Wondering

I keep wondering, if maybe, I should edit myself, or at the very least, reread what I’ve written. I like communicating, but I’m getting tired. I’m getting foggy.

Try not to be shocked by my choice of topics. My family understands. We’ll always love each other. They understand what I’m about and what I’m not. That’s why I can include them.

Some subjects I won’t address. These are subjects that would adversely affect the lives of others and my relationships. I place these under the Not my business category. I have enough business of my own, thank you.

It does not mean these issues have no affect on my life. I just need to show respect. Not everybody has the option of not being here in twenty years. I can say what I do for the greater good, because I’ve faced some vital issues regarding my mortality.

I am going to tell you how my perceptions of blood cancers have been formed. I think it’s important to realize how the past events of your life shape your current thought process and outlook.

My first brush with a blood cancer was when I was in elementary school. My mother’s friend from college died of leukemia. She had two children, both younger than me.
I remember crying, not for the woman, but for her kids, and about the idea that my mother could die the same way. I think I was seven.

I don’t remember my parents mentioning this woman’s illness until she died, and we had her girls staying with us for a while.

I think I was in the fourth grade when another friend’s mother really started to struggle with her leukemia. My father had roomed with their father in college. Our friends are twins, like Heather and I.

I remember going apple picking with their family, and thinking, she doesn’t look so bad. I always forgot she was sick. I’d talk on the phone for hours with the girls. The subject of their mom never really came up.

I’d talk to their older brother sometimes too. He was and still is, ironically, one of my husband’s best friends.

Their mother, Lynn, looked startlingly like me, same facial structure, coloring, same body type.
She underwent three transplants, one that failed after 120 days. One hundred days is supposed to be the magic number. You’re supposed to be on the safe side of your treatment after that period.

She, obviously, wasn’t. She died when I was in the fifth grade leaving four children behind.
I still love her family, and I try not to let my relationship with them be effected by my illness. It is. We don’t have the words for each other. I look at them and want to say something, but all I can do is remember how difficult their childhood was. I remember how hard their parents tried to make their mother’s illness easier, but couldn’t.

I would call up their older brother pretty frequently when I was first diagnosed, or at least suggest my husband should.

My husband assumed, wrongly, in the beginning of my treatment, that I should be able to continue to take care of my family the same way I always had. He insisted Lynn did it. We fought about this for months until I pulled the trump card and reminded him that Lynn had died.

At some point, she stopped cleaning the house, cooking dinner, and taking care of the kids.
I still want to call her girls, who I was such good friends with, and barrage them with questions. What made the situation better? Should I keep X away from me when I’m really sick? Should I tell him I’m going to live or be realistic? What made it better? What are the little things I can do?
I have so many more questions for them. I’m being passive about asking. I’m hoping J or D are still keeping up with me, and will comment or email their answers.

Everytime, I even think about calling them for this information, I burst into tears. Not the slow moving tears you can talk through or hide, the heaving sobs variety from the reminder of how hard someone can fight and fail.

Since this experience, I didn’t have much exposure to these types of diseases.

I had a friend in junior high that died from complications of AIDS. Blood cancers and HIV/AIDs fascinated me by 13.

I would do little science experiments and read advanced medical literature. I loved the theoretical aspects of immunology. I liked research. I think you can tell the nerds early.

I think the parallels of blood cancer and HIV are intriguing. I don’t know if they’ve really been studied, but I’ve recognized a lot of people suffering from lymphoma experienced a relatively severe upper respiratory infection in the months prior to showing symptoms and becoming diagnosed. This upper respiratory infection had no known cause and showed no change in CBC (bloodwork).

When this happened to me, I was laid out from work for a week. I had a CBC done and a chest X-ray. They were both normal.

When these labs were referenced by one of the first doctors I saw in January when the masses started to present themselves, I couldn’t understand why my CBC was normal. To me, a normal CBC, absolutely normal, as in perfect, when I felt so terrible, was wrong.

My instinct, my past experiences, sent me into a panic. I thought I was going to die. I was convinced I was going to die.

I wish past experiences and impressions of diseases were discussed on intake with the health care team. It is a huge clue into the fear the person is experiencing. These experiences are the jumping point for all patient’s assumptions, whether or not they have been educated with numbers and science.

Numbers and science will allow patients to intellectualize and attempt to control their disease. It is beneficial, but with out understanding and encoding the past, no one will understand the nagging thoughts, the cause of tears, the anxiety, or the nightmares these patients are experiencing.

Knowing these factors is as simple as asking, “What experiences have you had with this disease previously?”

My answer would be, “I’ve never met anyone who has ever survived a bone marrow transplant. Everybody I have ever personally known with a blood cancer has died.”
Maybe then they would understand that I was scared to death and no matter how hard I try, I can’t keep these experiences from creeping into my mind. I don’t think any other patient can either.