Multiple Myeloma is technically a terminal diagnosis. As I have said before, there is no cure. You live with this cancer for however long you live after diagnosis.This isn't your typical terminal where you know about how long you have. This terminal is a long slow, and usually painful, death. You're in pain all the time. Well, you might have some days where you feel good, but usually you are in pain. It's bone pain. A nagging pain. Because your bones have fractures and sometimes tumors.
Yes, there is treatment, but you do not know when that treatment will stop working. Or if the next treatment will work. Or the one after that. Some people exhaust all treatment possibilities right away and do not get to the next step of a stem cell transplant. Others are lucky, like I have been, to have treatment work and get that stem cell transplant. There is also a new treatment out there for people who have exhausted all chemotherapy treatments. It's called the Car T-Cell Therapy. But, some people may not make it through that helping them. The same goes with going through a stem cell transplant. Not everybody is lucky to have anything work. And that's my fear. That one day no treatment will work and I will leave Brandon without a mother and Eric without his wife.
A lot of people don't understand this cancer, but seem to act like they know everything about it and the person going through it. I recently lost somebody who I thought was a friend. No, not to cancer or death. Well, kind of not to cancer. This person has another friend going through an incurable cancer and they decided that I supposedly don't understand how lucky I am to have a treatable cancer. Nice to know that they know me better than I know myself. The way I found out about all of this started very childishly. We don't have to go into that. You better believe my fucking ass I know just how lucky I have been. I have seen and watched new virtual friends (from MM support groups on Facebook) go through this worse than I had it and not make it. I have, in the past, gone through a time when a friend of mine was diagnosed with Leukemia when she was 16 and then treatment stopped working and the cancer spread to her lungs and then to her brain. At the same time I had another friend going through a curable cancer and I felt the same way this so called friend of mine is with me, but at 18 I was more adult than this person. I went to the friend with the curable cancer and talked to them. Told them how I felt. What was going on. We actually talked it out and I understood her side and she understood my side. At 18 I was more of an adult than this person I thought was a friend.
This person hurt me. They hurt me hard. I have not been that hurt since I found out a guy I was engaged to was screwing around on me and I had to kick him to the curb. Besides that guy, I have never been this hurt. And of course, they could care less. The way things have gone down, and the way they feel makes me think they would rather I died from my cancer over their friend. Makes me think they would rather Brandon grow up without his mother. I know I am lucky to have a treatable cancer. I know it could be much worse. That is why I do my best to live my life to the fullest I can. I could go out on disability permanently. It's actually something my doctor had mentioned to me, but I would rather try to lead as much of a normal life as I can. Brandon and Eric deserve that.
A few nights ago Eric and I were talking about how we would tell Brandon about my illness. It's an illness I will have for the rest of however long I have. When we tell him, he's probably going to be sad and scared that he may not have his mommy very long. Any time I get sick from a cold or flu, he may think that is it. When the MM comes back, because it will, with vengeance he will be afraid of what may happen. He will never know his mommy as the actives woman she once was. He doesn't understand now, but will one day. And I hope I am still here at that time.
I have lost other friends over my diagnosis. But none have hurt as much as this one has. I mean, people are entitled to their own opinions. We are a free country, although some would beg to differ. But here's a news flash. Not all cancers are the same, No two cancers, or people for that matter, take to treatment the same. I am lucky, very lucky, enough to have had treatment work for me since I started treatment in November of 2015. Just 5 weeks after delivering my son. I am very lucky, I know that. Because not everybody gets a treatment regimen that is good and works.Not everybody gets a diagnosis early or a diagnosis that your cancer is found early.One day my body and my cancer can decide that none of the treatment for my cancer is going to work and just stop. And technically, my cancer is killing me right now as I type. Like I said before, it is a very long slow painful death sentence I have. There are many days I can only stand for maybe 5 minutes at a time from the pain I have. And some days my medication for that pain doesn't work. I push myself to play with Brandon when I am in pain. I shouldn't, but I do. I may complain about things that are trivial to others, but no two cancers are the same. No two people are the same. Some people need to realize that and not compare people.
Friends come and friends go. But when they go, it's usually just from growing apart and going separate ways. People do lose friends over cancer diagnosis because they don't want to see that person diagnosed in pain or they don't want to hear about it. I have lost some when I was first diagnosed. But then again, I had others get closer. I am very lucky to have those friendships. But other the last 2 1/2 years, I have learned that even though people ask you how you are doing, they do not necessarily want to know exactly how you are doing. They want to know good news, not the bad. So, I technically lie and say I am ok. That I am doing well, when in all actuality, most days, I am not. I'm sure when this ex friend finds out about this post, they will probably be angry, but I am at the stage where I just don't care. It is now their loss and they can live with cutting me off in a childish way. I am still hurt, but I am slowly (very slowly) getting over it. I have friends in my life that actually care about me and my family. People that will talk to me if they have a problem. And those are the people I need in my life. Not the ones who think they know everything about me and leave.
I know this post was kind of rambley, but my mind is all over the place about this and has been for a week now. But I knew I needed to write it down. Get it out. Thank you for reading.
