Losing Track of Time

I haven't worked really in a year and a half. I have no reason to watch the clock very much - except for doctor appointments. I never look at a calendar. I have to think to figure out what day of the week it is - and am often wrong.

I completely lose track of time.

I was talking to a friend yesterday and she said that her problem she couldn't remember anything. I never can remember anything either but I find losing time is more important. Priorities I guess.

This also causes me to forget to blog.

Maybe I should try wearing a watch again. But I can't because of lymphedema and RA.

Exercise for Memory???? Or Cancer Causes Stress.

A new study (because we all new more studies) says that exercise can boost memory for breast cancer patients. What? I exercise and my memory is shot, getting worse every day. I don't believe it.

The theory is that exercise alleviates stress and benefits women psychologically which improves their memory.

"A surprising finding is memory problems appear to be related to the high stress load cancer survivors experience, and may not be specific to chemotherapy or radiation treatments."

That's surprising? To me this is even more important than figuring out that exercise improves memory. Seriously, I could have told you that a cancer diagnosis causes incredible stress. It just amazes me how many people do not get that part. Obviously they haven't been diagnosed with cancer. 

Most Embarrassing Cancer Moments

I think everyone has embarrassing moments in their life. I mean who didn't awkwardly walk into a wall at one point, trip as they entered a room or a building, or realized you got home and you had a toothpaste stain on your shirt since morning - after having a big meeting at work.

My famous embarrassing moments in life include also coming back to the hotel at the end a day at a very busy and important conference and realizing I had been wearing one blue shoe and one black shoe all day long.

But my mortifying cancer moments include:

• Needing a quick appointment with  my cancer surgeon and realizing after he didn't come back for 1.5 hours in the exam room that maybe I was really done with that appointment. (Yes I waited for that long before going to ask the nurses if he was coming back.) And then I had to wait longer for him to come back and tell me that everything was okay. So much for a quick appointment.
• While riding home from chemo with my husband driving, we stopped at a light. When my husband pulled away from the light my wig went flying in to the back seat! Leaving me bald in the front seat.
• After waking up in post op after my thyroid cancer surgery, I was not upset not because I had cancer but because I was wearing a clean gown and the doctors and nurses therefore had seen me naked. (Talk about twisted priorities!)

Those are all I can remember at this point. But I am sure there are more. I hope other cancer people can relate.....

I'm taxing my brain here

These Internet hackers have to stop! They are taxing my brain! The latest is the heartbleed virus or bug or whatever it is that is forcing all of us to change our Facebook, Google (which includes Blogger, Google plus, Youtube and all sorts of other places), Yahoo, and Wikipedia among others. This is very annoying.

To reset passwords, its not as easy these days as logging in and going to account settings and bingo you are done. First they want you to remember your old password - I have no idea. I set up everything so the computer remembers it for me. Then you need to come up with a secure password which meets their criteria of enough characters, but not too many, with capitalization, numbers, and 'special characters'. Sometimes they insist on sending you a text to verify you really are you. And the new password can't be anything you have used before.

Then you need to go around and update all your devices where you use these accounts. My laptop, tablet, nook, and phone to start.

Finally you need to remember the new password. Do you have a secure system for saving your passwords? Do you keep it in an unsecured document on your computer? Do you keep it in a bunch of little cards where they are written down and scribbled updates? Do you hide it in your address book?

I have no brain. So when the world converted to the digital age from the analog one. I kept my Rolodex. It contains a few addresses that I haven't transferred and my passwords. I feel this is a very secure system. If a burglar breaks in they have to decipher my handwriting and figure out which website each belongs to. I feel this is very secure. But it has its drawbacks.

I have to remember to update it. And that doesn't always happen. I have to walk over to it and update the information. I know that recently I opened a new credit card and set up an online account but I didn't write down my log in information. I am a loser. I'll have to remember it to pay my bill, or just reset it this month when I pay.... Just like I did last month.... And the month before...

But all of this is taxing my brain. I have no brain. This is a known fact. I can't remember shit. If you tell me something today, I can guarantee I won't remember it tomorrow. I have to go write down my new passwords now before I forget and my brain is overtaxed for the day.

You would think I had this under control

I never remember to take my pills. There I said it. Its a combination of being a space shot and well... being a space shot. I remember my morning thyroid pill 99.9% of the time. Its been 32 years so you think I had that one down pat. Then the rest of my day gets complicated.

I have a whole pile of pills that I take at dinner time. 98% of the time that happens as well.

But the rest of them, forget it.

Here are the complicated ones:

• I am supposed to split up my calcium pills and take one in the morning and one in the evening in the 'pile'. That never happens. I have to take it four hours after my thyroid pill which puts it in the middle of the day. I NEVER remember that one.
• I am supposed to take a different a Xantac in the morning. Ditto with four hours after my thyroid pill, ditto with NEVER remembering.
• I am supposed to take pain pills as I need them every four hours or so through the day. Then I am supposed to take one last one just before bed. I am at about 40% on that one.
• I am supposed to take Lyrica twice a day for my fibromyalgia. I am running about 30% on that one. I really have to figure it out. I can take it an hour after I take my thyroid pill which helps because I usually am still at home. But yesterday I remembered on the way to work, put a note on my phone so I took it at 3 pm when I got home from work. I said I would take the second one just before bed. That didn't happen. I dropped it into the cat's water glass on the bedside table and it was floating there this morning.... (Yes the cat has a water glass because otherwise he would drink out of my water glass.)

I have on of those daily pill boxes and use it. What I think I need is a separate pill box to split up the ones I need to take throughout the day. Damn. I have to do something. I do not have it under control and am not willing to lie to my doctors about it. They can get very pushy which they should.

Hobbling around made me forget

Sunday was a bad day for me - I helped at an event on Saturday night and was out for about three hours but evidently I stood up too much. Sunday I was in so much pain I would have preferred to spend the day taking it easy but I sucked it up, took a tramadol and met some friends for lunch. Monday wasn't much better. I made  it out for a walk with a friend.

Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.

Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.

Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are  not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.

Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.

So what do your doctors write about you?

Don't you ever wonder? You see your doctor, you ask your questions, get your answers, maybe some new recommendations and follow ups, and are on your merry way home. At some point after they see  you, your doctor writes down notes about your appointment. Do you ever wonder what they say about you?

I have had some infrequent opportunities to see my medical records. Partly by happenstance and partly by choice. Some of it is crystal clear and makes sense and some of it requires a decoder ring - that my surgeon provided at the time. I found it interesting.

There was a recent voluntary study (because we need more studies) where doctors shared their notes regularly with their patients who wanted them. They found better compliance with doctor orders among other things.

I know I can go to the hospital where I am treated and get a specific test result for no charge but if I want my full records it will basically cost me $100 for the first 100 pages and then $0.36/page after that. With my  medical file, I'm probably looking at around $1000 for the whole thing. That's just fine. They can stay there.

But I do have a friend who found out what her doctor wrote about her in her medical record - it was something along the lines of 'she will never lose weight because on weekends she drinks a lot and pigs out'. Seriously that's what the doctor wrote. That is now her former doctor. And she got a patient advocate to help in getting that removed from her permanent medical record.

I am sure my doctors write things like "paranoid, chronic complainer, pushy, bitchy, hypochondriac, full of mysterious ailments who uses more than her share of the medical system" in my medical file. Actually I don't think they write that.  I am sure its a very fat file hogging lots of disk space. But most of its probably in doctor speak and I didn't get the decoder ring.

Would a written note at the end of each appointment help my chemobrain/fibro fog memory remember what I am supposed to do and why help me? Probably but I don't need more paper in my life. And I don't want to have to wait until they doctor gets around to writing the notes either.

My incompetence has reached new levels

I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.

I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.

I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.

This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.

Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.

Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take  tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.

So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.

So where do I fit in?

I whine about chemo brain and lack of brain cells overall. Apparently now I am doomed. After age 50, your brain starts to shrink. So where does that leave me?

There are things you can do to reduce risk of memory loss.

- Dance - its social and exercise. It makes you interact with people and you get physically fit.
- Exercise - it grows your brain. Who knew you could reduce your waistline and increase your brain size simultaneously. This takes multi-tasking to a new level.
- Start young - I've been fairly athletic my whole life and my mother used to feed us lots of vegetables and tofu. We still eat lots of vegetables to my husband's dismay.
- Eat right - I usually do. 3 meals a day, minimal snacking, lots of home made, very little prepackaged.

Well I don't dance... I think I no longer have the coordination. But I do exercise, I have been fairly athletic my who life. I don't eat prepared food. I think I did got to a fast food restaurant this year while traveling but think we ate semi healthily.

But my problem is I am starting with lack of brain cells already. So where do I fit in if I am starting from last place? Examples of my lack of brain cells in recent days are:

- I spent two days looking for the damn spray bottle so I could work on blocking some knitting. I couldn't find it ANYWHERE. I looked all over the house. I asked my husband. I couldn't find it. I gave up and bought a new one on the way home from work last night. 15 minutes after I got home I found it on the kitchen counter, tucked into the corner right in front of me.

- I got to the gym the other day with a pair of sneakers to work out in. I had two rights, from different pairs.

- I ordered something online recently. It showed up yesterday. I stood there and stared at the package. What did I order? I couldn't remember. Was it a mail bomb? I had no idea. Then I opened it and realized I had ordered it.

Need more examples? I can go on. These are daily ocurences.Feel free to ask my husband. He finds my lack of brain cells extremely humorous.