Monthly Archives: January 2012

Poor kid…Fell asleep with her nebulizer going..

I have no idea how she can sleep after getting all those steroids & albuterol. I feel so bad for her. This is her life…She’s a trooper…

Advertisements

Hard questions…Difficult answers

Tonight I went to a women’s church group. I like going to these because they are usually fun & they get me out of the house. One of the few times I get out of the house by myself. Not being able to drive kind of sucks & limits what I do.

Lately it has become near impossible to get through one of these evenings without having to answer some uncomfortable questions. I have come to the conclusion that people are really curious in general about death. They are also curious about how people deal with being told, “You have __ years before you will die from your disease.”

In the past I have been able to avoid these questions by turning the conversation around or jumping subjects. I have also been lucky to keep most of what I deal with under wraps so to speak. Not talking about it doesn’t work much anymore because of all the time I have spent in the hospital in recent months & people have actually found out that I have cancer.

It doesn’t bother me to talk about it. In fact anytime I can raise awareness about Carcinoid cancer the better. Being it is so rare I often have to go into great detail with people about what exactly it is & how it affects someone with it. It is fairly easy for me to talk about it because I can detach myself from it all & become the teacher. It’s easy to list facts & numbers.

Now where it gets tricky for me is those uncomfortable questions I mentioned earlier. Like I said the questions about the cancer itself are easy to answer, but when you get into the more personal questions is where I get tripped up.

I had someone ask me not just tonight, but I get this question A LOT… “How do you go on every day?” I always want to look at them & say… “REALLY?” Well let’s see, I get up out of bed everyday take my shower, take care of my kids, husband so on & so on… What do you think I do lie in bed & cry about it? I still have a family & husband to take care of. I still have a life to live. I just have a little obstacle (some days more than others) that gets in the way. I think about it, but I don’t obsess over it all the time.

  • How do you handle knowing you are going to die in a few years?

It’s not like I am going to die tomorrow. I don’t dwell on it, if I did I would be a very unhappy person & no one would want to be around me.

  • How do your kids handle this?

I dislike this question a lot. My almost 17 year old has full knowledge of what I am dealing with & frankly knows more than I would like her to know. When I was first diagnosed we took her out to a really nice dinner (she was 11 at the time) and we told her over dinner. We told her I had cancer & she asked if I was going to die. I told her not for quite a few years. She said ok and asked if she could have the shrimp. She doesn’t like it when people come over to help. She thinks its charity & she says she’s not a charity case. Other than that I think she handles it pretty well.

The one thing I dislike more than everything else is when people look at me and tell me they know what I am going through. Please don’t compare. If you suffer from an aliment which most of us do. That’s fine you are allowed to be sick to have a bad day/week/month. You are allowed to feel crummy & sick. I will not take that right from anyone, but please don’t tell me you know how I feel. Don’t tell me you know what I am going through. Unless what you have is going to kill you please don’t tell me such things.

People are curious by nature and I know that. I don’t mind answering questions from people I encourage it. For me it is the type of question. Questions like the examples I stated kind of put me in a weird place. I never know how to answer. I don’t want to come off sarcastic, but yet I don’t want to sound like I am feeling sorry for myself either. I am just living day by day the best way I know how. I still have a family to raise I still have a husband I need to be there for. I am going on like anyone would. I just have a shorter amount of time, in which get this life done right.

First Rain


Importance of Journaling in my life

I have always been passionate about journaling. It was a big part of my upbringing and important to my parents. I remember as a kid being told every Sunday we had to sit down and write in our journals. My sisters and I were all given our first journals when we were 5 years old. Every Sunday we would all sit down and write something.  I remember not being thrilled about this and actually, I dreaded it for a long time. I never knew what to write and I would just sit there. Usually I wrote simple explanations about my day. It was always just once a week, but it was something my parents insisted on us doing.

After a few years I did not dread it as much. Both of my parents kept journals. I remember a row of journals in the bookshelf that were my parents. I also remember the journal was sacred. No one read anyone’s journals with out permission & was never an issue.

I did not realize it but my parents were instilling a very important skill in me. Not only did it chronicle my life. Also taught me about what and how I was thinking. Also taught me how to deal with my feelings and work through problems. I have had countless journals throughout my life. My very first one was a red hardbound journal with my name in gold lettering.

As I got older, I got better about journaling. For years I kept a journal and was very good about writing in it almost daily. I stopped journaling off and on over the years. Now looking back life was less stressful when I was journaling, because I talked things out in my journal. I used it like therapy so to speak.

When I have stopped journaling, it has always been because I am going through a rough time. Or it is because I am not ready to process something that had happened. I kept a journal through my original cancer diagnosis & subsequent surgeries. However after I had my youngest daughter and then told me my cancer was incurable I stopped writing. I think I stopped writing, because I had not totally accepted the fact I was not going to get better.

Almost a year ago I started writing this blog. This has been a journal of sorts for me. I do need to get back to actually writing a journal, because I tend to write more personal things on paper. I think I will make this a goal and work on it.

The list of things I hate about my cancer…

Having the type of cancer I have is a lot like having an invisible disease. After having a few negative days I decided t write a blog post about the things I really hate about the cancer I have in hopes of getting it off my chest. So here are just a few things that that top my list .

When I go in for my chemo/shots people always look at me funny. See I don’t look like I have cancer. I look just like everyone else. I also don’t get the traditional chemotherapy either. I get painful shots in the ass with a huge needle that lump up & become hot & inflamed. Just like most people I still get sick after my chemo/shot. About the only difference as far as side effects is my hair will thin, but I won’t lose it all. Unlike most people I will be getting this type of chemo for the rest of my life.

Something else that irritates me is people who go in for chemo they usually get a sheet of paper with questions on how they are tolerating the treatment and the nurses talk with them about it and what might help them. Because mine is not traditional chemo I don’t get the questionnaire or the face time. I go in wait for 45 min in the waiting room get the shot & leave. I have many of the same side effects as those on traditional therapy. I still get the nausea, extreme fatigue & abdominal pain as those on traditional chemo. They just put me in a different category because the delivery of the medication is by shot rather then by infusion. I always come out feeling like I really don’t matter. Mine is rare & they don’t know much about it. So I am kind of ignored because of their lack of understanding of the disease.

I get my shots every 14 days. Of those 14 days, 8 days I usually have measurable side effects. I will only have about 3 days where I feel well enough to do more than I absolutely have to do to keep my family going.

Days I feel good enough to venture out I have to be carful. Carcinoid Syndrome is triggered by many normal every day things. Which makes leaving the house difficult. One of the big triggers is exertion (physical exercise) even a trip to the supper market to pick up a few things will wipe me out to the point where I am wheezing & have abdominal pain to the point of doubling over & I will be sick for a few days after. Other triggers for me are every day stress, air quality, temp. and food. Honestly everything triggers this disease as it is directly affects the endocrine system (thyroid, pituitary & adrenal glands as well as the pancreas, heart, lungs, liver & kidneys).

The fact that it is incurable I am not fond of either. Sure I will live longer than a few years, more like anywhere from 15-25 years (from onset of syndrome), but it will be slow, nasty & painful.

The biggest thing I really hate is when doctors and others say, “Well you look so good.” I understand they mean well and all, but I always want to say “Well I don’t feel all that great, but thank you?” I honestly believe the Dr. forgets I am sick sometimes as well as so many in my life. I think maybe because I really try not to complain much. I try to lead a relatively normal life or as normal a life as I can. Some days though I really want to just whine about how awful I feel. I would really like to lie in bed some days too, but with my youngest (PA) that is not a possibility ever. I don’t want people to feel sorry for me but I would like people to understand that I am not brushing them off when I call last minute & say I really don’t feel well.

I would love to leave the house every day and be the “FUN” mom. I want to take PA to the park. I want to be able to take my older daughter to the mall & just window shop. I use to be a very active person. We use to do so active things as a family like hiking and tae kwon do. I am also one also one of those weird people who enjoy doing housework. I would love to be able to just get up and clean my house with out having to wonder if I will end up in the ER because I did too much. Simple things like doing laundry or doing dishes are almost impossible most days. I often have to rely on my husband & older daughter to do them for me.

Honestly I would just like to have my life back…