Progress

My life is progressing nicely I should say. I am doing okay for once. I just got my latest blood work done and most everything is about as expected. I do feel some RA progression and have a dr apt next week to discuss what's next.

I have painted some more walls in our house. Eventually I think every wall will be painted. Right now I have done 1 bathroom, the walls on the stairs, and half our bedroom. That means I have a lot left to go but I like the progress I have made.

Back in February I blogged about starting a knitting group at a local cancer center. The first meeting I showed up at 1pm because originally we had said 1 pm, but it was switched to 1:30 pm. And there were two other people waiting for the start when I got there. Then more people showed up and we ended up with seven people the first week. It was also supposed to meet every other week. Participants requested meeting weekly and asked if we could stay later. So we will just say that it is very successful. And the best part is that one other woman who attends is an madly amazing knitter and she can help more people that I can.

Finally, I haven't had a doctor appointment in more than three weeks - a very rare occurrence. However next week I have three doctor appointments to compensate. Back to reality I guess.

About That Positive Attitude

Having a positive attitude with a bad diagnosis can be like putting lipstick on a pig.

The pinkification of breast cancer includes that perky little attitude with perfect make up and a big smile. Sorry but some days I just don't feel that way. I read this article about how the positive attitude requirement of breast cancer or other icky diagnosis can lead to a feeling of guilt. Um, yup.

Cancer (and other icky diseases) bring a whole range of emotions and some days, especially during chemo, a positive attitude can be fleeting. Or just not there if you are working on keeping your lunch down again. And after treatment its the same thing. And, as I said, its not just with cancer, but any crappy diagnosis, a positive attitude doesn't always happen.

I can tell you that my positive attitude can be virtually non-existent many days. Sometimes people ask me how do I do it. I think what are they talking about? I am just going through my life and putting one (aching) foot in front of the other (aching foot). Please don't tell me you are amazed by that. I'm not amazed. I'm just getting through my day.

The ever knowing 'them' tell us to keep our positive attitude. It will help us get through treatment better, prevent depression, and make us better people. Well, lah-di-dah, I try but I'm not going all out.

And if I am so happy and perky, what happens when I lose a friend or my next scan isn't as hoped? I'm not going to be so perky am I? And maybe I'm not going to be so happy. I might even feel a little guilt about my lost friend. And more guilt about a bad scan. What did I do wrong? Why did this happen to my friend?

That so-called required positive attitude can be a pain in the butt. I know it takes drugs and therapy to get through life sometimes.

Saving My Strength

I am saving my strength for a test of my endurance later this week. I am driving to visit my brother. 384 miles or 5 hours 36 minutes away per Google Maps. All by myself.

This is my annual trip to visit his place, this year in his new place. I go out and annoy my brother and have fun with his kids for a few days. Then I drive home. All by myself.

In recent years, I have noticed my ability to drive long distances is less than in the past. Also when I get there, I am really tired. Driving is the one thing I can do that day. And I have to drive home on Monday and get back in time for a 4 pm doctor appointment.

Anyway, will I be exhausted all weekend I think. My brother suggested going for a hike. I don't think so.

But I really want to have fun with my nieces and nephews. There are four of them. Two have birthdays in the fall and two have birthdays in the spring. I have given up finding birthday presents for them so I take them shopping and they get to pick out what they want. It also gives me a chance to spend time with them individually. We go on my annual spring trip for the spring birthday kids and then at Thanksgiving for the fall birthday kids.

The other reason I go is to annoy my brother in person. Actually I like spending time with him and as we get older it gets harder and harder to find them time.

Is it possible to save my strength for this? I am not sure. I just know I will be very tired when I get there. And even more tired when I get home. I am not sure my husband will appreciate my resulting crankiness.

Language Please!

I am not very happy with the language used to describe people who are less than healthy. Just like the mental health community has changed their words to avoid calling people the "R-word", we need to get rid of some other words as well.

I'll start with that awful S-word, the one to describe people with cancer. Ditch it. Please. I didn't survive anything more than a boat load of doctor appointments. And by the way you can get rid of all those war-related ones too. The B-word (battle) is another awful one. Fight? Fighting a cold is okay because I think its a short term inference and I can live with that. Fighting cancer? Not so good.

Next there is another S-word, we'll call it S-word2, or 'Sufferer'. First of all its hard to say. Eat some peanut butter and try to get it out. I suffer from pain, not a disease. And don't call me that word either.

What are good words to use? I can be someone living with cancer, rheumatoid, or fibromyalgia. Or I could be an arthritis patient. But I would really just like to be a person, not a statistic, a number, a survivor, a sufferer, a battler. Just a person.

Going to the Beach!

I am so excited. I haven't been to the beach in months. Not since sometime early last fall. this is very unusual for me. I like to go to the beach year round. I don't swim that much but I like to walk in the sand with my toes in the water. See what the tides have brought in and how the storms change the coastline.

My husband thinks I am weird crazy insane for insisting we go to the beach in the winter. But I have convinced him that he will like it because we go out for clams (and he gets a beer) afterwards.

I have wanted to go to the beach for weeks months but either our schedule didn't work or the weather was not cooperative. I draw the line at going to the beach in a blizzard, a snow storm yes, but not a blizzard. I do have my limits.

But today we are going to the beach. I can't walk on loose sand and the tides aren't the best - coming in, not going out. We enjoy fresh air and a breeze off the 40 degree ocean water which will make it a bit chilly. Then we will take the Sunday paper to the clam shack to read while we wait for our food.

It may not sound like much but there are so many things I cannot do any more because of my health and this is one thing I can do and really enjoy. Its the little pleasures in life that keep us going.

Deadline 2020: I am very disappointed

I have never been a big fan of the whole Deadline 2020 (to end breast cancer by January 2020). How can you put a deadline on something like that? Apparently back in 2010 some people decided they were tired of scientists setting the research agenda time line so they decided to create their own deadline. How illogical... how over simplified.

Through my blog reading, I read the latest updates from other bloggers. One of them, Jennie, went to the recent Deadline 2020 people's meeting, which the metastatic breast cancer community calls, Deadby2020, at a high end resort in Napa Valley. I am flabbergasted that they can send a bunch of white healthy people to an expensive resort (that could be held in a Holiday Inn conference room in a cheaper area of the country) to discuss a topic while leaving out important portions of it. (Read Jennie's blog post to get all the details.) Perhaps there should be an investigation into misuse of funds here as well.

One problem is the Deadby2020 people ignore metastatic breast cancer and only focus on prevention, and women, and white women only (if their meeting is anything to go by). This leaves more than 40,000 people dying each year from the disease. And Jennie acted  in the normal fashion of the metastatic breast cancer community and started live tweeting from the meeting. And was cornered and told to stop. This was after she was cornered and told to stop bringing up metastatic breast cancer.

I can't believe how rude they were to her. How selective they were to her. How unconcerned they were about her feelings and sensitivities. I have run many events myself and can understand how one person with questions can appear to alter the focus of a meeting. But if they are too narrowly focused they are not benefiting anyone. It would have been better if they had stopped their agenda and added a session on metastatic breast cancer and what can be done about it.

Also the concept of holding such an event which does not accurately represent the people they are trying to help while excessively spending (rooms start at $540/night), in my opinion, is basically unethical and irresponsible.What were they thinking? Or not thinking at all?

So, if you have dollars to donate, I would like to ask you to not donate to the Deadby2020 people (National Breast Cancer Coalition) and give them elsewhere which might be more inclusive and more representative of the people they are helping..

I Am Too Tired

You know you are tired when people you don't really know tell you that you look tired. At the end of my knitting group yesterday, people told me I looked really tired. I went home and got in bed for a few hours. I did get in bed long enough to cook and eat some dinner before going back to bed.

Yesterday I knew I was going to have a long day. I had a long postponed appointment to return some volunteer materials to an organization for which I am no longer able to volunteer. They were meeting me half way but I still drove over 150 miles round trip. And went to my knitting group. I was gone from 9 am to 430 pm which is a very long day for me now.

Today I am contemplating skipping the gym because I am so damn tired. Yes I am that tired. But I still have other things I need to do today. The most important is getting my nails done - and that doesn't require much effort. Actually more important is I will stop by and see my parents.

I know going to the gym is a good thing but I think it might be better for me to save my energy and continue to rest. If I don't go to the gym, I can stay in bed for most of the morning, which is something I really need.

I have to do something about my life to slow down. In the last few months, we have been busy. Last week we went out to dinner twice. I have taken care of a bunch of loose ends (like driving so far yesterday) and life is calming down. But gardening season is approaching and I still need to finish painting. Maybe its time to hire someone for that.

I want to add I am not a lazy person. I just have a very finite amount of energy each day and I seem to have used up too much energy earlier this week and need to rest to recover. Its sort of like having a really bad cold or flu where you don't have the energy to move from the bed to the couch because its too far and would take too much effort. I wish it would go away but there is not much chance of it.