Wednesday, January 28, 2015

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.

Tuesday, January 27, 2015

Emotional Support when Facing A Cancer or Other Nasty Diagnosis


Repeat after me:

"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"

And again.

You could have a rare disease, such as being one of only 8 people world wide with the same diagnosis. But I bet there are other people with a similar disease from a non-medical type of view. You are not the only person with a cancer or a genetic disease or whatever you have. Unfortunately there are other people out there who are dealing with their medical diagnosis.

At my second cancer diagnosis, I didn't sit back. I took action. Within 24 hours of my diagnosis, I started my blog to keep people posted on my health. Before my first surgery, I joined a support group. Somewhere in there I started tweeting and joining several online communities for additional support. At the end of active treatment, when many people fall apart because your medical team says 'see you in six months', I found a therapist. I was determined not to let cancer suck away years of my life again.

I cannot say enough about the benefits of support groups. When I joined, I was told that it was proven about the benefits of them. People who actively seek out emotional support do better with their treatment. They have been shown to  handle treatment better and have improved outcomes. Check out all these articles referenced here to show studies demonstrating this.

If you are emotionally miserable with your medical issues, find support. These days it can be available in online communities but also in person. I recommend you make the effort to get to an in person group at least  periodically and make new friends with those who are there. You will feel better.

I have numerous cancer friends. These are friends who I would not have met if I didn't have cancer. We help each other with the bumps in the road. You can do this too.

Yes every cancer diagnosis is different even if you basically have the same disease. But the medical roller coaster is pretty much the same for all.

Monday, January 26, 2015

Thoughts on tanning

In yesterday's post, I mentioned that I will work on getting a tan while on vacation. I went back and reread yesterday's before writing today's and that kind of leaped out at me.

Tanning is not considered a healthy activity. It might cause wrinkles and skin cancer decades later. I have never fake baked, use spray on tans or been to a tanning salon. But I like a little color on my pale, look like I live under a rock, natural skin pallor. I also burn quite easily.

The best tan I have ever had in my life was when I spent a week in the Bahamas, snorkeling, water skiing, and moving around constantly. I wore sunscreen every day and never sat in the sun and didn't burn at all. But I was an awesome light tan color by the time I left. I have never had such a good even tan in my life.

So now, I do not expect myself to be able to move around as constantly, I will wear sun screen and move around as much as I can so I can tan lightly. But I am more in wrinkle avoidance than skin cancer avoidance mode.

Cancer makes you ask 'how long will I live' and 'how important are those long term goals'. Retirement savings, and other goals, become less significant after a cancer diagnosis, but then as you feel better, time passes since diagnosis, and the medical bills subside, they then return to prominence in your life. Priorities change as we age and cope with the medical disasters thrown our way.

My one chemo summer regret is that I didn't work on my tan more to prevent that lovely 'chemo pallor'. If you are a stage IV cancer person, I encourage you to get a 'healthy' tan.

Sunday, January 25, 2015

Planning and travels

As my health deteriorates and we age, our planning for travel has changed. In the past, we would look for many adventures to do on our travels. The more remote the better because we could always tramp off in the woods for hours at the time.

I am trying to plan vacations for this year for us. Our first trip will take us to an island in Florida for our anniversary. This was chose because it is on the ocean and I can always find a lounge chair to spend hours gazing at the blue sea if I am not  up to much more. My husband can go bike riding while I work on my tan. Also it is walking distance to the beach so I can always head back for a nap on a comfy bed if necessary (if it doesn't involve loose sand).

Our next trip is a family vacation. We will have a bedroom which requires as few stairs as my octogenarian parents. And I can always admire the view from the top floor living room with a wrap around deck if I am not up to going off on excursions with the rest of the family.

Then we are planning a trip for just the two of us in September. Our requirements are not many:
  • wifi
  • queen or king size bed
  • waterfront with lounge chairs to view it from
We haven't figured out what state or country we are going to, never mind what else we are going to do. But we need the creature comforts. So that I can take it easy and get all my rest in. Actually so I can recover after adventures and not waste a whole day of vacation sitting around because I did too much the day before.

My goal is not to compromise on having fun but just learn to live with less fun than previously.

Saturday, January 24, 2015

Learning to live like a healhty person

Here is a goal for me for the year: Learn to live like a healthy person. It doesn't sound that complicated but it is.

Here's a brief recap of me in case you forgot any ailments:
  • 2 cancers
  • 8 surgeries for cancer and hysterectomy, bad knee, gall bladder
  • Rheumatoid arthritis, fibromyalgia, degenerating disks in my back, left arm lymphedema 
  • Depression and anxiety (I feel I am entitled based on the other bullets)
 I feel like I might be missing something but that gives you the basic idea of with what I have to cope (is that grammatically correct?). I can't remember because of chemobrain/fibro fog. See I knew I missed something!

So to think like a healthy person:
  1. I can't let myself think that any ache and pain is a new cancer.
  2. Nor can I let myself attribute any new ache or pain is an existing ailment or a side effect of a medication.
I need to put all of this aside and relearn to think like a healthy person.
  • An cold needs to follow the three day rule - if it doesn't improve in three days, call the doctor.
  • An ache or pain needs to do follow the five day rule - if it doesn't improve in five days, call the doctor.
  • Dripping blood still needs to go to the ER... well maybe, it depends on how much blood.
If I can stop hyper-focusing on my health and learn to think 'if I was a healthy person, what would I do' every time, I think I can get more balance back into my life. A nice goal in life.

Friday, January 23, 2015

My insides and retraining my brain

Do you ever give much thought to your insides? I mean your gut basically. My insides have been feeling out of whack for the past few weeks. I have been blaming my new rheumatoid medication which can have the lovely side effect of nausea.

Last night, we went to a comedy show in Boston, something we never do. I did research and found an affordable parking garage near the venue so we could just zip in and zip out. It was easy and convenient and one of the most vertical parking garages I have ever seen. It had 11 levels. Each level was probably 15 spaces long and 8 spaces wide with skinny little driving lanes - typical Boston.

When we left the concert, I was trying to get my phone turned on so I could figure out our way out of the maze of downtown Boston full of one way streets. My husband drove down the 6 tight floors of four turns each down to ground level. I felt nauseous after two minutes of that. My insides felt all shaken up.

We drove home and went to bed. My insides do not feel that great today either. Obviously it must be the car ride.

But with many ailments under my belt, so to speak, I am quick to blame medication so my brain doesn't have a chance to jump to any other medical roller coasters. I can live with that.

After cancer, our brains start to take every chance they can to head for the highway to hell. We need to outsmart them and divert them to some thing much less scary. I keep focusing on retraining my brain so I keep my sanity.

Thursday, January 22, 2015

I'm still reading the news

I'm not glued to the health news in the search for the cure for cancer, and my other ailments, anymore. I had to take that step for my own sanity. But I still read the news.

For some reason, I am very intrigued by the surge in measles cases in California where unvaccinated students are being told to stay home. I just don't understand why some parents never got their children vaccinated. Why, why, why? The UK doctor who said that vaccines contributed to autism or whatever has since been debunked.

One of the parents of a child who is forced out of school for 21 days said that if any students do get measles during the forced home stay, her daughter will be forced to stay home for another 21 days. So the suspension could go on and on. And her daughter can't get a vaccine for another 30 days because she was exposed to the disease. So this could go on for months.

I never understood this whole anti-vaccination stuff anyway. I know there are people who do not believe in vaccinations or flu shots. But if you don't get a shot you can't expect that there won't be a price to pay. You could get the flu or measles or whatever, you might have to miss work or school, and people might want to avoid you.

To me this is the same as for anyone who doesn't follow traditional cancer or other treatment and expect their insurance company to continue to cover all tests and treatments.

If you don't go with the flow, you may find yourself left behind.

Wednesday, January 21, 2015

Uncertainty

I have been watching the ABC Family show 'Chasing Life' since last summer. I don't really understand how they planned the season because it started maybe in June and ran for most of the summer and since then they had an episode in December and one in January. Finally, season one is over, I think. I did a search and learned that it had been renewed for a second season. Maybe that's why they held off on the last episodes of season one until they knew if they would have a second season or not.

Anyway, I watched the last episode night where I learned (spoiler alert) that April, the main character, is in remission with a 60% chance of the disease returning. See, with cancer there are no guarantees. It made me think.

If you have cancer, you analyze the statistics on recurrence and death until you are blue in the face. Then you discuss and dissect them with anyone you can. You tell yourself you are in the 'good' part of the percentages as in 'with a 70% fatality rate in the first five years'. You are clearly part of the 30% because you couldn't possibly be part of the 70%.

The only thing with cancer is that you know there are no guarantees. You can tell yourself anything you want but deep down you know the only thing that is certain is the 'uncertainty' of a cancer diagnosis.

Tuesday, January 20, 2015

Stage 0 thoughts

I like to think of a stage 0 cancer as a dodged bullet. My husband is a stage 0 cancer person. He had a malignant polyp removed from his colon a few years back.

Yesterday, he had a colonoscopy (which went just fine, thanks for asking) and the nurse in charge of his prep, walked up to him and said 'you had colon cancer?' I almost replied no for him but kept my mouth zipped as he was the patient.. He said yes as he had his evil polyp.

I was kind of jolted by the question about him having cancer. It was a bit of a surprise. But yes I do agree it was cancer. I think any kind of cancer sucks. But stage 0 cancer treatment is usually just a small surgery of some sort to remove the diseased area.

There is some discussion on DCIS if it is over treated - does it really require surgery? Is it over treated? According to the latest figures from the ACS, they expect 60,000 out of 240,000 cases of breast cancer diagnosed in 2015 will be stage 0 or DCIS. That's 25% of all cases. So if screening keeps us from finding cancers before they have progressed, more power to them.

My thought is if its a cancer, take it out to preventing from it eventually causing the death of the patient.And maybe I am just hyper focused on all my ailments and don't think about his as much.

Monday, January 19, 2015

Other people's health

Sometimes my health does not take center stage in our house. Today is one of them. My husband is having a colonoscopy. He had a 'bad' one a few years back and now is on every three years. He spent a lovely afternoon and evening making little trips to the bathroom. But now he is sleeping and we will leave in an hour. I will bring a peanut butter sandwich he can snack on the way home.

Later today I will also call the vet. The cat has been looking a  little skinnier than usual recently. He did celebrate his 20th birthday (with extra treats) back in November. This is the equivalent of dealing with a 110 year old so we know he will not be around forever. However recently he has been exhibiting some fairly dire symptoms.

We are hoping for the best but not very optimistic. He was my chemo buddy. My husband got him shortly before we first met in 2001. He is an important member of the family.

Today I will be the caregiver for them both.

Sunday, January 18, 2015

Ignore all the headlines

I think I spend too much time reading the headlines, especially in the category of health news. If I believed them:
  • I will get the flu because it is rampant across the country
  • The cure for many things can be found in some obscure arctic bacteria
  • Booze is so bad for you, you could poison yourself easily.
  • Pain killers are now the street drug of choice.
  • Our phones are suffocating us.
  • Cancer is due to back luck.
  • The cure for some obscure form of cancer will be found shortly.
I am so done with all that. I am going to be healthier this year and am promising myself, I will stop  bouncing through the news headlines. We know Dr. Google doesn't know anything. So we should also assume that Dr Internet knows nothing.

Emotionally, grabbing at headlines can be very stressful. The yo-yo effect of the constant ups and downs are significant. Its sort of like scanxiety at a lesser level. I need to take more control of more levels of my life, as I have blogged about before, and this is just another one.

With bad medical diagnoses, we tend to grab at straws looking for the magic cure. Then we develop the bad habit of following anything we can find - usually ending at disappointment - and keep repeating the process because it offered us a small glimmer of hope however fleeting.

So I am going to stop reading the over-hyped headlines that offer false hope and start looking for real information. I can't live on false hopes and the ensuing roller coaster.

Saturday, January 17, 2015

I love this time of year

There is so much optimism in the health news this time of year (not so much the rest of the news especially with the ongoing European terrorism).  What I am referring to is the deluge of advice on flatten belly fat, eat healthier, and, my favorite,  how to really lose weight.

As with everything on the internet, we must take these with a grain of salt (and possibly a large margarita as well). Eating healthier does include eating more vegetables but I do that. I mean how many vegetables do I need in a day? And will it make all my ailments go away? They are what contribute to my unhealthy body. Because of my ailments, I spend too much time sitting on my butt and too little time hiking, skiing, snow shoeing, walking, etc.

I need real advice on how to be healthier and this is what I have come up with for me this January.
  1. Attempt to go for a walk at least once a week. If I can do that, I can increase my weekly exercise quota. But its not really a reality. Some weeks I just cannot add in a walk because I feel crappy so much of the time.
  2. Stop eating the crap at work. 
I work in a small office 15-18 hours/3 days a week. It is family run and wonderful. But I have never worked in an office with so much junk food, even when I worked for a candy company (Fanny Farmer Candy Shops) and was responsible for all the samples for photo shoots. Even the owners joke about the office 10 lb weight increase.

This week for example, the office manager had a sugar craving and went to the bakery next door and came back with an entire blueberry coffee cake (and a giant cookie for herself). Plus the (giant warehouse store containers of) brownies and cream puffs someone else brought in .

I think if I can attain those two goals, I will be a thinner happier person. I did breakdown yesterday and had a piece of coffee cake, left over Chex mix, and some goldfish. But in avoiding the crap for a couple weeks, the scale had started to move in the right direction.

So I am going to skip the healthy news this year, unless a cure for cancer, fibromyalgia, and rheumatoid arthritis are announced, and stop eating the junk food at work.

Friday, January 16, 2015

Ailment analysis - pre and post cancer

Okay,y I admit I have been feeling pretty crappy off and on for the past few weeks. I don't know what it is. If I thought it was diagnosable, I might actually call my doctor. But as it is just a blahness feeling with nothing really specific, I am not doing anything.

But it does allow me to think about the comparison between a healthy-ish person, a cancer-ish person, and an achy-painy-ish person (with RA and fibromyalgia) and what are the differences in my reactions.

SymptomHealthy-ishCancer-ishAchy-Painy-ish
Sneezing/Sniffling/CoughingWait and see if it goes away and check out the cold medicine aisle.Wait and see if it goes away.It better not turn into pneumonia.
OwiesWait and see if it goes away, then call doctor, maybe, eventually.Is there a lump? Maybe its a tumor!!Is there a lump? Probably just an RA nodule. Ignore it.
Lumps and BumpsIgnore itIs it where  a tumor might possibly be?Definitely just an RA nodule. Ignore it.
HeadacheTake an aspirinIs it a brain tumor? MRI stat.Just another achy-pain.
BlahnessTake some vitamins and nap more.Is my blood work okay? If so, ignore it.Blood work checked last week and again next week, I can't be that sick.
DizzinessMust be dehydrated, drink more water.Is it a brain tumor?
MRI stat!
Just part of my new lifestyle.
Dripping bloodBand aid, butterfly or ER?Band aid or butterfly?Band aid or butterfly?
It takes me a lot to call the doctor these days. The more ailments I have the less likely I am to call the doctor.

I have been feeling blah but right now I am getting my blood work checked every two weeks because I added a new prescription for my RA and I see my rheumatologist in two weeks. I also know if I really want to, I can get into my primary care's office on the same day.

I don't wake up each day expecting to feel well. It can be a rare occurrence that I feel great. So these days, I'll just ignore most things.

Thursday, January 15, 2015

Expanding my life

I have a job now where I work 15-18 hours/week. I have actually had it for what is closing in on six years. I really like my job except for one issue. The commute. 20+ miles on infamous Boston are highways with a solid selection of school buses on both ends. I have told my boss the only thing I don't really like about it is the commute so he could feel free to pick up and move the company ten miles south and I would be happier.

I used to work a second job where I worked closer to 30-35 hours/week total. After RA and fibromyalgia combined with evenings and weekends required for the second job, I had to leave it. I sometimes wonder if I found a job which was closer and flexible could I work more hours.

So periodically I take a look at local job openings. I actually applied and interviewed for one last fall which was one mile from home, walking distance for me on a good day. Then they decided they wanted someone full time instead of part time so that was that.

Yesterday I saw a job posting at a non-profit who's cause is close to my heart but its 20-30 hours/week and requires one day a week in the office downtown. I am not sure I am ready or able to commit to a new job which requires one day a week in the city and many more hours than I currently am working.

Then this morning I am more intrigued. I found another job that is 10 hours/week and looks that it is pretty remote. What if I could add a second job which is ten hours/week and has flexibility and does not require regular office time? Could I do it? Could I expand my life and my paycheck to take on another job? Sometimes I feel I spend too much time at home watching bad TV.

This requires more thought. And hope that my health will cooperate as well.

Wednesday, January 14, 2015

Did I say it was a bad week?

Last week I had an exceptionally bad week in several different ways. It was just your basic cluster of everything coming together to remind me of how life with my health can take its twists and turns. Here is a brief outline:
  • Monday at work, where I am also the IT person, we had a complete hard drive failure on our data computer to the point that we had to get new hardware and start over from scratch. It just meant a longer and stressful day for me.
  • Tuesday at work, I had to deal with the outside hardware people to fix the computer. And the alarm guy was there bleeding the sprinkler system or something that entailed of spraying water outside the building on a 15 degree day (I had to move my car) away from the spray. Later it snowed on top of the spray that turned to ice and I fell on my knee because I couldn't see the ice under the snow which jolted my body and made my knee and my back hurt for days.
  • Wednesday my back and knee were very sore from my fall and cancelled my hair appointment and skipped the gym because I felt that bad but I made it through my full 6 hour work day.
  • Thursday I felt okay and went to the gym. Then about 2pm I couldn't keep my eyes open and took a nap. I woke up and felt horrible couldn't talk, cancelled all my appointments except my pain doctor for Friday.
  • Friday I felt a little better but stayed home except for my one appointment where I had a series of trigger point injections on my back (they still needles into the sore spots). 

So in one week I fell, had a 24 hour cold, exceptional work stress, lots of aches and pains, and had to spend a day off my feet because of my health. Did I say it was a bad week?

Its sort of a normal week for me. My health takes a dominant role in what I do. But I try.

This week is slightly better but I didn't sleep well last night so I couldn't wake up this morning. The cat insisted on sitting on my shoulder with his paws digging into my sore spots and woke me up at 230. I think I got back to sleep around 4 but had some very weird dreams.... I have to go into a conference in town this morning on the subway. I almost bailed but I really want to go to it. I may need a nap after but I hope to go to the gym.

Nothing like being 'healthy' to make me sit on my butt and watch bad TV to recover from normal life.

PS I do not count my fall on the snow covered ice as related to my ailments. It could have happened to anyone.

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