Cautiously Optimistic

I have a bit of optimism today. Nearly two years ago I stopped working because it was too tiring for me. I fell asleep at my desk a couple of times and would frequently struggle to stay alert on the way home after a long four hour work day.

Pain isn't my enemy. Pain can be controlled. Fatigue can not be controlled. Its not that I need to nap every day. But I need to rest every day. I can't stand for any length of time or my back hurts. I need my rest. Call me a wimp but that's what it is.

I applied for Social Security Disability in the spring of 2016. I have been denied twice so I had a hearing in front of a judge yesterday. My attorney made some good points with the judge.

I have cautious optimism that I will get a positive decision from the judge before the end of the year. Actually I can only be cautiously optimistic that I will be approved. I have no other choices....

Hope

The one thing we all have to keep at all times is hope. Yes, hope. We all must continue to believe there is a rosier life out there for us.

But for a cancer patient, we must keep our hopes alive. What do I hope for?

• A cure for cancer
• My cancers do not come back

Two hopes. Nothing fancy. Two little phrases. Very simple. I work on these two hopes differently.

First I read medical research but do not obsess about it. I read about on going research and upcoming developments. I read about doctors' opinions of the research as well. I know not all research is going to help me. Some of the research may not pan out. Some of it will pan out but wont be available to patients for another 10-15 years.

But all of it gives me hope. I can see progress in the works to make sure fewer people go through medical misadventures, heal better, have a better prognosis, and lead healthier lives, even with a cancer diagnosis.

Second I do everything I can to make sure my cancers do not come back or reappear elsewhere in my body. I try to take care of myself. I go to the (damn) doctor as often as I should. I take my prescriptions. I go for suggested tests and other fun misadventures. I get exercise. I eat right (mostly). I do my best.

By being proactive in my health, it allows me to feel comfortable that I am doing all I can to make sure my cancers do not reappear. Or if they do, they will be caught early.

Hope is optimism and I need to keep it close in my life.

Happy New Year!

So it was a late start for the year as its 330pm and I'm just blogging now. Its New Year's Day and I don't have much for new resolutions this year. I'll just repeat prior year's:

Younger
Thinner
Taller

Especially thinner. I have a new medication that is supposed to kill my appetite.No signs of that yet but I am always the optimist.

Celebrating more birthdays

The American Cancer Society has/had a campaign on celebrating more birthdays. Really its just another way of saying 'another year on the right side of the daisies'. I'm all for it.

There have been times in my life where I would think 'if I make it to X, I'll do Y'. I was going to have a party 20 years out from my first cancer diagnosis, then 25 years out. It still hasn't happened.

But it was thrown off course with a second cancer diagnosis 25.75 years after the first. Is that right? I'm doing math in my head early in the day so I'm not sure. But I think it is after counting on my fingers a few times.

That means I had 25 years of more birthdays in cancerland. Followed by 7 years of more birthdays in double cancerland. (We are not hoping for triple cancerland.)

What is the significance? I'm not sure. I am at a time in my life where I feel I hear about more and more friends who do not make it. Last weekend an old high school friend who I haven't seen in decades died in his sleep at age 52. And he had no apparent health issues. How sad.

But now I am celebrating more birthdays and enjoying it. If you must know I am 37 again. And I'm still here.

About them bones...

Cancer has a way of doing things to your bones. Never mind the evil metastases that can be rather nasty. But the cancer treatment can do a number on your bone. Some treatments cause bone loss. While our immune systems are compromised it is harder for the body to grow healthy bones. The result is osteoporosis which makes one more susceptible to broken bones.

After cancer, we learn to appreciate life a little more. So on this Thanksgiving Day, take a moment to say thanks for still being here after cancer and take that wish bone and wish for a healthier life without cancer.

Optimism in the face of cancer

When one is diagnosed with cancer, all sorts of things flash in our brains - rail thin bald people, iv poles, scars, doctors, hospitals, hospices. All sorts of things loom in our future - medical tests, things that pinch, chemotherapy, and ugly hospital gowns with a draft in the back.

One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.

They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.

What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.

As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really.  They measure time in weeks and months, taken in stages until the next round of tests to check for progression.

Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.

A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.

Carpe Diem vs. The Future

An oncologist advises his stage four patients to 'Carpe Diem' or 'Seize the Day'. This is good advice for anyone: don't just sit there, do something. Or get off your butt or any of a multitude of other definitions.

I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.

An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.


Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?

Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.

I have lots of optimistic reading to do today

I can't blog about these articles because:

A. Its too early in the day and my brain is not awake enough to absorb them.
B. I slept really badly last night and I am tired and crankiness may loom in my day.
C. They look long and complicated - a tad daunting, see A and B above.

But here are links to them:

Drug Aims to Make Several Types of Cancer Cells Self Destruct - http://www.nytimes.com/2012/12/23/health/new-drugs-aim-to-make-cells-destroy-cancer.html?ref=science&_r=1&

Is the Cure for Cancer Inside You? - http://www.nytimes.com/2012/12/23/magazine/is-the-cure-for-cancer-inside-you.html?pagewanted=1&_r=3&hp&

I promise to read them, digest them, and give you my opinion in the coming days.

I slept really badly because things hurt. Let me count the ways - back, hips, shoulder, elbow, feet, and hands. I don't think I left anything out but I might have. Oh yes, there was the overly friendly cat who kept on doing donuts on the bed over me. I think he was hungry. But he was annoying.

Its a good thing I have optimistic reading to do today because where does one's mind go when one is awake in the middle of the night? Down that DARK AND EVIL ROAD. You know the one. The one that asks things like:

- the pain isn't because of RA and fibro, its must be the return of the evil cancer cooties.
- when is my next doctor appointment, who is it with and what questions do I have to ask them?
-  did I forget to get anyone's Christmas gift?
- and lastly why didn't I balance the check book since the mortgage is due later this week?

But I digress. I will optimistically read later today. First I need to finish waking up, go to the grocery store, and then to the gym. And take a nap.

PS the picture at the top of my blog is from our hotel room window at sunrise at Southport, ME in September.

Communication, optimism, and honesty

A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:

• "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ­patients with advanced colo­rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
• Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.

Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?

A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.

I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.

I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.

I got the d*mn memo

The current advice is to be 'Fit by 40'. Because as you age its harder and harder to lose weight and to stay in shape. As my 40th birthday approached, I told myself that I would take better care of myself when I was in my 40s.

As part of my birthday celebration (which included a planned Caribbean vacation):

• I joined a gym
• I got my first skin cancer checkup
• I joined a dating service after several years of being single (and met my husband)

I actually had a few years of being fit and healthy and then my pesky health issues started and that cancer thing, but now more than a decade later I am a gym junkie where I go three times a week.

So I did get the damn memo on being fit at 40 and take care of my health. Its not my fault everything else happened and put me in my current dilapidated state. But before I start the 'woe is me' mentality, I will say I am proud of myself for some of the things I have accomplished in that time.

• I learned to kayak and snow shoe
• I took up knitting and crocheting and hope to sell some items in a local store this fall
• I greatly increased my medical vocabulary
• I took a weedy neglected garden at the house we bought and now can say it will bloom from February through November (no small feat in southern New England)
• I made lots of new friends both on and off line
• I started a little blog.
• I think I just made lemonade out of life's lemons.

Wishing for what isn't

I came across an article and video from a young mother dying of cancer who wants the FDA to release a drug for her that might help her live a little longer. (I admit I didn't watch the whole video.) The article wanders on and discusses the costs of having cancer which is a completely separate, but very important, issue that I won't get into here today. Probably another day that will end up here, again.

While I feel for this young mother who is dying of cancer, I would like to make a point here. She is pleading with the FDA to release a drug which might extend her life. The article notes at the end that the drug manufacturer is working with her doctors on getting her the medication.

But my point is that we can wish for everything we want but we can't assume that we will get what we want and that it will help us the way we want. At every cancer or other icky diagnosis, we wish they could make it go away. But wishes don't solve problems.

As cancer people, we want to be optimistic as we go through treatment. We hope that with every treatment all the evil cancer cooties in our bodies are being killed off. We dream of the days when we have hair, can eat a meal without fighting nausea, and all our treatments and surgeries are done. Optimism goes a long way in treatment. It keeps us positive.

I also think that wishes can cloud our judgement. We can't wish for things that don't exist. We would like to have that cancer free world that exists in Star Trek but we aren't there yet.

This young mother is getting the drug she believes will give her more time before dying. But do we know if it will really work for her and relieve her pain and let her live a little longer? No we don't. So she gets her wish but there is no guarantee.

On January 1, I made my wish list for the year. We can just say I didn't get what I wanted. Maybe I was overly optimistic but I only wanted a healthy year, a year free of political mudslinging, a year of international stability and a year of tolerance. Not much.

Well where did we get to? The political mudslinging is getting ridiculous and as a note to anyone who aspires to get into politics - I will just say if you ever want to cheat on your spouse or tax return or change your mind about anything, please be sure to have a good reason to do so. On the international stability front, I feel the Doomsday clock (do we even still have that) ticking away: North Korea leadership, Greek and Italian economics, Iraq/Iran/Afghanistan/Libya/Egypt/a few more countries and their uprisings/protests/change of leadership. And the list goes on and on and on.

Tolerance? Well we certainly don't have that since we have political mudslinging and international instability. I do however see some progress in that. I am not saying its perfect but I feel progress. Talk to someone in a younger generation in the US and most of them are color blind - they don't care about the skin color of their friends and family members. Most have always gone to an integrated school where more than one language was spoken by their friends' families. I see progress in gay rights - it has its ups and downs but is staying at the forefront instead of being pushed off to the side so things are changing. We still have the stupid Westboro Baptist Church and other bigots around to spread hate and probably always will have to put up with other people's narrow-mindedness. But I do feel some optimism here.

On my health, well that's another story. I had another record number of doctor appointments this year - for some reason I keep count (well really its because Excel helpfully numbers the lines in the spreadsheet where I keep track of medical expenses so they can be deducted from our taxes). On one hand I have not had any kind of surgery for over 3 years (unless you count minor back procedures), but on the other I have body parts which are being problematic and if they don't get back in line soon that may end. I also am not being treated for anything too significant - unless you count post cancer as significant which I try to ignore. My back is being decidedly uncooperative these days which gives me lots of pain which sometimes leads to crabbiness and other problems. I did join a new gym in 2011 and am working on getting in better shape. Next step is to actually lose some more weight. I have also tried acupuncture for pain and other issues and will continue to do so.

So at the end of yet another year that didn't go as planned, I will have to come up with some new hopes for the future. Perhaps I will focus on smaller things like fitting into my size 8 pants again.

A little more optimism

I happily discovered this article yesterday - that someone else helpfully posted on a cancer message board which greatly eased my internet roamings. It seems we are getting closer to that Star Trek utopia where they talk about cancer being cured in the 21st century as a cancer vaccine is looking more and more promising. There are some that have been tested and are in the development pipeline. This means that actual marketability is within a reasonable range of years - provided that they get through clinical trials.

Imagine a world with out cancer. Is it possible?

- All medical professionals would need to be retrained
- Chemotherapy drug manufacturers would need to find new products
- All those nasty cancer treatment side effects would no longer be a problem.
- People would live longer.

Next step a cure for the common cold and world peace.

The incurable ailment

Yes there is more than one incurable ailment. Cancer has no cure, but neither does optimism. I try to be optimistic. Really, (stop snickering at me) I am an optimist. I admit when diagnosed with cancer it slipped for a time. But a therapist and a support group and taking some time to cope has returned me to my optimistic state.

(My friends who are reading this should stop snickering, saying 'yeah, right' and pay attention here.) Last week while on a road trip/vacation with my husband he was muttering about the economy once again, convinced that we are going to financial hell in a hand basket. I informed him that he was a complete pessimist - which he denied and blamed the politicians. I responded by saying he is a half-empty guy and I am more of a half-full girl. He muttered in response.

Then I started thinking - which we all know is a bad thing but that is what happens when you drive a car for four hours and are trying to pretend your back isn't hurting while your husband reads his book. I decided that these days I am fairly optimistic.

Yes my health is what we can define as 'less than stellar' to put it mildly but I am still here. I may not be working to my full potential but I am enjoying my work/life balance and don't feel I'll be out on the street at retirement - and perhaps the house will be paid off by then. My husband and I are happy. The cat has returned from his vacation and actually seems to have missed us. Financially we are doing okay (but if you have a spare million or two that you wouldn't miss you can feel free to send it my way).

My health seems to be my big issue but I haven't had a doctor appointment for a couple weeks and don't have one for another few weeks. I am trying to get into see my back pain doctor but that doesn't seem to be a reality so it will be the end of the month before that happens. September will bring a round of doctors - oncologists, knee doctor, dermatologist, and I can't remember what else. And I am still being an optimist. Maybe because I have already heard the worst I can from a doctor (cancer, incurable back pain, etc) and because I am on antidepressants (which could be contributing).

However I am happy to be considered an optimist at this point. Life gave me lemons for a while and I made some lemonade (and considered adding vodka for a while). Optimism is underrated and, fortunately, incurable.

Its all about attitude

I think your attitude going into something greatly affects the outcome, particularly your enjoyment. Its no different with cancer. When I was diagnosed with breast cancer, I was very upset/depressed/stressed for some time. Then I decided since I was lucky enough to have cancer twice, I need to make the best of it.

I have many cancer friends, some in person, some on line, and they range from stage 0 to late stage IV with the end in sight, and are anywhere between just diagnosed to 25 years out (I never seem to meet anyone who is 30 years out from a diagnosis like me but maybe I was precocious or something.) Their attitudes range from 'I don't even think about it' to 'I'm doomed'.

I think I went through a phase of partial 'I'm doomed' for a bit but then got past it with the help of support groups and therapy. Now I think if I got lucky a third time (and its third time is a charm, not three strikes you're out), I might experience a short term of 'I'm doomed' but would not let myself dwell on it.

Cancer doesn't deserve to suck all the life out of me. Cancer people can have fun and, in fact, deserve to have more fun than just about anyone else. Cancer isn't worthy of anything but disdain. Its not worth hating and its not worth dreading because it is not worthy of any wasted effort on your part.

I have to say I am lucky enough to have cancer because I can't think of it any other way. I can't let it take over my life. I can't let it suck me down into a cloud of despair. I have to go through life looking for four leaf clovers, lucky pennies, and the pot of gold at the end of the rainbow. Maybe cancer made me an optimist.

I am a statistic

The state of Massachusetts keeps a list of cancer statistics on their website. I am not entirely sure why we become statistics but we are.

In the town I live in, there were 197 cases of breast cancer in the five years 2003-2007. There are 196 other women like me in the same town. I probably know 15-20 of them so we can be statistics together.

The National Cancer Institute publishes data on cancer rates on their site which now go from 1975 to 2008 so they include both my cancers.

The American Cancer Society also posts a lot of data on cancer including deaths through 2007 and estimated new cases for 2011.

When I was diagnosed in 2007, all the data available was through 2002 or so. It was rather disappointing because that wasn't what we wanted. The biggest reason for the delay is not only do they have to count all of us but they had to wait for the five year survival rates to be compiled.

Unfortunately, the National Cancer Institute only has limited statistics on five year survival rates for diagnoses occurring through 2007. So we are getting close.

Because face it, all we want to know when we are diagnosed with cancer is:

'What are my chances', 'Am I gonna die?' and 'How soon?'

The numbers, of which there are lots, are never satisfying. The old data does not give us the current story. We are told they are based on the treatments that were available at that time and not on current treatment protocols which are better. It is rather frustrating but we are forced to be optimists.

Well, Whoop Di Doo

I found this article a couple of days ago about new targeted drugs for cancer treatment. My first thought well this is new and exciting and provides great promise for the future. Yes, its for smaller groups but as we know cancer is not one disease but hundreds of different diseases this actually makes sense.

But then my more cynical side shows up and says 'where is the damn cure?' Maybe I'm tired and not getting enough sleep. Maybe I'm cranky - ask my co-worker yesterday who I finally snapped at (he says he can piss off the pope so it was not a big deal) - maybe I'm stressed. Maybe it was the news that a good friend's husband's colon cancer has returned as well as the news that one of my husband's cousin's cancer has returned as well.

Also, this story about a dog who can detect cancer doesn't do anything for my mental state.

Life with cancer is a roller coaster. You get it, they treat it, you worry about it coming back because they haven't figured out a way to prevent that.

But I was optimistic for a few days. I am sure my optimism will return but not this week. So in the meantime my opinion of advances in cancer treatment that are anything short of a cure are 'whoop di doo'.

Looking forward not backwards

After a bad week, I need to focus on looking forward. Why was this a bad week? I was taken off two pain meds and replaced with a new one - my body didn't adapt quite quickly enough. I spent too much time last weekend on my feet and my back hurt. I joined a new gym and they made me EXERCISE! I attempted to be a normal human being. Yet another online cancer person I know died.

Now it is time to put all that behind me. Today I will start looking forward:

- We are going to the travel show tomorrow so we can plan a trip to Iceland - why Iceland? Because its there and we haven't been. Maybe we can win a trip to some place warm between now and then a well.

- I will figure out the giant diagram of the new bathroom vanity as part of our upcoming bathroom & kitchen which will start in about six weeks. I will also attempt to convince my husband I can make mosaic tiles for highlights in the kitchen.

- We will start looking at our taxes - which means take the piles of paper and sort them out so we can give them to our accountant.

- We will go walk in the outdoors and get some fresh air - this hasn't happened recently because of snow drifts and the return of the ice age.

- My husband has promised me a Valentine dinner - that he is making from scratch. Its a secret so he won't tell me about it.

- I will ignore all aches, pains, hot flashes, leg and foot cramps and enjoy myself. I will also ignore all upcoming doctor appointments for either of us. My husband's annual colonoscopy is Friday. He is a little stressed. I am more stressed. He is just happy I can't make him eat whole grain everything for a week and he gets white bread, etc.

Optimism is good for the soul. So is feeling good, a cup of hot tea on a cold day day, a new book from the library, hopes and dreams.

Could this be a hint of future success?

As we are in the long term war on cancer (that was started 40+ years ago - are we headed for another Hundred Years War?), they are finally figuring it out. To win a war, stop focusing on the soldiers and take out the generals who are in charge. Sounds kind of like a 'doh' situation to me.

Basically generals are cancer stem cells, soldiers are regular cancer cells. Most commonly available cancer treatments go after the soldiers and don't kill off enough generals. Well now this is changing.

I don't want to get in to a debate here about embryonic stem cells because this is not the place. Stem cells can come from umbilical cord blood or from adult bone marrow. I have several friends who have had stem cell transplants using bone marrow and one person who had a siblings umbilical cord cells. It seems that the results are showing some progress. This makes me happy. I also like the fact that it is being used and not just another 50 year test.

Maybe I'll be optimistic on this.

Seeing is believing

So headlines this morning report that the new chief of Blue Cross in MA says that reining in costs is a top priority. Well, that sounds like political campaign words - 'its all about taxes' but in the world of health care, its all about premiums and coverage. Call me a skeptic after decades of jumps in health insurance premiums and decreases or more complicated rules for getting coverage. I will take a wait and see approach on this one.

Just the other day, it was reported that a hospital charged $300 for a $17 device. So you can see why I am a skeptic.

One thing I am not a skeptic on is this new study that palliative care extends the life of cancer patients. Back when I was first diagnosed with breast cancer and had two surgeries and was starting chemo and was a tiny bit stressed, I joined a support group at a local non profit (where I now work) which also offered wellness activities including Reiki. I was a skeptic then but desperate - not sleeping, totally stressed, a tiny bit crabby. I was offered a reiki session and poo pooed it. But then I tried it and felt nothing during the session but went home and took a nap - and actually felt rested.

Now the organization I work for, has expanded their offerings to include reiki, meditation, polarity and all sorts of activities for those touched by cancer - current and former patients, caregivers, and family members.

So maybe my skepticism will change to optimisim if the health insurance rates stop having these giant jumps and over charge for things - just like the government was accused of in the past - the $50 box of paper clips.