The Props In My Life

How do I handle my life with its medical disasters? I have all sorts of little props to help me out.

• I have a high chair in my kitchen. I can sit when I cook so I don't get as tired. Its new. My husband bought it for me when we moved.
• I have a folding shopping cart for when I go to farmer's markets or any place where I need to carry anything. That way I can actually go places and do some shopping by myself.

• I have cushions all over the house so I can get comfy when I sit down and can put my feet up.
• I have a power bed so I can raise the head and feet and get comfy when I lie down.
• We moved to a raised ranch so I don't have to deal with stairs. It makes my life so much easier. The bedroom isn't upstairs, its just down the hall.
• I have Butrans pain patches that allow me to function as a human being and not be in pain. These are the only things that allow me to get through my daily life without collapsing or being in so horrible pain. 

Actually the single most important thing that helps me cope are my marvelous, wonderful Butrans pain patches. If you are in chronic pain, try them. Without them I would not be able to function.

Changing Stressors

As life goes on, my stressors have changed. Or maybe just the list gets rearranged. When I first started blogging, breast cancer was my primary concern. But then my health started to fall apart and things have changed.

At my breast cancer diagnosis, I quickly prepared myself to cope with breast cancer and I came up with a plan - support groups, etc. And I dealt with it. 

Then I got gall stones and had my gall bladder out. Then I found out I should be seeing an endocrinologist about my thyroid cancer which made it harder for me to ignore it. When I went to one she sent me for an ultrasound which found some thing on the thyroid bed which we had to follow and it stressed me out for a while. Then my back started hurting. then I was diagnosed with fibromyalgia and rheumatoid... Somewhere in there I got a root canal too....

Where am I going with this? I had lunch with two breast cancer friends this week. One of them has  multiple other current health issues. We were talking about them and she said that breast cancer was the last thing on her mind these days. She needs to get the rest of them fixed so she can back to worrying about breast cancer.

For me, my stressors now revolve between what is my current worst (usually health) problem. It can change daily. I sort of hang on during my roller coaster ride. 

So how do I cope? I have created my own little support world. I burn off stress by going to the gym three times each week. I have a therapist I see monthly. I have a meds therapist (with the good drugs) to keep me sane. I have a weekly knitting group at a local cancer center. We all are coping with cancer. I also get together with my other 'unhealthy' friends and we hang out and talk bitch about our health concerns.

Since I can't be healthy, I just try to keep my sanity. If at all possible.

But I Can't Sleep

I'm exhausted. We went away for the weekend and I needed more sleep. I always need more sleep. The only time I get enough sleep is when I can take a sleeping pill and it actually decides to work.

But I haven't been able to sleep. My back is killing me. This has been two nights now. Crankiness may be showing up soon.

My husband informed me this morning I need to stop going to bed so early so I don't wake up so early. I go to bed early because I am exhausted. Then my back hurts and I wake up. Even if I take my pain pills. This is very aggravating.

I'll have to wait for my next pain management doctor appointment to talk about this. But I'm might need to make that appointment sooner instead of later.

What the Patient's Think

I always applaud research that consider the patient's side of a cancer diagnosis. Honestly how many more research studies do we need on mice that look for new cool drugs (but finding a cancer cure would be a nice thing)? I mean all that research is nice, but I think all us patients would appreciate a bit more information on the impact of cancer diagnosis and treatment.

Face it, when we are diagnosed with cancer, we wonder are we normal in our reactions, treatment plans, dealing with doctors and more. Its normal to wonder "am I the only one freaking out at my doctor?" or "why am I running to the library and surfing the internet to find out what the doctor suggests is all about?".

CancerCare put together a Patient Access and Engagement Report for 2016. I found it very interesting. And it was very nice to know that I wasn't the only one with some reactions and issues.

Just knowing that you are not alone in your thought process can be very comforting.

I took a little holiday

Its a holiday and I took a little holiday. We went up to a friend's cabin in the mountains where there is no wifi, no cell phone service. We were off line. Okay, we had a satellite dish for TV but I was happy to relax and read a book (you know those things with paper pages and cardboard covers?)

Anyway, I didn't blog. I didn't read my email, look at Facebook or anything. It was very nice. I also pretended I was a healthy person and helped my friends paint the trim on their house. Back to reality tomorrow, after about 10 hours of sleep.

Genetic Testing

So if you have a family history of breast or ovarian cancer, there is a strong chance you have one of the two BRCA genes. And now if you have BRCA1, there is a significantly increased risk of uterine cancer - 22 times higher in a recent small study.

I read that and said 'wow!'. I am somewhat surprised this was never figured out before.

Earlier this week I was talking with a friend and she was tested for BRCA back in the early 2000's when the testing was just starting. She told me that the testing is now done differently as technology has changed. And the test now includes several other genes including ones for colon cancer. When I see my oncologist next month, I will ask about testing.

With my medical history I was previously tested for another gene and was told I didn't have it but probably another gene that hadn't yet been discovered. so maybe its time for another test.

Since I had gone through genetic testing once, I have gone through the thought process before, I have some experience. If you get tested for genes and find out you don't have it, you get to take a deep sigh of relief.

But if you do have the gene, I think its a bit challenging. First of all, where did you get the gene? You don't get to blame anyone so forget about that route. And you could have been the first with the mutation. And someone could have had the gene and not had any cancers. (Just because you have a gene it doesn't mean you will get cancer, it might just increase you cancer risk.)

Then once you get past that part, how do you tell people? Who do you tell? I thought about who I would tell and who needed to know and who would panic/overreact. My siblings obviously needed to know. One is married with children and they would need to be screened. And then and etc.

I think knowing that certain family members would overreact, well let me say I would expect and overreaction based on their previous reactions to other issues, did not fill me with warm fuzzies. Because of that, this is something I have rarely talked about it and never told family members (because it was negative). If I had the gene, it would have been another story.

Now that I am going to ask about testing, I might have to cope with that.... But I'll wait until then, and take a deep breath.

Managing Emotions

This week I read two different blog posts from other women dealing with breast cancer - Nancy wrote about cancer patients being told to be positive and Florence wrote about the crappy and the happy we deal with in our lives. After reading them, I commented on both. And then started thinking (sorry!).

First of all we have the issue of cancer patients being told to be positive. Honestly, whoever came up with this was an idiot. There is something to be said for not succumbing to depression while dealing with a medical disaster. If you are depressed, you aren't going to take your meds, go to the doctor, get emotional support. But if you are trying to stay positive you will probably handle it better. However, don't tell me to be positive and smile.... Grrr....

Then we have the issue of coping with the crappy and the happy. Everyone gets a load of crappy in their life and a load of happy. But its how we handle it all. We have to learn to balance the bad with the good and look at the goals for the long haul and take enjoyment out of what we have.

Even without adding in a medical roller coaster along with everything else, it can be tough to maintain one's sanity and be able to smile once in a while. Its that medical crap that can screw everything up. All of a sudden you can't work, you have problems getting around and paying your bills. And you are supposed to smile? Don't tell me to be positive on top of all that. I will work on being able to keep a smile on without your help.

I think I just don't like being told what to do.