My Mini Vacation is Ending

I have enjoyed a few weeks without a doctor appointment. I have had 22 appointments so far this year (I have a spreadsheet of doctor appointments to keep track of my co-pays and out of pockets for taxes.) Then I haven't had an appointment for two weeks and don't have one for another week. So its been a three week break. I like that.

Then next week I have three appointments followed by six more in the next six weeks. That's more normal for me. Last year the magic number of appointments was 67, the year before 58.

So if I go to the doctor so often, shouldn't I be healthier?

I forgot to get excited

There were two recent events where I forgot to get excited. First I forgot one of my cancerversaries last week (9 years if you care). My other cancerversary is in August and will be 35 years. I try not to focus on them in my life. My life is not about cancer. Its about me. And I don't want to focus my life on cancer.

Then I forgot National Cancer Survivorship (S-word) Day which was yesterday. I seriously think this is a 'Hallmark' holiday. Something some marketer came up with to sell more 'crap' (I mean 'stuff'). Are people supposed to send cards, chocolates, and flowers? Should we have parties with balloons, cakes? And can we name it without the disputed S-word?

I didn't get excited so I really just forgot them both.

$107 Billion on Cancer Drugs

I did not make up that number. That is how much was spent on cancer drugs world wide last year. Is it really worth it? Does it sound normal to take a drug that costs $10,000 per month? And that $107 billion reflects a 11.5% surge from new drugs introduced last year.

A recent study was done for the National Institute for Health revealed a lot of questions, not a lot of answers. And the real question is are cancer patients getting their money's worth. The main goal of any cancer drug should be a longer life - which would be a cure. Correct me if I am wrong, but that is how I see it. Why else would we want these drugs? Its nice when they reduce pain and make us feel better as well but we really hope that we will live longer.

"The report from IMS Institute for Healthcare Informatics highlights 70 new cancer treatments, treating more than 20 types of tumors, all approved in the past five years. In the United States, where cancer drug spending was $37.8 billion last year, those new drugs alone account for $9.4 billion of the increase since 2010.""

"... Not all approved cancer drugs are alike. Some may provide profound benefits, lengthening life by years; others may significantly shrink a tumor, but increase patients' chances of survival only by small amounts.

Prasad's work has found that the high prices of new cancer drugs don't reliably reflect their novelty or how well they worked in trials. One of his studies, published last year in JAMA Internal Medicine, examined 36 drugs that were approved between 2008 and 2012 based on early indicators that they were working, such as evidence that they shrank tumors. Such measures are meant to speed up drug approvals, but there's no guarantee that a drug that temporarily stops a tumor from growing will extend lives. Only five of the 36 drugs in his study lengthened patients' lives, despite a median of more than four years of follow-up study."

So why are we spending all this money if most of them don't make us live longer? That's not worth $107 billion.

Too Much Pink!

Here is an example of what too much pink has done so much wrong: What is the biggest killer of women? If you said breast cancer, you are wrong. Breast cancer kills one in thirty women. But heart disease kills one in seven. Yes you read that correctly.

So much money and focus has been put on the stupid little pink ribbons that there is now a misconception in the public that have hidden heart disease as the number one killer. As a result, more focus is being put on a mammogram is a life saver instead of a thinner waist.

Obesity can contribute to worse outcomes in breast cancer but it definitely contributes to heart disease. Healthy and active life styles not just help improve outcomes in for breast cancer and even more for heart disease.

Personally, I think we should get rid of 99% of all the pink crap and move the focus to heart disease which is killing far more of us. (But still go for our mammograms.)

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

Would You?

So if you had an incurable cancer and knew you were going to die in the next year, would you try unproven medications? By unproven I mean not yet FDA approved for use on humans so there is no way of knowing it wouldn't kill you sooner?

A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.

"The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?

“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”

For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.