” account for Tim through the hospital where he is treated for his MM. I had received an e-mail that prompted me to do so. And, I saw his latest test results, which we were due to find out about tomorrow. His numbers did not stay stable in this last month, as they did the month before. They went up. Not drastically, but, up. Now, what to do with this information. Do I tell him? At his last appt., Doctor V changed his mind about starting the Ninlaro and said he might be able to get through the holidays first. But, he had us schedule another appointment in a month (now) to keep an eye on things. Add to this scenario that Tim has been experiencing some pretty nagging neck pain and other general aches and pains. When last he had MRIs done, they found spinal stenosis in his neck, and I hope this is just a flare up of that. I worry that putting off treatment might not be a good thing. It’s so hard to go to these appointments, as anyone with cancer knows. Tim seems so calm, even his blood pressure is always perfect, but, being handed those lab reports and reading those numbers has got to get to him. Now that I will be able to see his reports prior to his appointments, I have to wonder what’s better. Do I let him go as long as possible not knowing about it but wondering, or do I tell him and get the suspense over with? I suppose the best thing to do is just ask him, but, it’s not a black or white area from my perspective. Obviously, if the news is good, telling him sooner rests his mind just a bit. But, if the news is bad, then I feel like I am robbing him of days that he would not know that and the not knowing would be better than knowing sooner. He’s not dumb, if I start telling him before appointments when the news is good and then withhold the info and wait until his appointment comes around for bad news, he will figure that out quickly.

It’s a burden to know things about MM and his health that he doesn’t. He has made it very clear that he doesn’t wish to know about it, but, when it comes down to making treatment decisions, he has to know the facts. It’s heartbreaking to have to tell him some of the things I know. It’s scary and unfair to have to hear those things. I know that the option of having an allo transplant might be brought up to him soon. Our docs seem to be pushing them again. We were tied up in knots about the decision in late 2007 and early 2008. We don’t look forward to being faced with it again. And, a woman from my support group, Mary, just died having one done. She was home and doing pretty well and then, whammo, this crazy thing I’d never even heard of cropped up and she was gone in days. The docs said that what transpired is very rare, but, it’s just one more scary thing to know about allos.

I can tell a difference in Tim’s emotional well-being lately. There are a lot of things weighing very heavily on his mind. Relapsing, of course, is probably the hardest of them. He is also having a hard time dealing with our daughter being out of high school and away at college. Then, his friend, Ron, died suddenly, and, he’s stressed about work and finances. Owning your own business is tough, but, we don’t know how long he will be able to work and what will happen to us financially when he can’t anymore. The kid that works for us does not know what he is going to do about going to college full time or not and is leaving us hanging. There is just so much going on right now and both our heads are spinning. It’s hard (read-impossible) not to worry what the future holds for us, and not the distant future alone, but the immediate future too. I had to try to calm myself down about it all recently, because, once again, I was just making myself crazy over things and I have no way of knowing how long he will be able to continue working. I always feel like I should be doing more to prepare for that, but, what? I’ve quoted my sister before with this phrase and will again……I will just have to jump off that bridge when I get to it.

Meanwhile, I am making strides, albeit small ones, in trying to take better care of me. I saw a nutritionist about addressing my gut issues and found a therapist. Had my second appointment with the therapist 2 days ago and I like her. I scheduled some massages I had gift certificates for, and am trying to do a better job with myself, in general. It’s a long time coming and I am not feeling great  these days, so, I really have to light a fire under my ass and get moving in that department.

I am adjusting to my kid being in college. It’s been a rocky start. We are now at 2 lockdowns and 2 evacuations. Liv’s experience at school has not been as great as we all hoped it would be. She is making friends, but, misses her friends from home a LOT. One of the things that worried me about her attending a private school, and one in Jersey for that matter, was that she was going to be surrounded by snobby, rich girls. Well, she is. In fact, one of her friends is thinking of transferring out after this year because of it. There is no shortage of them there, for sure, and I had to remind her when we dropped her back off the other day after the Thanksgiving break, that she will continue to meet new people and make more friends, and find girls who are not snobs. She wants to join a sorority next semester, so, hopefully she gets in and that helps her find more girls she has things in common with. I cannot believe it, but, in 3 weeks, this first semester is in the rearview mirror. It went fast for Tim and I, though Liv said she feels like it’s been forever. Of course it does. She left her family, her home, her friends, her dog, and ALL that was familiar to her. It’s like being in exile, for goodness sake. But, we trod along, and hopefully, things continue to improve for her. She has friends and is going to parties every weekend, but, she’s been sick a lot, and I can tell that some of these girls are not people she would hang around with, under normal circumstances. OH, and a boy that she has gotten to know in her dorm asked her to be his date at a dinner for the lacrosse team he plays on at some fancy mansion. YIKES. And so it begins. She has not had a real boyfriend yet, so I think some of this attention she’s getting from the boys is a good thing for her ego. I am, all at once, glad and a little scared. But, it’s better than them not paying her any mind, I suppose.

So, that’s the update. The days fly by. I worry and try to force myself to be productive despite this funk I always seem to be in. I am successful on some days. Gotta try to make the holidays as happy as possible, especially for Tim.

Happy holidays to all !!!