So do you ask?

We were off on our adventures today - lighthouse, museum, old fort, beach, and dinner later on - and I saw a woman with short hair and wearing a t-shirt for a Komen breast cancer walk some place far away, like Alabama. Now is she a volunteer, did she participate, or is she a person living with cancer? This isn't really something you can walk up and ask someone you dont know. I mean there are things you can say to a total stranger like 'do you have the time?' or 'do you know where route 20 is?'. But it is not really considered good form to say to someone 'excuse me, did you/do you have cancer?'.

The world is littered with the debris and detritus of all these fund-raising/networking/world saving/cancer curing events such as t-shirts, bracelets, jewelry, tote bags, water bottles, and any other thing you can possibly think of with the cutesy little 'cancer' tag. But just because someone is wearing it doesn't mean you can ask them. Basically its just rude. So I didn't ask if she was someone just out of treatment with a haircut by chemo, but I was a little curious and wouldn't have been surprised.

But as I think about it, as a cancer person, I don't usually let anyone know my medical history unless they know me. Its not their business. And there is nothing worse than some absolute idiot coming up to you and saying all sorts of platitudes like 'you poor thing', 'you are too young for cancer', 'you are such a fighter to be dealing with this'. I need a wise guy retort for those - but usually I am too blindsided by the morons to come up with anything...

Changing vacation plans

We used to plan all sorts of energetic vacations where we would climb mountains and hike all day and do all sorts of energetic things. We didn't do that this time. We were driving here and my husband mentioned something about bringing hiking boots... It hadn't even crossed my mind to bring hiking boots. I was more concerned with bringing matching pairs of shoes. Hiking boots weren't on my radar. This have changed.

We have been having fun but not really hiking.I mean today we walked around Monhegan Island but my back hurt. And then the boat ride back, made my back hurt more. I think my choices of fun things in life will have to change. Which is moderately depressing. More than moderately. Every time I turn around, something else becomes something I can't/shouldn't do.

I am not sure what we will do on the rest of our vacation but it will include sedentary activities. We will go to the beach.

PS I just went back and read this. I don't mean to sound whiney. I mean to sound frustrated and pissed off and what I cant do. And yes there is a difference. But I am still going to the beach.

Living on the edge

I am living on the edge. I find it hard to remain cheerful and perky and not let me inner evil twin come through. I find that often I am ready to snap at people for no reason - or at a minor thing. I think it is related to living in pain. Ya, think? Maybe that is why I am quickly turning into a 'get the hell out of my way evil b*tch' at the drop of a hat. I can go from nice to 'stick her in a padded cell for 20 years' in no time.

So I tried to do some research on this. Did you know chronic back pain can cause depression? What a good start. But I did find this on pain management techniques:

There are three areas:
1. Non invasive, non-drug pain management - this covers massage, heat/ice, exercise, chiropractic care, PT, and electrortherapy. I have tried all but chiropractic care because I was told to avoid that due to the causes of my pain. The rest didn't work or only provide short term work. I am back to an almost daily walk and do my exercises from PT daily.
2. Non invasive pharmacologic pain management - or in normal English, 'the give me the drugs option'. I got them all. I tried OTC anti inflammatories but they didn't work so I have prescription ones. I also have prescription pain meds for neuropathic pain. In addition I have muscle relaxants and prescription pain meds for the really bad days. Finally, I get to take tylenol (yes, really) for the other regular normal pains that dont get covered by the rest of my personal pharmacy.
3. Invasive pain management techniques - this is the big needles section. I have had two cortisone injections and will probably have a radiofrequency ablation (denervation) at some point. You will note the results of this are mixed - meaning it doesn't work for everyone. The other three things listed that I haven't had are not yet 'tried and true'. They are controversial, inconclusive findings, or not known to be effective.

Well, now I am overjoyed and perky as all hell. This leaves me with the 'give me the drugs' and 'stick more needles in me' options. I have had injections in my lower back and my doctor I think will move on to other areas of my back and hips for more big needles - gee can't wait.

And these are the advances in medical techniques that have provided breakthroughs for those with chronic pain. I think I need more breakthroughs. I'll settle for coffee this morning. And search for my perky side.

A most exciting day

Why is it so exciting??? Because we are on vacation for eight days. We leave this morning (not not quite packed but I have until 9) and won't return until next Saturday. Very, very exciting. I was trying to think when our last vacation was but chemo brain did not allow me to remember. My husband had to fill in the blanks.

Last May we did not vacation, we took a long weekend and went to the Stowe Weekend of Hope. It was only a weekend and not a vacation. Last December, we went to visit relatives in California which technically was a vacation but it involved traveling in a blizzard (or two)... And was very busy. It was not as restful. Holiday travel is never relaxing - always complicated. It was nice to see relatives that we never see but its not the same as a check your brain at the door vacation. Then last September (a year ago) we went away for five days. As soon as we came home, I had my gall bladder out and that negated all of the relaxation aspects. Before that was all that chemo and radiation and surgery crap that goes along with cancer...

So we are off to enjoy, bad back and all. Actually a real question is how will my back deal with car travel and hotel beds... This is a real question. But I am mostly packed and have packed the pills I need for every day life and the pills I need in case. And the vitamins I need - calcium for my osteoporosis. I need a separate bag for pills.

But in the meantime, its time to get organized.

I volunteer

I volunteer a lot. One of the big advantages of working a couple of part time jobs is that I can do volunteer work. I know in certain circles being a volunteer can be considered to being a sucker for more work. But if it is for a cause yuo believe in, I don't think you are a sucker for more work.

Last night started my volunteer season - it seems to dry up over the summer. I haven't done much for a few months. I had a meeting to start planning our local Relay For Life (www.relayforlife.org to find one near you.) If you have had cancer, go find one, and participate as a survivor. If you haven't had cancer, they all need help with volunteers, donations, etc. Its a worthy cause. The American Cancer Society raises millions of dollars through these events held world wide throughout each year. Ours is probably next June but we are starting early this year. I will handle PR again.

Then in a few weeks, is the Thyroid Cancer Survivors Association's annual conference (www.thyca.org) which is being held near here for once. I am volunteer for that as well. I will do some PR and will help before and during the event. I take my marketing skills and try to get the word out.

I keep on getting emails from other local organizations who want my help with stuff next week. Well, I maybe a volunteer but I need a vacation so unfortunately I won't help with those. But I do need to make sure I am on the list for the marketing conference in the spring.

Why volunteer? Its a chance to give back, help a cause you believe in, and its amazing what you get in return - appreciation and satisfaction. You also get to meet amazing people doing amazing things.

Anyway, today I have to get moving. I wanted to leave for work in 25 minutes but since I haven't done anything to get ready, that wont happen. I'll get to work a little later... But I will be with out an air cast which makes me happy. Three days out of the stupid air cast and my back is having fewer issues. I won't say its better, because that's not really an option, but it is less painful. We'll just leave it at that.

End of an (air cast) era

Yes its the end of the air cast era. However I am kind of sort of paying the price for not wearing it at all yesterday. My ankle is a tiny bit sore this morning. And I am sure that is enhanced by the 16 lb furball who walked on my ankle while 'patiently' waiting for breakfast this morning (it was 5 am - go away). So I am wearing my air cast while I wait for it to finish getting light out and go for my morning walk. Yesterday I had a VERY long day - worked 8-5 and was gone basically from 715am - 615pm. Which is a very long day for me. Today I will go for a walk, do some work from home and work about 930-345... And then go to a meeting. And pack. I have to do that sometime. I am not ready for vacation.

Now the biggest transition from the air cast era is to find all my left shoes. I have been wearing my right shoes only for over a month. So normally, you wear a pair of shoes and put them away together neatly in the closet (or, if you are a normal person, under your desk, next to the bed, in the living room, etc) but the point is they are together because you wore them together. Well I have two closets I can put shoes in (because I have two 10' clothes closets - yes really and they are mine and I am not sharing) and so some of the shoes are in one closet and some in the other - the rights and lefts are all separated now. So I have to find the matching shoes. Its hard enough to get out of the house in the morning with shoes that match the outfit much less find two matching shoes that match the outfit. It would probably be helpful if I matched up my shoes BEFORE vacation.)

But since I was out of my air cast for a whole day (and I wore matching shoes), my back is somewhat better. Well partially better. I have about two months until I go back to the back doctor so perhaps the new pain meds will now kick in now that I am walking evenly and my back will continue to improve. It is better since I started my new meds but since I started them the same day I got my air cast and have been walking funny, my back has been stressed and painful. So I will go back to being the patient patient (something I excel at these days) and wait and see how my back does.

Blogging and opinions

My blog is my opinion. Its that way because I write it. And yesterday I wrote about the rude jerk (who we saw again in the local diner where my husband and I went for breakfast yesterday). He sort of tried to get my attention again but I ignored him. Anyway, I am allowed to have my own opinion. Someone left a comment yesterday about how these things happen for a reason and maybe I should keep an open mind. What? Me, an open mind? I think I do have a relatively open mind. I don't have time for rude people who butt into conversations but in general I am pretty flexible and open to new ideas. But if they could cure cancer through energy healing and brass gongs, cancer would have gone away a long time ago. So buddy, get back to me when you have a real cure and not just snake oil. Me I'm leaving the solution to the research scientists who know what they are doing.

In the meantime, this week is a three day work week for us. Yesterday was Labor Day (well, doh, you knew that) and Friday we go off on vacation. This means I need to fit five days worth of work into three. And it means I need to leave for work in the next twenty minutes and not get home until around 6... A long day. Sigh. Maybe Walter will cook dinner. But tomorrow I work from home for a few hours and then go to work from 10-4. Thursday I'll work 8-3 or 4 and then do all kinds of fun things like take my computer off to rehab (a/k/a a computer tune up while we are out of town) and the cat off to his vacation (at my parents). Some how I am also supposed to pack and get organized.

I could have been more productive this weekend. Saturday was sailing. Sunday was I can't remember (chemo brain). Monday was gardening, work from home, run a bunch of errands. Now I remember Sunday - we ran errands and bought a living room sofa which will be delivered in October.

I was an air head yesterday and messed up my pills. I have two that I take the second I wake up because one of them needs to be taken on an empty stomach - 1 hour before or 2-3 hours after eating and not in combination with my calcium or prilosec. Then an hour later I take my back pills with food. Then a couple of hours later or sometime before dinner I take my vitamins. With dinner I take more back pills. Well, somehow, yesterday I took the wrong pills in the morning and skipped the empty stomach one. Well I figured this out about 6 pm as I was cooking dinner. So I took it not on an empty stomach and figure it might be a little less effective since it wasn't in optimal conditions but at least I took it. Today I paid more attention and got it right.

Yesterday I barely wore my stupid air cast. I am quite sick of it. Today I am not going to wear it but I will take it with me in case my ankle starts to act up. I went on a big walk yesterday which felt good but made my back hurt and made me tired. Wait, my back hurt from gardening with my stupid air cast on. Work involves lots of sitting with very short walks to the printer and the bathroom (both about 10' - in opposite directions of course).

But now I need to get moving so I can get out the door in the next 15 minutes - after I eat breakfast and get dressed.