Stepping away from Dr. Google

I did it again. I asked Dr Google about symptoms. What the hell was I thinking? I had myself mentally on the way to the Emergency Room to get some help before I died overnight. Then sanity prevailed, I shut off the computer and went to bed. I am still alive. But I have increased the list of questions for my doctor on Wednesday or whatever day it is that I see her.

Why do I ask Dr Google any questions any more? I have no idea. I should know better. I mean with my medical history, blah, blah, blah, I am always a special case I think. I am not normal. I need to accept that.

But the real question is what is normal? What is this damn new normal all cancer people are supposed to achieve anyway? I am not sure Dr Google would know anything about the fictional new normal in the first place. Maybe I need Dr. Oz instead.

Crap. I'll just go to real doctors for answers to real questions instead.

Things cancer has taught me

I found an article written about what she learned from her mother's cancer. I can tell you its also things I have learned:

1. Doctors do not have all the answers but that can be okay. I think we are taught that doctors know everything and will have the answer for every ache and pain. But with cancer we quickly learn they do not. But that can be okay. We can educate ourselves and remain satisfied with our care. Also we cannot expect the doctors to make the big decisions for us. They suggest courses of treatment but we can make our own decisions as to which ones to choose.
   I have learned not to follow blindly the medical guidance but to question and discuss decisions in ways I had never thought I would.
2. Sometimes patients don't want to talk about their cancer or other ailment. We are people. We do not live on the live reality station called "Cancer 24/7". We go to the grocery store, we shop on line, we go out to dinner, we have friends, we do laundry. Its sort of like the pages in People magazine where real stars are caught doing normal things - like playing in the park with their children or pumping gas.
   Cancer people are people too. So stop asking us how we "really" feel (with that knowing wink) every time you see us. Its annoying after a while.
3. There are many people can't deal with a cancer diagnosis. Those friends that brought you home made chicken noodle soup when you had the flu? Forget them, you may never see them again. The friends who stick by you are your real friends. You need to learn to make new friends who aren't scared of your diagnosis.
4. People are changed by their cancer diagnosis. There is some mystery about this new normal they are supposed to achieve (that doesn't really exist) but a cancer diagnosis is basically a life changing event. Cancer people have no control over this but they really do learn about what is more important in life and how physical limitations can change them.
5. Caregivers are also affected by the cancer diagnosis. They do not realize about the bonds they have to the patient and how the other person changes will affect them as well.

I have learned more but this is a start. A cancer diagnosis should come with an instruction booklet so we can find out what we are experiencing is normal.

It was a huge mistake

I have no idea what took over my brain/body yesterday. Before 10am had done the following:

• Reorganized the linen closet - removed everything, refolded it and put it back in an organized fashion.
• Cleaned and refilled spice bottles 
• Reorganized the pantry and got rid of some really expired food.

I don't know what I was thinking. I had no plans to do any of this. But then my fingers started inching as I was looking for towels and I couldn't find the ones I wanted. So I had pull everything out and refold and sort everything. I even got my husband to put everything back on the top shelf the way I wanted it.

Then I went down to the kitchen and made some cookies. While they were cooking, I cleaned up my mess and then put some spices back and realized the jars were sticky and needed refilling....

And I went to put ingredients back in the pantry and.... well you get it by now.

My husband needed a new pair of shoes. I suggested DSW and looked online to make sure they had the right shoes for him. He said I didn't need to go with him - I said 'Seriously? You thought I would pass up an opportunity to go shoe shopping?' He got what he wanted and I got a nice pair of Merrell sandals for next summer from the clearance rack.

Later in the day I paid the price with a sore back from standing and doing too many things. Crap. I took a tramadol and hung out on the couch for a few hours.

Young adults and cancer

I read an article on the Atlantic about the plight of young cancer patients. First of all, please do not use the word 'plight'. A plight is defined as: a condition, state, or situation, especially an unfavorable or unfortunate one. To me its another one of those sneaky, snarky labels with negative overtones. And the article also calls them survivors which is not my favorite term as well. A double negative for me.

Yes, life sucks after a cancer diagnosis. Particularly if you are younger and there are no others around with cancer to help you cope. I was one of them and I do not think that I had a plight. I had a life to live and figure out.

After cancer at any age, you are left with a mangled body, soul, and finances. I was luckier than most as my cancer did not require chemotherapy at age 19. My finances were covered through my parents' health insurance but I had the body and soul of a cancer patient.

Well back to the article. I did like it. I did like the information provided about the issues a young cancer patient is left with. If some one at age 20 is diagnosed with cancer, in addition to everything else, they are left with deciding what to do with their future. Maybe they were in college and were planning a career, now they have to decided can they finish their studies as previously planned and then go on with their career.

What about dating and children? Would a potential partner be turned off by their scars and medical history? Are they now damaged goods in the dating world? If you are diagnosed at age 60 which is somewhere closer to the average age at diagnosis for most, dating and children are no longer an issue.

And finances - take your average post college debt and add on top of that medical bills. Where does that leave the young adult with cancer starting their life after cancer?

Finally, how do you repair the damaged soul of a cancer patient? I can tell you it can take a very long time before you want to open up and talk about your medical crap with anyone - even a therapist. Healing is difficult, long term, and deeply scarring.

So next time you see a teenager or 20 something at the oncologists office, think about what they are going through and where they are starting the rest of their life. How do they get a to a new normal for their adulthood if they never had one in the first place?

On not being normal

If you find a truly 'normal' person, please let me know. No one is normal - its just a fact of life. But some people are more abnormal than others in different ways. Take me for example, I am very abnormal in the medical world. I have more medical ailments than my 80 something parents. 

All those health articles with tips for healthy living usually do not apply to me. I mean I can hydrate more but I can also floss more too.

Anything that relates to jump starting your metabolism to lose weight - um, I don't have a thyroid so its not going to do anything. Or more or different exercise - sorry, between RA, Fibromyalgia, lymphedema arm, and other injuries that never seem to go away - not happening.

I watch the ads on TV about the newest gym and fitness equipment - not going to do much for me. I go to my gym for dilapidated people and a trainer helps me through bumps in the health road. The  gym is running a contest this month for those who go the most often will be entered in a drawing for some big prize. I can't participate because I can't go more often. I couldn't participate in their last team challenge that was about increasing fitness. The team who increased their fitness the most won t-shirts or something - bragging rights? My goal is to maintain my fitness not increase it.

My three days a week at the gym are about my maximum. I do try to go for a walk once a week as well but that doesn't always work out.I can't just hop on my bike, sign up for a yoga or pilates class. The newest fitness apps? Doubtful.

The so called 'normal' people can lose weight by eating less and moving more. I can eat less but I can't move more.

I am not making excuses just expressing my frustration. I add medications that have that lovely weight gain feature and then I can't move more to counter act that. I try to eat less and it doesn't seem to help.

It could be compounded by that evil menopause (or in my case - chemopause) side effect of weight gain. It could be compounded by the fact that the office I work in has the tendency to bring in evil doughnuts and things like that.

I just need to accept I'm abnormal and my inner size eight is screaming to get out of the current size 12 body.

Back to Reality Monday

Its back to reality Monday around here. We had to set the alarm clock - just say we get up early and move slowly.

I haven't been to work since Christmas Eve. I meant to go in last Thursday and Friday but a tiny snowstorm prevented that. The last two weeks have been a whirlwind of holidays, house guests, cooking, chaos, movies, sleeping late, and not a single doctor appointment.

Back to reality starts this morning. I work Monday through Thursday this week for as late as I can, which might be 3pm. I have problems with a full work day and four days in a row is a stretch for me. Tomorrow I have a dentist appointment - what fun. I hope to make it to the gym three times this week. I also have to go for blood work at some point in the next few days.

Normal life returns. No more sleeping late, darn. We even got the cat to trained to request breakfast at 8am instead of 5am.

A Day Off!

Today is my first day off in months. Seriously. You may be thinking but she only works part time, she has lots of time off. My life is full of lots of obligations.

• Doctors appointments - none this week.
• Volunteer work
• Craft fairs - almost caught up.
• A huge DOD peer review project which ended just before the holidays (and I was very honored to participate but it took a lot of time).
• Research - webinars etc for work
• Planning, shopping, and cooking for Thanksgiving
• Spending time with family
• Spending time with friends
• Cleaning, making beds, and spending time with house guests
• Not getting overtired

Yesterday was recovery day from Thanksgiving. The houseguests were gone so we had to clean up and do laundry, go to the gym and all the normal things one does. My husband also wanted to put out the holiday lights but it was a little rainy. We also have stuff to put away after accomodating five house guests for several nights.

At some point in the afternoon I realized that I had no plans for today. Well almost none. I mean I am meeting a friend for a walk at 1230. I slept until 8am. I wandered around and fed the cat who was mad because he was reduced to eating dried food which he hates.

Then I read the paper looking for that cancer cure in the health section on Mondays as I optimistically do each week, hopped on FB to catch up with my friends, read blogs, think about cyber Monday shopping and then I started on my email.

There was a message from my husband reminding me (eek!) that he is bringing teriyaki chicken wings to work tomorrow for a potluck for 30 people. To be fair he did offer to go to the grocery store for the chicken and whatever else we need. And he did tell me about it weeks ago but evidently we both forgot.

That was a quick change of plans. I could  not find my decades old, much requested recipe for wings. Plan B, I called a friend of mine who also makes good wings for parties. She gave me her recipe (which is a secret - not! Take a jar of low sodium Kikkoman marinade and baste and pour over wings) which forced me to take a shower, get dressed, brush my teeth, and get to the grocery store asap (where I ran into a lady who was shopping in her PJs).

Today I now have lots to do. My friend will be here in five minutes to walk. I have to come up with something for dinner. Then once my husband gets home, there will be a few more things to do - like cook chicken wings, get the crock pot ready for tomorrow). Then there is a little pile of bedding to get put back in bags in the basement and fold five loads laundry that never made it back upstairs so I have to wait until my husband gets home.

So basically today I get to pretend I am a normal person without any health issues and just take care of life. That is very unusual.