What A Beautiful Day!

After I stretch, I'm going out for my last long run before the Boston MArathon. I'll stick to a few shorter runs between now and then. I did well enough int he New York Marathon two years ago to qualify for Boston. Next year, I might run London again or maybe switch to tris...I mean why not, I'm doing pretty well these days.

Tomorrow my husband and I are going to clean out the garage and power wash the floor. We have a lot of heavy stuff to move out but I think I can do it. I'll probably paint the dining room later.

Next week, I'm going to focus on weight training and do the spring yard clean up. Its full of debris from the winter's storms.




APRIL FOOL!


Today its snowing to beat the band and my back hurts..... Did I get you? I'm no healthier than I was yesterday - which is not very healthy at all.

"Ma'am, on a scale of one to ten, with ten being the healthiest, can you tell me how healthy you are?"

"I believe I'm a negative 37....."

My Health Is Trying My Patience

What if I could be normal and when I tried to be a healthy person I could actually do it without having to spend time recovering?

Yesterday by the time I got home I was exhausted. I had had a very long day. What did I do? Got my hair cut, went to the gym and a doctor appointment. I had to lie down for a while. I left my house at 1030am and got home at 430pm. Six hours?

My original schedule for yesterday included a 930 appointment at the gym. I decided that would probably be too much for me and rescheduled. I knew I had down time during the day and was going to go visit my parents for a bit. But then I got the brain storm to shorten my day. Its one thing to skip the gym or the grocery store because I was too tired but its another to skip a doctor appointment.

So anyway, my health is seriously trying my patience and I am sick of fed up with it. If I can't manage six hours out of the house, including a good hour sitting down, what am I supposed to do? Just stay home and rot? Grrr.....

Call me frustrated. I think I can manage today. All I have to do is go to my knitting group and come home. A much shorter day.

A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

• surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
• dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.

I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

Managing Weird Symptoms

So we all get these weird feelings sometimes. Something starts aching, or tingling, or twitching, or pinching, or just not feeling right. We start having little debates with ourselves (where it is perfectly acceptable to talk to yourself, ask yourself questions, and answer yourself back) how long has it been going on, is it that big a deal, do we want to go to the doctor, do we need to get some medical care (if dripping blood, the answer always apply pressure and get to the ER stat). Then we try to make decisions on what to do and when to call the doctor, or not.

Eventually, it goes away or gets better (with or without medical care) and we move on. We might have a scar or a bottle of left over prescription pills and or a pile of bandages we stick in the back of the closet. Or do we move on, can we move on?

I have found that before my second cancer, every medical misadventure just went by the wayside. I didn't overthink anything because it wasn't really that important. Well, I do admit to asking about potential cancer crap because of my first diagnosis once in a while but I never really stressed.

Now I have to institute the five day and two week rules to prevent over-stressing and too many doctor appointments. The time limit means if something is not getting better within the time frame, its time for a doctor. Significant ailments, like extreme pain, very high fever get the five day. Anything else is on the two week rule. If I make myself wait, usually I end up not needing the doctor, or so I make myself think.

Part of relearning to be a semi-normal person after cancer treatment is learning how to handle potential ailments. I cannot let myself fall into the trap where every new symptom is a really BAD thing.

I also have learned that I need to learn to tell the story about any symptom when I get to my doctor (my old PCP taught me this). I shouldn't go to the doctor and say 'this hurts'. I need to go to the doctor and say 'this hurts, for this long, when I do this, and this is what I have done to try to deal with it'.

But with two cancer diagnoses, my tolerance for symptoms is very different. Somethings I tolerate a lot of and somethings I tolerate none of. Its my body and I get a lot of the same reaction from medical professionals - I have a lot going on medically and am not the run of the mill patient. So its up to me to make sure the medical people understand what I need and how to make me feel better (if possible).

Okay, this is a long and whiny post on me and my weird symptoms and how I deal. Frankly, I just want to be healthy again...

Making Breast Cancer Friends

You have breast cancer, I have breast cancer, we are now friends.... For life. That's just the way it works.

It also works with people with other types of cancer or other chronic ailments. There is a bond.

Stop by the chemo waiting room and you will find it full of people who become friends because they share a common bond - cancer.

Before breast cancer, I wasn't as open about my health (and I was a lot healthier) and I wasn't as quick to jump on the cancer bandwagon and make new friends. But now, its different. If you are open about your medical crap with me and we have similar diagnoses, we will be instant BFFs.

Many others do the same. I hope even more will.

Damn The Mutations, Full Speed Ahead

So now they want to tell us that cancer is mostly the result of genetic mutations, as opposed to other factors. I'm not sure how much of this I want to believe but I'll just say 'damn the mutations, full speed ahead'.

Cancer causes are supposedly:

• 66% - mutations when cells replace themselves
• 29% -  environmental factors
• 5% - hereditary factors

So can we stop blaming our parents and our bad diets, and just assume none of it is our fault? Probably not.

As a normal part of life, cells divide and multiply and little mistakes happen all the time. Its just that sometimes they turn into cancer....

"Lifestyle factors still matter for cancer prevention.

Just one mutation is not sufficient to cause cancer -- typically three or more mutations must occur, Tomasetti noted. If, say, your cells miscopy DNA and so cause two random mutations, a third mutation is still needed. Obesity, smoking, lack of exercise and poor eating habits might supply that necessary third gene defect that tips your body into a disease state."

So go eat a salad, quit smoking, and go to the gym. And for those of us who were already doing all of those and still got cancer, can we please just blame bad luck and not blame ourselves?

I Am Rebelling

Sometimes I need to let my inner rebel out and stop being such a good patient. I usually try to be a good patient (and go to my appointments, take my meds as prescribed, talk to my doctors honestly and generally do what they want me to). But not right now.

Last fall I was told I have sleep apnea and my doctors want me to have a CPAP machine for sleeping. I got my CPAP machine and hate it. I can't stand having anything on my face while I sleep. I am on my second mask and still cannot deal with it. I wake up and want to rip it off my face. If I sleep with the mask on, I don't ever feel rested and have the weirdest dreams.

I went back to my NP for the sleep department yesterday to talk about how I am doing with my (damn) CPAP machine. She said that because of the problems I am having, I could go to a plastic surgeon and they would do some kind of 'adjustment' and then I wouldn't need a machine. (The idea of any kind of surgery like that makes my skin crawl.) Since I have rheumatoid arthritis, no one wants to operate on me because I will not heal well. So we nixed that idea.

My next step is to go see the sleep clinic for CPAP mask for desensitization therapy to get used to the (damn) mask. I am not sure this is going to work for me. I have already tried everything from taking naps with the mask, wearing it when not trying to sleep and just resting, but its not working.

If I fall asleep with it, I end up taking it off shortly afterward because I can't sleep with it. And the whole point of a CPAP machine is to sleep better. I haven't slept better with it at all. And I got it at the end of January.

This is a long way of saying that, while I am willing to actually try a little more to get used to the (damn) mask, I am running out of patience and am not going to try that hard based on two months of treatment so far. Frankly, I do not expect the machine to work for me at all. So my inner rebel is saying, while I will give it a try, I am done making a giant effort.

The (damn) mask has been hanging on the back of the bathroom door for a couple of weeks. It is staying there until they explain the desensitivity therapy to me and I get to try it.

I know apnea leaves to all sorts of issues including fatigue, sleepiness, weight gain, snoring, etc. I also know that I really hate the (damn) mask.