All by ourselves, Part I

I know I won't be able to finish this, so this is part one. I have to go to the dentist. But I wanted to just share this.

We feel so very alone in so many ways we can't even begin to understand it ourselves, let alone explain it.

One way is this. Jim has sooooooooooo many issues. And I literally spend hours looking for some type of info, someone to connect with, someone who can say, "Hey, we made it and we can relate." I have joined yahoo groups. But there wasn't a Stem cell group specifically. There were a few cancer groups, but you have to spend hours searching for messages relating, if there is one. There isn't. Another of the yahoo groups has gone from a cancer group that people stopped connecting with, to a place for people to pick up prostitutes or something. Yeah, that was nice.

I have looked up blogs. The few blogs from people with SCT or Bone Marrow Transplant (BMT), which is the same thing, and we either cannot relate or they are dead. I'm not showing Jim those ones.

Even the Lymphoma Society forums don't have anyone who has gone through what we have gone through.

So after a few more hours, I found through the bone marrow foundation that they have a video called, "the new normal" for people who have gone through this. Well, long story short, we viewed all 8 episodes on you-tube, and they talk about "I knew I would lose my hair when I had my transplant...." Dah. How about having someone on those videos who lost their hair 5 separate times because they had 5 types of chemo before their SCT. But see, they don't really exist. So, no one has the amount of neuropathy that Jim has. No one had the setons, the years prior, the bowel problems, etc. etc.

A lot of SCT/BMT patients are patients that have a certain few types of leukemia where the only cure is a transplant. So, they didn't have all the years of sickness before. Some of them didn't know they were even sick.

So, all of that just to say, we wish there was one person out there whose story was as bad as Jim, so that Jim could get some hope that his life may one day have some normalness about it.

The new immune suppressant they have him on is causing more problems, problems he has because he's been so sick for so long.

One of the caregivers stories on the video was about "taking time for yourself" and blah blah blah. Yeah, I can do that in some way. But those care takers don't have close to the story. And nobody can understand unless someone else has gone through it. And it's not that we want to be validated. We just want to connect with someone who knows....who really really knows.

I love my neighbor kids, and they like to come over to swim, and they have for the last 2 years. The 2 little ones though, I have to be in the pool with them. And I was doing this as a way to tell them about Jesus, too. Well, I'm cleaning my window screens on the table (thanks, Johnny for all your help) and all 3 of them come over. Of course I didn't take them swimming, but I tried to explain to them about how things are a bit different. And they told me their mother told them I might be busy. Her father died of brain cancer this year, so "she knows." I have to call her and tell her that I will put a green circle up on the railing when it's good for them to come swimming, and it might not be green much this year. But will she really know? No, or they wouldn't have been over 3 times already.

I get so weary of trying to explain so that people know. And people can't empathize and such, but they don't know. It would be like me saying I know what it's like to lose a child. But I don't. No matter how hard someone could tell me, I don't know. But there are groups they can go to and talk with others who have. I just wish I could read one story, here one story, talk to one person.

I think it would help us not feel so very alone. And it would give us some hope.

Okay, I'm rambling now. I'm done. Time for the dentist.