Declining Health Abilities

Yesterday, a friend and I went to the NH Sheep and Wool Festival. We are knitters,weavers, etc and bona fide yarn junkies so it was the perfect trip. However, we got exhausted. We even went and napped in the car in the afternoon so we could make it to the events we wanted to see.

On the way up, we talked about our declining parent's health. Her father is in his early 90s, my parents are in their late 80s. All of them have physically declined over the years, as would be expected for their age, but mentally are going fine.

This morning the two of us feel beat up and are exhausted after yesterday's walking and sitting. And napping. Today we are feeling closer to our parent's ages than our ages (37 still in case you are asking). I slept a solid 10 hours last night and that helps me a lot to get through today.

Days like this make me realize how much my health abilities have declined, similar to my parents. But I feel it is more expected for them than for us.

I am not trying to run a marathon, something that I have never dreamed of doing, or even go on a 15 mile hike as I have in the past. I am talking going for a day of fun which included more sitting than walking.

I realize I am getting older but I think my brain thinks I am 37 but my body thinks I'm 80. And its just not fair.

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Change

I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

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*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!

Aging or health issues

Today I volunteer at a local conference. I have to be there shortly so need to leave asap (and its 6:13 AM as I write this). Its an annual conference for my professional life. I have volunteered there for several years. Maybe 7, maybe 9? I can't remember any more.

But this will be the last year. Getting up so early is now difficult for me. And being on my feet for a few hours isn't going to work either. Usually I stay for most of the conference but this year, I'll probably head home after the morning keynote speech.

Yesterday I had a doctor's appointment as a follow up for a test where I had not so good results. The doctor said some of the issues I experience could just be part of aging. But I have more tests to confirm this.

So my question for myself is aging part of my problems these days or are my limitations due to health issues? I always blame my health issues for any problems I have and not aging. I don't consider myself as old, but I could join AARP at this point. The majority of my health diagnoses have been accompanied by 'you are too young for this'. Maybe my age is catching up to my health.

When do we start feeling old?

Cancer diagnoses have never made me feel old but lots of other things do.

• Having clothing longer than my co-workers have lived
• Being older than my bosses
• Being older than my doctors by a decade or so
• Referring to young people as the younger generation when discussing clothing styles and tattoo preferences.
• Remembering the good old days when you could get bleacher tickets to the Red Sox to sit on benches for just a couple of bucks.
• Remembering black and white TV with three channels, five ice cream cones for a dollar, movies for a dollar.
• Remembering when computers were for dorks and geeks.

Being told I am too young to have all these ailments does not make me feel old. It makes me appreciate being so young.

Life expectancy thoughts

You get diagnosed with cancer and saving for retirement gets lower down the list of important things to do. Then you get diagnosed with cancer again and it really becomes less important and sometimes even slips into the category of  'why bother'.

But then you bounce back and start thinking long term again, slower than before, but still making plans seems worth while. Or should I just save my money and have a really huge party for my memorial service propped up in the corner in a casket?

Life expectancy charts are for other people because with a couple of cancer diagnoses and friends dying from cancer around you, your life expectancy is different.

That is the little chain of thoughts in my head.

Then I find out that rheumatoid arthritis no longer affects life expectancy as much as it once did but can put a damper on it.

Then I found an online life expectancy calculator. It does not ask how many times I have had cancer only if first degree relatives have had certain types of cancer. It says I have a 75% chance of making it to 83, a 50% chance of making it to 94 and a 25% chance of making it to 102. But since it does not take into account all my health issues, you may call me skeptical. 

So where does that leave me? I don't really know. I'm still here and I guess I am happy with that.

Changes

I am going on vacation again (and a note to burglars - my husband is not and will stay home and be protected by the cat while I am gone). This time I am going with a friend who I have often vacationed with over the years and have known for more than 30 years (now I feel old). We have gone on various adventures in the Northeast and Midwest over the years. These have included a trip to Duluth (with a Deliverance moment), a trip to Bayfield, WI and to see the headwaters of the Mississippi in Itaska, MN.

Just last year we went (with our men - they are not always allowed) to Boothbay Harbor, ME and took a day trip to Monhegan Island where my husband and I hiked all over.

This week we are heading to Burlington VT to look for soap makers, cheese  makers, yarn, glass blowers, potters and weavers and will stop at Basketville and Webs on the way home.

In the past we have been relatively energetic and able to do things like go for a walk and go shopping without a break in between. The difference is that this year I do not have the energy and strength I had last year to do much. This will be a change. I will not be up to not nearly as much activity.

I have realized my body has changed significantly in the past year. I am not able to do what I used to. I have to take a lot more breaks and rest a lot more. I went from feeling like a 30 something most of the time to feeling like a 70 something way too often.

I know its part of getting older by  my aging went way too fast.

I overslept or life with fibro and RA

What an exciting blog post you say? She over slept. She is boring. Well I never claimed to live an exciting life. I really don't. I am boring in general - except for the medical stuff. My life is a veritable snooze button.

Yesterday I was exhausted. I mean I worked longer than I normally do and felt exhausted. I drove myself to the gym and actually worked out - through some miracle. I came home and put on my pjs and got in bed at 5pm. I did get up and eat some left overs around 7, watched Jeopardy and was back in bed at 8. Then we  overslept.

I did not hear the alarm go off repeatedly. My husband is in charge of the snooze alarm. We only over slept by about 30 minutes but that has a (what's the word I want - one little issue turns into giant ones?) effect. No homemade lunches today. My husband got a pear for breakfast. I will have a banana and yogurt which I will eat either in the car (the banana) or when I get to work (yogurt) - it is not possible to eat yogurt and drive.

I was looking for an excuse to get take out for lunch today anyway and now I have it.

One of the advantages of my current job is that I can make my own schedule so I won't technically be late. The biggest problem in my commute is school buses,  Once I motivate I can get out of here fairly quickly.

Because of fibromyalgia and RA I need a lot of naps. I did too much for the past few days and ran out of nap time. Even if I don't nap, I need time to lie down and do nothing to recover from grocery shopping or something.

The fatigue levels I hit are pretty amazing. Sort of like being back in chemo again where napping and sitting around in a daze were considered quality life. But the Fibro/RA lifestyle does not allow the fatigue to go away, ever.

I am still lying in bed - but I have read my email, caught up on FB, and am now blogging so I am productive - drinking coffee. Shortly I will hop in the shower, go to work, then the farmers market, and then get my nails done. That will require a brief nap before going out to dinner to celebrate.

Today is my birthday (I'm 37 if you must know, but I was 37 last year and the year before and the year before...) and we are going to celebrate. Out to dinner tonight so I have to be able to stay up until 8 pm.

I used to think when I hit 40 I would start opening up about my cancer, but I didn't. Procrastination at its finest. Why do something now when you can put it off for 20 years? Then I said when I hit 50 I would. But life interfered and I got breast cancer and started opening up much earlier.

Now I think everyone in the world knows how unhealthy I am and I appreciate birthdays more. But I don't believe changing the number is important each year - its just one more thing to remember in life - so I used to be 29 and then I eventually moved on to 37. At some point I'll pick another age an stick with that one.

But in the meantime, I will enjoy my life with fibro fog, RA pains, chemobrain, and celebrate the day, now that I finally woke up.

Too many of us aging

We are getting older so will there be enough doctors to care for us?  Especially for cancer care?

And will we understand our options?

Us baby boomers need to stop aging to doctors can catch up with us. We are reaching the, and I quote, 'tumor prone years' as a generation. (I hope I have already had my share of tumors, thank you.)

In addition, oncology is a quickly evolving medicine these days - personalized medicine being on the forefront - as scientists are racing to find a cure for cancer. The doctors have lots to keep up on.

Patients do too. They need to stay informed on their options and understand what treatments are curative (good word) vs. which are palliative (bad word). We need new ways to help patients understand their options.

Finally treatments are getting more complex and not necessarily very helpful. "Of 13 cancer treatments approved by the FDA last year, only one was proven to extend survival by more than a median of six months, the report said. The drugs all cost more than $5,900 for each month of treatment."

Ouch! (That's over $70,000 per year... but wait no one is living long enough to take it for a year.)

Finally, here is a list of recommended questions for patients facing a cancer diagnosis:

• How long does the average person with this cancer live?
• What is my likelihood of a cure?
• If I cannot be cured, will I live longer with treatment? How much longer?
• Will this care directly treat the cancer?
• What are the side effects?
• Am I eligible for trials?

If your health team does not have answers, “you need to find another set of providers,” Ganz said.

So if we all could just stop aging, and let the medical world catch up, we might be better off. I am still 37 so I am doing my part.

Aging

I often look around and see people my age and think 'they look old'. I mean if I run into someone I went to high school with and they have gray hair and wrinkles, I think they look old. I hope I don't look that old, ever.

Yesterday at work, they had a monthly sales meeting where they get a birthday cake to acknowledge the birthdays of all employees that month. It is actually a good system. My birthday and one other person's were celebrated. Then people started asking me how old I was. Most of them are all older than me and I have worked with them for a few years now so I don't really have a problem with this. But apparently they have a problem, because I am between 5 and 10 years older than they thought. So then I looked at my Real Age test results which says I am 3.7 years younger than my actual age. I combined the two and now I am 37 if you need to know.  Next year I will be 37 again.

I am 37 with the medical records of an octogenarian.

We all need another math class

We need a math class that explains the importance of statistics - the fact that there is more to statistics than just the number. We always need to look at both sides of the equation.

"What are the harms of this screening test? What are the potential benefits? If the patient gets an answer of increased five-year survival, that's an indication that their doctor doesn't know what they are talking about," Brawley said.

Cancer screenings are lauded as being the most important thing we can do to increase survival rates. Yes they help us find cancers earlier, before they become symptomatic. This is important and we should not skip screenings.

But, and there is always a big fat but(t), the survival rates are not the important numbers. The death rates are more important:

"Doctors were three times more likely to recommend a test that increased the (irrelevant) five-year survival rates from 68 percent to 99 percent than to recommend a test that slashed the much more important death rate from 2 in 1,000 people to 1.6 in 1,000."

Yes this is a tad bit confusing and I had to read the same article three times to figure out what they meant, and I took statistics (but I do have chemo brain so maybe it has countered my education).

"The reason is that screening automatically increases survival rates, because finding a tumor early means people live longer with their cancer diagnosis than if they had waited until they had symptoms to see a doctor -- regardless of whether or not anything is done to treat them. 

In some cases, such as slow-growing prostate cancers, the tumor might never have bothered them in the first place. That means screening, and the further tests and treatments that might follow, would have led to costs and potential side effects without any benefit to the patient -- a phenomenon called overdiagnosis.

"For helping people understand if screening works, survival rates are misleading," said Dr. Steven Woloshin, of Dartmouth Medical School in Hanover, New Hampshire, who worked on the new survey.

He told Reuters Health that death rates gleaned from clinical trials are the only reliable way to judge if a screening test is effective. But organizations that promote screening, such as the breast cancer charity Susan G. Komen for the Cure, tend to prefer survival rates, which sound more impressive."

So we don't want the survival rates, we need to understand the bigger picture - would this cancer ever have been a problem for me? Or would it have taken 30 years to get to be problematic and that is well beyond my life expectancy? Cancer rates increase as people age, so I can see this being important for an older adult. Would it have been a problem for them ever? And the potential side effects from cancer treatment, can cause other cancers and lifelong medical problems.

For now I'll keep with my screenings but will also remember to take the findings with a large grain of salt.

Fighting this aging business

I am attempting to fight this aging business. Sometimes I feel like I am winning - I actually have muscles right now from six months of going to the gym, I don't color my hair and have very few gray ones so far (and am happy to gloat about this fact), my wrinkles are minimal, and I don't think I look my age yet.

But then if you look at my medical file, you would think I was twice my age (which is a number that is none of your business). Before digital medical records came into play I had one of those thick files which could be used as a door stop. Now my doctors have to look through MANY appointment notes to find out what is going on. Sometimes I think they get lost in my medical file the way I sometimes get lost in Google.

I was reading an article about heart attacks waiting to happen and can say with some level of certainty that will not be me. But then I didn't expect cancer either.

Getting old isn't for sissies. Well I'm not a sissy by any stretch of the imagination (unless there are crawly things in the bathtub or bears outside the tent while camping or the doctor says 'you might feel a pinch') and I don't plan on wimping out either.

I'm not sure I am aging gracefully but I plan on having fun while doing so. What's life if you aren't having fun? This aging business just interferes from time to time.

Doctors get old too

About 15 years ago I had some digestive issues which sent me to a gastroenterologist who at the time I remember as thinking was getting up there in age. Then I went to see him again for new issues a few years ago and he was decidedly on in years. He didn't remember seeing me before but due to the intervening years, I wasn't surprised. He sent me off for some tests and saw me again and then more tests and saw me again. Finally when our conversation went like this, I decided it was time to switch to a younger model.

Me: Well what about my hiatal hernia?
Him: Who told you you had a hiatal hernia?
Me: You did.
Him: (Rereading the notes he had just written) Don't worry about it.

Well, the long and the short of it was that he needed replacement. I looked up his credentials on the hospital website and figured out with his dates of medical school graduation he was the same age as my father, or older. My father is now 82. You do the math. He has since retired. At one visit, I mentioned something to the person checking me in and she said they were all amazed he was still working but was only part time.

As doctors age, there are no checks in place to ensure they are still competent. I think there should be something like retaking drivers tests for elderly drivers. As we worry about doctors retiring and not enough primary care physicians, we also need to think about making sure all doctors retain their competency. I am sure there are some requirements to meet their state's medical board standards and keeping skills sharp but a long term, slow progression of losing the sharpness of youth, can be difficult to diagnose and report.

I am not a big fan of the young doctors who are still wet behind the ears. I think I prefer my doctors to have between 5 and 30 years of practice. Too young and I feel like their mothers. Too old and I feel like they are treating me as their child. I would rather be their peer.

On brains and being brainless

I was elated to read this article this morning. Well maybe not elated but relieved, happy, or something along those lines. Basically I can say that in addition to chemo brain my middle aged (am I really middle aged?) brain which can't remember taking pills but can remember the big picture of things. So more reasons that my short term brain is gone and I can go about my life happily in my space shot way.

Going back to that term middle aged, I remember as a child reading a book that referred to a 40 year old as middle aged. I thought 'wow that is really old'. From the other side of 40, I can say 40 is not old, 40 is young, 40 is a pip squeak, 40 still needs to grow up. In reality I am still 29, but 40 is not old. What are they saying now that 40 is the new 30? Well, if I'm 29, I'm still waiting to hit the old 30.

But I digress, its Monday morning and for once I have a five day work week. This means that this morning I am meeting a friend for coffee and then going for a walk and working from home. I think I even have a week without doctor appointments. I have to double check but I think that is the case.

Its going to be a wonderful day so perhaps I'll even go out and attack my weed problem. I did get out yesterday and pulled out the lily of the valley which were suffocating my poor strawberry plants and found that I have lots of almost ripe strawberries - now I have to see if I can beat the bunnies to the strawberries. There is a line of chewed strawberries on the little stone wall. Grrr... Maybe I'll let the cat out to take care of the problem. Anyway weeding makes my back hurt, Rats.