Once Upon A Time, I Was A Healthy Person

I have many friends who, after cancer, get back to their old lives for the most part. I'm not talking about that 'new normal' bull, but just doing normal things like going back to work, taking part in all their family activities and all sorts of regular, every day life things.

Me, I did not get to go back to my regular life after breast cancer. My body had other plans for me. It decided it was time to fall apart.

After breast cancer, I got gall stones and had my gallbladder out six months after radiation ended. That winter I slipped on the ice, landed on my left hand and started all my lymphedema crap.

The following fall my back started hurting. When I realized I was taking OTC pain meds every day, I went to the doctor. I ended up being diagnosed with degenerating disks among other things. Later I sprained my ankle badly that included bone chips. I also hurt my right knee, again - previously injured skiing in 2001.

That went on fine until three years later when I was diagnosed with rheumatoid arthritis and fibromyalgia which is a whole barrel of fun. In 2015, I fell in my backyard and managed to tear my ACL in my left knee.

What else? I don't know. I have had basic dental stuff, possible recurrence with thyroid cancer that turned out to be nothing, and I can't remember anything. I have been to PT probably five times for different ailments.

So, I am not a healthy person post cancer. I have a very dilapidated body post two cancers. I must be 'healthy' due to all the medications I take and the doctor appointments that I have. In the first five months of this year, I have had 27 appointments with doctors and dentists.

I'm still here. I may not be the healthy person I once was. But I am here.

Heeding Advice and Enjoying Life

With any ailment, you get advice. Some of it is nice, sane, logical, and seems plausible - like rest, hydrate, elevate, ice it, if pain starts - stop what I am doing, etc. This is possible. You can do it. And some of it, not so much - keep elevated for at least 30 minutes out of each hour or at least 5 portions of fruits or vegetables with every meal. Really? I can try for that. And finally, some of it is just plain impossible - lose 30 pounds or non-weight bearing at all times for six weeks or anything that is just too restrictive to handle.

My point is I get a lot of advice from my doctors, and a lot of other people. I selectively heed it. I mean if I listened to everyone I wouldn't have a life, I would be really boring. And there is a point where I just can't do any more.

I have made the following life changes in recent years:

• I gave up smoking. I never was a heavy smoker (5 cigarettes a day) but I did smoke for a long time. 
• I exercise three times a week. I get 60 minutes of cardio and then 30 minutes of weights and resistance training, followed by stretching.
• I try to eat healthy. Fruit and vegetables are a big part of my diet. I also skip packaged food as much as possible. I avoid desserts and a lot of sugar as much as possible. I skip salt as much as possible.
• I pace myself and get rest and make sure I do not over do things. 
• I take my medications as directed, go to my doctor appointments, and listen to my doctors.

But there are other things I am not going to give up:

• Wine. I like drinking wine. I enjoy a glass of wine with dinner. I do not go bar hopping (in fact I can't remember the last time I went to a bar). But I like a glass of wine.
• Red meat and bacon. I don't eat bacon cheese burgers all the time. But a nice steak on the grill or bacon for breakfast sometimes is nice.
• Gardening. I have been told not to sweep, vacuum, rake, mop, lift weights, bend down, or carry things. But I love my garden. I want to grow my garden (more healthy veggies). I can get myself in a lot of pain by gardening. So I leave all the heavy lifting to my husband but I get out in my garden every day I can.
• Bad TV and romance novels. Why not? Its my brain (or what's left of it) to rot.

What it comes down to is I need to be able to enjoy my life. I want to enjoy my food and drink. I want to do things I like to do. I can't be boring.

I Overdid Things

Who me? Yes. But I had a lot of fun. We have house guests and yesterday we went to the Boston Harbor Islands and out to dinner. I had planned not to do too much but I guess I don't follow even my own directions too well.

We drove to Boston and parked in the really close but expensive parking garage. We got on the boat and I sat. Then we went to Georges Island where I sat and did not walk around. Then we got back on the boat and I sat. Then we went out to dinner and came home. I was exhausted. Everything hurt.

Today I will pay the price. I will do a lot of nothing. Well one of our house guests is going to show me how to use my new 4 harness loom (it looks very complicated). Another friend is coming over for dinner and to knit. I will do a lot of sitting and maybe even lie down for a few hours. Tomorrow after brunch I will also plan on lying down.

But it was a great time.

Doing Too Much!

Of course I have over-scheduled myself for the next few days weeks. I am going to hate myself.

It all started when we decided to have a party, sort of an open house. Originally we thought we would do it in the middle of January, just after we moved in. Obviously that schedule was pushed back. Finally we bit the bullet and picked this Saturday as the date. (And if you are looking for your invitation, maybe its in your spam filter.) So we have a few things to do this week.

I have to finish painting our bedroom. Its been half painted since the end of March. I put on a coat of primer last week and the first coat of paint this morning. I have to finish before the cleaning lady comes on Wednesday. (We don't want it to look half painted at our party because it is just plain ugly half painted.)

I also have to do laundry (5 loads give or take) and dig up some jerusalem artichokes from a friend tomorrow. Later this week I have two training phone calls for my replacements at work, getting my hair and nails done (I can be such a girl), my knitting group, the grocery store, start preparing food, have the party and then collapse.

But I can't collapse. Sunday I promised myself I would go to the NH Sheep and Wool festival.  I am going if it kills me. I just learned about Sheep and Wool festivals from someone in my knitting group. Who knew they happen all over the place every spring. I can't wait. If I have any energy at all I am going.

I know I am doing way too much. I know its not going to easy on me. But we have really looked forward to the party. And I really want to go to the Sheep and Wool festival. These are both important to me. I know its going to be a lot. But I will make sure I get plenty of sleep and rest between all these activities.

Part of being me, I keep doing what is important to me. I am not going to give in to all my ailments and sit around. I also want to enjoy myself.

A plateau

Right now I seem to be at a plateau. My health has not gone too wonky in the past few months. I have nothing looming which should change this. 'Should' is the operative word here as there are no guarantees with life in cancerland. But I am feeling optimistic.

Physically I feel okay, except for my back which is having a procedure in a few weeks which should help with the pain I am having. Okay, well my feet are another story but I have a new pair of shoes which should help.

Emotionally I think I am in a fairly good place as well. Most of my emotional problems are the result of physical problems. My continued physical downward spiral in the last seven years has taken a huge toll on me emotionally. Every year I can look back and think "I could do that last year but this year I can't even think of it". How's that for the fun part of life?

But I feel I am at some nice stable plateau where I can continue with my life and not fall apart anytime soon (I hope). My stress level is down. My fall craft season is looming which will hog all weekends from Veterans Day to Christmas as well as take up a lot of my spare time as I always have something to work on.

I guess this means I am doing all right for now.

I'm running out of doctor's appointments

I got my latest appointment list from the hospital. I was shocked to realize that I only have eight scheduled appointments. Total. That's amazing. I haven't had less than ten scheduled appointments (which is the most shown on the appointment list) in years.

On one level this makes me very happy. I am sick of being sick and going to the doctor. I spend way too much time there. I have been making a concerted effort to cut back on unnecessary doctor appointments. I have opted out of some doctors simply because I don't think they do me much good. I cancelled my appointment with my radiation oncologist because I have no idea why I am still seeing her.

On the other hand, with the constant doctor appointments comes a sense of a safety net - nothing that bad can be found at a doctor appointment if someone else has seen you just a couple of months before. This can be seen with cancer patients facing the end of active treatment when their oncologist says 'all done, see you in six months' and all the continual follow up ends. This is when the most cancer patients fall apart - their safety net has ended.

When I hit the end of active treatment, I got a therapist who I still see monthly and my health continued its downward spiral so I saw doctors constantly. Finally seven years after my diagnosis, six years after active treatment, my health is stabilizing (or so it seems today) and I stop seeing doctors as often.

Now I am down to a PCP annually, rheumatologist every three months, pain doctor every four months or so, endocrinologist annually, oncologist annually - maybe not any more after the next appointment, dermatologist annually, therapist monthly, and meds therapist twice a year I hope. That works out to 11 appointments a year plus 14 for my mental health. I can live with 25 total appointments. Plus dentist twice a year and periodontist twice a year. So 29 appointments. Plus a mammogram is 30 appointments. Which is really 12 medical, 14 mental and 4 dental. If I split it up, it sounds better. Or I need back injections. Damn I guess I don't have only a few appointments.

Unless of course something happens.

I will push that looming thought out of my brain because I need to 'grow up' (is that a good term?) and get past the 'being sick' stage of my life for now. I need a being healthy stage of my life for now so I can do the things I enjoy and not go to the damn doctor. That would make me much happier.

Stability

The goal of most medical ailments is either stability or remission, where the ailment isn't getting worse or is actually improving. It is kind of a happy place where you almost get to feel normal again. But we know you can't go home again so normal is a relative term.

However, I had the opportunity to speak with the nurse at Accordant care yesterday. She is provided through my health insurance and is available for my support whenever I want. It has been a while since we did catch up so we had to review a lot. At the end of the conversation she said "you seem to be doing pretty well these days". I had to stop and think. But yes I am.

I mean other than my evil 9 day stomach flu, I haven't been hobbling around and my body has mostly cooperated when things that I wanted to do. I haven't tried to run a marathon or anything but I have been able to do most of the things I want and not end up in pain in bed for a few days. This is good. This means that both my fibromyalgia and RA are behaving themselves which means I can behave myself less and do more of the things I like to do.

All my other ailments, that cancer crap, seems to be behaving themselves as well.

Now I am not running a marathon, as I said, but I might want to climb a small mountain or something. Or maybe I'll settle for a big hill. Or even a long walk.