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.

Post Breast Cancer, Happiness Is A Clear Mammogram

I had my mammogram last week. I don't talk about these ahead of time because I don't feel the need to. If I feel the need to, you can bet my blog will be covered in mammogram information.

But even if I don't talk about it, doesn't mean I am not thinking about it. You can bet I was thinking about it. I was convinced that I had a recurrence and I timed my mammogram (for two days before my annual oncologist appointment). I was sure I had a something.

I had already started putting together a plan in my head on how I was going to handle it, tell people, deal with treatment, talk to my oncologist on Friday about it. I was positive.

I can convince myself I am going to die next week if I really try. Anyone who has gone through a cancer diagnosis can easily convince themselves its back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am so happy that it was clean, nothing exciting to talk about. I talked with my oncologist about it just to be sure. But in the meantime, I am happy.

Today its all about me

I have made a decision (don't laugh - I am capable of deciding things by myself). Today its all about me. I am going to the beach. Its supposed to be hot, near 90 so it will be a perfect beach day. My tan is starting to fade. Actually, I barely tan at all. If I got any color earlier this year, it has faded. A friend once said to me that by the end of the summer, I might look like a french fry.

By averaging a doctor appointment a week, I have no time to get a sunburn and have it fade before I get to a doctor. I would get a lecture if I showed up at an appointment with a sunburn.

But anyway, today its going to be hot so it will be a perfect beach day. I will go the gym first so I can be virtuous. Then I will plant my chair in the sand and sit with my feet in the ocean. After I will go out for clams because that's what we do in New England after the beach - eat seafood, fried seafood that is.

I haven't been to the beach for over a month. Either I haven't had time, or the weather hasn't cooperated, or something else.

I need some time for me. Yesterday I spent all day with friends - one came over for coffee and I met two for lunch and then they came back over here. I had fun but I got really tired. That means when I go to the beach I will just sit. But I will be happy. And that's important.

I blew out my flip flop

Yes it really happened. We went to Sanibel Island for a week which is why I haven't been blogging about me much. And the first day we got there we went down to the beach in our flip flops and stood in the surf and I really did blow out my flip flop.

It was a wonderful relaxing time. And our tenth anniversary. Since we got married, my health has tanked. Let's review the last ten years of my health:

2005 - Massive internal infection due to necrosing fibroids which led to hospitalization and a few months later a hysterectomy.
2006 - I was fairly healthy, for a year.
2007 - Breast cancer diagnosis in May followed by two surgeries, chemo, and ending the year just before Christmas with another lumpectomy.
2008 - Radiation and gall bladder surgery. And my back started causing a lot of pain.
2009 - Back MRI and diagnosis of degenerating disks
2010 - Lymphedema started and treatment for my back. A badly sprained ankle with a chipped tibia and other longer term issues.
2011 - Back treatments and injections began. And I got tennis elbow and developed Raynaud's.
2012 - PT for my tennis elbow and more back injections and procedures. And diagnosis of RA and fibromylagia.
2013 - Osteoarthritis in both knees with synvisc injections. All sorts of fun with RA issues.
2014 - More RA issues, a few colds caused by low immune system. Dry eye issues from RA
2015 - So far only two colds including an ear infection, more lymphedema, and some evil dental work.

But we are still happily married and we are still speaking to each other.. My husband does put up with me and all my ailments.

How to be a happy cancer person

I found this list of things happy cancer people do not give a rat's a$$ about. I completely agree. 

1. They don't care for letting drama into their life.
   I don't need your drama. I have enough of my own.
2. They don't care for sweating the small stuff.
   Small stuff doesn't count when you are coping with cancer. 
3. They don't care for statistics.
   They are just numbers. I am a person, not a number.
4. They don't care for passing up opportunities.
   I am happy to leap for the opportunity to travel, try something new
5. They don't care for other people's expectations.
   Why should what you think matter? I don't really care.
6. They don't care for high maintenance relationships. 
   See drama above.
7. They don't care for jeopardizing their health with bad habits.
   I think after cancer we all take a look at our habits and do our best to improve them so we can help keep cancer away.
8. They don't care for rejecting help from loved ones.
   If there is one thing we learn is to accept help from others when offered. Coping with cancer can offer a dose of humility. When chemo makes you too sick to keep food in your stomach, some one else helping you cope with life is a major help.
9. They don't care for worrying about the future.
   My one big hope is to have a future.
10. They don't care for living in denial.
    Learning to cope with a cancer diagnosis takes you through the five step journey to get to acceptance. Denial is a step to get through and not live in.
11. They don't care for keeping up with the Joneses.
    I'm paying medical bills so I really do not care if you bought a new car or a fancy purse. If its a new pair of shoes, that might be another story.
12. They don't care for buckling under the fear of the unknown.
    What is unknown is will my cancer come back. I can't fear it or succumb to it. Its like terrorism, you can't let fear of it control your life.
13. They don't care for other people's "sob stories."
    Again see drama above.
14. They don't care for focusing on the negative.
    Ibidem or see drama above.
15. They don't care for not living life to the fullest.
    Enjoy what you have and enjoy yourself as you do so.

Could all of this lead to that elusive new normal? I don't know. But I know it describes me fairly well.

My time span

These days, every day I have an expiration time. This means at no point past that point in time should I attempt to do anything more than knit, read, or watch TV. This time frame means that every day I need to plan out  my day and not spend more time than I should at any point. Every week I sit down and plan out my little time periods so I can get through my days and what I need to get done..

Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.

Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.

Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.

Since my diagnosis  just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.

Happiness

What is happiness in life? We don't realy know. Scientists have defined it as:

My version of it is a bit different (and I have long since forgotten all the calculus, trigonometry and higher math I learned in college) and shorter.

I think happiness is defined as contentment, meeting your own expectations and no one else's. In the scientific definition they talk about it as meeting your expectations of yourself. But do not lower your expectations. You need to set your expectations to a level that you can attain. Wow, am I getting philosophical this morning? That is too much to ask.

But I digress. What makes me happy? Well, as you may have guessed my health doesn't make me happy. Happiness for me is getting a feeling of accomplishment in what I do. Sometimes it leads me to stretch myself a bit thin with volunteer work but I like how I feel after I get something done that helps another group of people.

Sometimes I see people who clearly are not happy with their lives. Some times circumstances can be beyond our control - like getting cancer, and sometimes we need help from others - money, therapy, but we are better off if we focus on making lemonade out of our lemons than allow resentment to grow and turn us into crabby nasty people.

What are my expectations in my life? I now know I am not going to be a rocket scientist, a CEO, a Hollywood star, or cure the common cold. But I am  okay with all that. I wouldn't mind finding a cure for cancer but think there are others who are much more qualified.

What do I want out of life? I think I am happy with a little house on a little street where I can live quietly with my husband and garden. I think I am happy in our own little world here. Its only 10 minutes to the damn hospital if I need it.

Cancer and long term planning

With a cancer diagnosis, one starts having many little conversations with oneself and reevaluates many things that had previously been taken for granted in life. Some of those are very profound,  'its time to take charge of my life', for example, and others are less so 'its time to go to Europe that I've always talked about'.

But one of those items in life that seems to get reevaluated is 'if I have cancer, how important is retirement saving and planning?'. 'How am I supposed to save for retirement and pay medical bills?' And you cut back on your working hours so you can get to appointments. Money is tight.

But the real question is 'with cancer, will I even be here for retirement?'. Clearly retirement planning takes a hit. The younger you are, the less real it can seem.

Yesterday my husband came home from work (where its all top secret so he can't tell me much) in a cranky mood because he felt it was another long and boring day. (My point to him is they pay you to be there. But I digress) Anyway, one of  us mentioned how many more years of this would there be to put up with as we are getting up there in age.

The thought then occurred to me, we never figured out what the hell we are doing when we retire. To be fair, we got married nine years ago and two years later I was diagnosed with breast cancer and all thoughts of retiring were put aside. So now we have no plan. This isn't to say we aren't saving for retirement, we are. But we never figured out our plan.

What are our goals before we retire? Pay off the house first. Then what? Where do we want to retire? Close to good medical care for me of course. But do we want to keep the house, buy a second retirement place someplace? What do we want to do when we retire? We need hobbies and plans. Sitting around together will quickly lead to a body or a divorce.

We realize we need to start planning and thinking and agreeing on some things. It shouldn't be hard but we need to start.

Maybe now I am in a mental place where retirement seems realer again. I am getting closer to the age. My health certainly isn't going to let me keep working for another 20 years. Another cancer blip might change everything all over again but while we can, I think we need to do some long term planning for ourselves and look forward to some happy, healthy years together.

Little bits of happiness in the medical worlds

The medical world does not need to be sterile and boring. Most waiting rooms have big screen tvs now. Chairs are comfier. They are trying to relax the patients a bit more.

I have been taking a family member for treatment to an area at the hospital where I haven't spent much time in a few years. I have noticed they are expanding the creature comforts for the patients and their family members. There is art. There is a lending library. There is saved seating. There is free coffee. Just nice little touches for long waits.

Then I saw this online:

A bunch of young men were seen running around a parking garage roof which is visible from the ICU rooms and oncology rooms of a Chicago hospital. I got a kick out of it. Apparently patients and providers a like did as well for its short life.

Engineering students made thousands of paper cranes for a hospital in Florida... The images are lovely and can be seen here.

While spending too much quality time at a medical facility, its nice for a little peek at something soothing or amusing.

Stress

I have a favorite coffee mug these days. It says "I didn't survive cancer to die of stress".

It is true. I try to avoid stress at all costs these days. Ten years ago I was working downtown with a relatively high pressure job where my boss believed yelling at people and making people cry would motivate them.  I didn't like that, nor did I like the way my commute aligned with my  new husband's - he was home an hour and a half before me. I found a new less stressful job which was shortly followed by a  highly stressful cancer diagnosis.

Since then my health has been less than ideal and I have to live with the constant stress of new medical twists and turns every week (this week is an MRI and potential knee surgery). Stress started having a way of taking over my life as I focused on each stressor.

I learned to develop some support systems through support groups, online communities, writing (my blog), therapy, exercise and more. I try to do what relaxes me. I think while I am certainly not healthier, I am happier and less stressed.

Now doctors are catching on and prescribing stress management to patients and developing stress management practices. New research shows that 60-80% of ailments are caused by or exacerbated by stress. That is a scary number. I don't feel that my health issues were caused by stress but I do know if I am having an overwhelming day of stress, my aches and pains increase.

Medical centers are looking at offering everything from counseling, nutrition, meditation, yoga, tai chi, and more to help patients get their lives in balance. Everyone could try this by themselves, give yourself a five minute time out when stress starts taking over to close your eyes and relax and clear your mind. Or take a ten minute walk. Or join a gym, start a new exercise plan. Something besides sitting there and stressing.

Fear of cancer

A by product of raising cancer awareness can be increasing people's fear of getting the disease. I think that often in the back of people's minds as they donate or pinkify in someways is "I really hope I don't get it". With Angelina Jolie's decision to have a prophylactic bilateral mastectomy because of the BRCA gene and the ensuing publicity, more and more women are concerned about their risk of getting breast cancer.

While breast cancer eventually impacts one in eight women by the age of 80, it is much less common in younger women. Most cancers are also discovered at the early treatable stages.

The BRCA gene, which Ms. Jolie has, is only responsible for about 5-10% of breast cancers. If you have relatives who died of ovarian or breast cancer at a young age, you probably should speak to your doctor about being tested for its presence.

If you do have the gene or have a strong family history of breast cancer there are still options available to you instead of a bilateral mastectomy. You can take Tamoxifen. You can skip surgery and medicine and opt for an aggressive screening schedule - particularly if you have not yet had children and plan to do so.

You can still get breast cancer even if you don't have any risk factors (I didn't) at a young age (mid-40s) - anything under 50 is considered young for breast cancer. You can eat right, get exercise, blah, blah, blah.

There is no reason to fear breast cancer or any other cancer or medical ailment. If you spend your life in fear of getting sick, you are not living, you are hiding.

My body is in such bad shape right now. My doctors are amazed at the amount of osteoarthritis I have in my knees and I tell them I worked hard for many years to get into this shape - snap, crackle, and pop every time I bend my left knee from years of skating, skiing, roller blading, hiking, and much  more. I had fun for a long time. Now I still have fun and don't hide from what might happen but I just move at a slower pace.

On Being Happy

We should all try to be happy and enjoy life. Who wants to hang out with a bunch of curmudgeons anyway? We do not even need the internet to tell us when life gives us lemons we should make lemonade (and add vodka as needed). But I do think we should forget about things like the doomsday clock, cliffs, death, and cancer among other things.

So I looked on the internet for sources of information on this (because everything on the internet is true) and found that there are 15 things to give up in order to be happy:

1. Give up your need to be always right.
2. Give up your need to be in control.
3. Give up on blame
4. Give up on self-defeating self-talk.
5. Give up your limiting beliefs
6. Give up complaining
7. Give up the luxury of criticism
8. Give up your need to impress others
9. Give up your resistance to change
10. Give up on labels
11. Give up on your fears
12. Give up your excuses
13. Give up the past
14. Give up attachment
15. Give up living your life to other people's expectations.

I could write an essay on each of these. You can read more on these here but I think it comes down to defining yourself, being yourself, put your self as number one, don't worry about what others are doing or might think, and relax and be happy.

Life throws us curve balls and if we can be happy before a curve ball nits, we can cope with it better if we are happy than if we aren't when it hits. We need to focus on what makes us happy as well.

Happiness is underrated. And incredibly important.