Cancer again....

Did you know that if you have cancer once you have a 3.5-36.9% chance of getting an unrelated second cancer (been there, done that). And that 70% of cancer people have a comorbid condition which requires better medical care for the rest of their life. So maybe you smoked and got one cancer, 15 years later you find you have lung cancer, eve though you quit smoking at your first diagnosis.

No I don't make this stuff up. Someone finally did a study on people who have cancer once and rates of developing a new cancer. They found out lots of interesting things:

• Many people who have cancer once do not take steps to reduce the risk of getting a new cancer.
• People who are successfully treated for early breast or lung cancer are likely to live a long time, thus increasing their risk of developing a new cancer 
• They are excluded from clinical trials which may prevent them from having access to the best potential treatment for thei new cancer

So where does this leave us? 

• Post cancer patients should continue to see specialists after a cancer.
• They should  receive  counseling on how to reduce their risk of additional cancers even more than people who have not had cancer previously. 
• Post cancer people should be included in clinical trials. 

Us cancer people need to stick together and reduce our risk of more cancer

Favorites During Chemo

When you are starting chemo, you are warned not to eat your favorite foods during chemo because if chemo makes them taste bad you will never be able to enjoy them again. It's also true of activities that you are able to enjoy doing during chemo.

When I was in chemo, I spent a lot of quality time watching bad tv with the cat sitting next to me. The cat would sit next to me all the time. Watching tv was okay because I could barely focus and could watch the same movies over and over again. They were peripherals.

I still have not eaten one shrimp or scallions. If I smelled scallions during chemo I would have to leave the room because of the smell.  I used to love shrimp and don't really remember eating them much during chemo, but I can't stand them these days.

During chemo, I started knitting and crocheting. This has since lead to weaving and an unhealthy stash of yarn. I don't crochet as muss I used to but I definitely knit and weave. I enjoy them. I find it relaxing. I also enjoy finding colors and texture that work together, or figuring out a new pattern.

But then when knitting or weaving, if I start to think about how I got involved in them again it makes me sad and think about chemo again, and cancer and go back down that cancer road again. Which really sucks in some ways.

But I try to make myself forget all about it and push it out of my brain so I can enjoy myself doing the things I like. Cancer can really suck!

Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.

The Young Adult Ignored Cancer Patients

This is one of my pet peeves. Children with cancer have their mature, sane parents advocating for them. Adults with cancer can advocate for themselves.

The young adults - 15 to 30s - often don't find the same support or resources. First they are still trying to figure out who they are and what they will do with their life. Second, they are learning to be independent and should be focusing on their education and careers, not going to chemotherapy. There is hope now that online resources can help fill the gaps for the patients and maybe for the doctors as well.

"In addition, they will probably go on to live long lives and the harsh realities of their cancer treatment can leave them fundamentally changed forever. Issues such as infertility, cardiac damage, or even damaged blood vessels from infusions can further complicate their lives forever.

Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.
In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.

According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups."

All age groups show improvement in cancer survival rates between 1975 and 1997 except young adults - where the rates were lesser or even decreased, for 30-34 year olds.

""In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.

Why worse improvement in survival for those patients?

"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.

There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."

Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.

This means oncologists may be unsure what dose to give a teen or young adult, Grundy says."

In the meantime, it is important for patients to find the support to help them get through cancer. I learned this at my first diagnosis at age 19, when there was no internet or other cancer patients to talk to. By my second diagnosis at 45 I dove in social media to find other cancer people like me.

My points here are for young adult cancer patients:

• You are not alone. Go to social media and find other people who are coping. In addition to 
• Your doctors may not be used to cancer patients your age so speak up, ask questions, ask about side effects.
• Draft a friend, spouse, family member to be your cancer buddy to take with you to doctor appointments to help you digest what you learn at each appointment. 
• Take things one step at a time. Educate yourself in stages. Don't worry about radiation until you get through chemotherapy. Don't worry about chemotherapy until get through surgery.

And if you have cancer and need a shoulder to lean on, try me. Leave me a message with contact info or find me on Facebook. 

In addition to all the social media resources in the article, my favorite one is Stupidcancer.org. 

San Antonio Breast Cancer Symposium

I have found there are two key conferences to follow to keep up with the latest cancer news annually. First of all, each June there is the annual ASCO (American Society of Clinical Oncologists) conference held around the country. As oncologists come together and the outcome produces a slew of new research news for all types of cancer translated into normal English.

Second, is the annual San Antonio Breast Cancer Symposium held in early/mid-December each year in San Antonio TX. That was just held and so much news was just released. There was so much new news that you should go read it all yourself if you want to stay up on the latest.

As with any professional conference, this is when a group of professionals who are scattered across the country, and the rest of the world, get together and find out about new research, get ideas for more research, and compare notes. The benefit to us cancer people is huuuuggggge.

So go read.

Screening Recommendations Based on Doctor Personal Experiences

Recently in JAMA, "...a research letter... explores how social interactions with friends, family and colleagues who have been diagnosed with breast cancer may affect a physician’s recommendations to patients."

What it found was that a doctor's personal experiences impact what they recommend for their patients. They did not necessarily follow the current guidelines. 

"Physicians familiar with someone with a poor prognosis who was not diagnosed via screening were much more likely to recommend routine checks for women between 40 and 44 years old and those over 75."

“Describing a woman whose breast cancer was not diagnosed by screening mammogram and who had a poor prognosis was associated with increased odds of recommending routine screening to patients within the designated younger and older age groups for which guidelines no longer support routine, universal screening,” Pollack et al. wrote." 

In my personal experience, my rheumatologist has been very hesitant to prescribe a biologic, such as Humira or Enbrel, for my rheumatoid arthritis. It is standard not to prescribe them to anyone who has been diagnosed with any cancer in the past five years because there is a TNF (Tumor Necrosing Factor) in them. 

Although I am more than ten years out from breast cancer and over 30 years out from thyroid cancer that translates to two cancer diagnoses before the age of 50. So she has been very hesitant. She even has conferred with my oncologist on this. Finally she has prescribed me Orencia which I have just started.

And the truth came out. At a recent appointment she told me that she had a patient who had had cancer and was over five years out from her diagnosis. My rheumatologist put her on a biologic for her RA and then she had a cancer recurrence. Who knows if the two were connected but that has had an impact on my rheumatologist. And she doesn't want to have this happen to any more of her patients.

“Our results suggest that helping clinicians reflect on how their experiences influence their current screening patterns may be an important approach to improve adherence to revised breast cancer screening guidelines.”

From a patient's point of view, I want impartial treatment for all my ailments. But there is so my crossover and overlap between them that discussions are often required. Due to my medical history, I have 'received' more screenings (a/k/a medical misadventures) than anyone else I know. I want the doctors to bend the guidelines to help me as best as possible.

Aggressive Breast Cancer In Younger Women

Younger women with breast cancer always seem to (my tiny non-medical mind) be either very late stage and/or aggressive and require more aggressive treatment. And some new research may explain why.

"Researchers at the University of Southampton in the United Kingdom found that women aged 15–39 who had early-onset breast cancer possessed specific gene variations that were associated with increased disease progression.

Lead study author Dr. William Tapper — from the Faculty of Medicine at the University of Southampton — and team say that their results not only shed light on why younger women with breast cancer have lower survival rates, but they could also offer new treatment targets for the disease."
This news seems to be leading to a real breakthrough. I have always found it interesting that young women were diagnosed with late stage breast cancer and required aggressive treatment. Yes you can argue that under 40 they are unlikely to receive regular mammograms so their disease was more likely to be caught at a later stage. But it seems to happen too frequently to be chance.

Now a gene variation has been found that could be the root of this.

"Among younger women diagnosed with early-onset breast cancer, it was found that two single nucleotide polymorphisms (SNPs) in the ADAMTSL1 gene were associated with greater risk of disease progression.

SNPs are variations in a DNA sequence that can affect how a gene functions, and this plays a role in disease.

The researchers say that this finding "suggests that unique disease mechanisms may influence survival in younger women and provide some biological insight into why younger-onset breast cancer has a worse prognosis."

What is more, Dr. Tapper and team say that the results could pave the way to new diagnostic and treatment strategies for young women diagnosed with early-onset breast cancer.

"Our findings increase our understanding of the genes and pathways that are involved in breast cancer prognosis, and may provide new targets for the development of novel therapies." - Dr. William Tapper

"In the short- to medium-term," continues Dr. Tapper, "this genetic factor may be used to improve prognostic models."

"In the long-term," he adds, "when more is known about the mechanism underlying this association and its relationship with treatment response, it may have an influence on approaches to the most effective breast cancer treatments."

So this is a real breakthrough. It could explain why some younger women have a more aggressive cancer, lead to better treatment for those with this variation, and lead to real changes in the future for all women with breast cancer.

Time Sense With Cancer

I love xkcd.com

Feel Like I'm Back Twenty Steps

Finally I am feeling better and my post surgery recovery seems almost complete. The signs are there because I actually felt able to bring in the empty trash barrels and recycling bins (put everything in the big barrel and wheel it down the driveway). This is the first time since early October I have felt up to that. My husband even noticed.

I was all set to go to the gym this week for the first time in months but I woke up Monday with a temperature (101.5) and thought I had the flu. It wasn't the flu. It wasn't an ear infection. It was just your basic run of the mill cold. It set me back - I postponed everything from this week to next week and am still dragging around some.

However, I do now feel better but feel horribly out of shape. I lost weight after sitting around for a couple of months and now have a fatter gut. I get tired easily - probably because:
I'm out of shape
I'm recovering from surgery
I'm out of shape
I'm getting over a cold
I'm out of shape
I've sat on my butt for more than 10 weeks
I'm out of shape

But now my goal is to work on getting back in shape. I really need to.

When I was diagnosed with RA and fibromyalgia, I was very pleased at the fact that I had been working out regularly and was in relatively good shape and was better off than many others when diagnosed. Now I feel twenty steps back from where I was. I am not in shape now. It will be ten times harder to get back in shape than without RA and fibromyalgia.

So Monday I go to PT for the second to last time. Tuesday I go to the gym for the first time in 2.5 months. Then with any luck, I will be back to regular gym visits and work on slowly getting back in shape. The key word is 'slowly' but I'll work on getting back those 20 steps.....

Clinical Trial Exclusions

A recent SEER report looked at the incidence of  previous cancer diagnoses in newly diagnosed patients. An average of 18% of newly diagnosed cancer patients have previously been diagnosed with cancer. (25% of  patients over the age of 65 and 11% of those under 65.)  All these people will also probably exempted from any clinical trials for their new cancer because of their previous cancer.

"The investigators concluded: “A substantial proportion of patients diagnosed with incident cancer in the United States have survived a prior cancer. These patients may be excluded from clinical trials and underrepresented in observational research, and little is known about their treatment and survivorship needs. Understanding the nature and impact of prior cancer is critical to improving clinical trial accrual and generalizability, disease outcomes, and patient experience.”"
I am in this group with two cancers before the age of 50. I have never participated in a clinical trial. Why? Because my previous cancer always exempts me.

While I understand that clinical trials try to keep their participants as homogeneous as possible to prove product safety. However, the problem is it excludes a lot of people. Why should my medical history bar me from potentially benefiting from a clinical trial medication? And why can't I help future medical care by participating in a clinical trial? And its not just me, its the other 18% of the population which already has had cancer and has been diagnosed with another one.

I just took a peek at a few trials over on clinicaltrials.gov and easily found some with exclusions that include:

• Prior cancer diagnosis or chemotherapy treatment.
• Active autoimmune disorder.

Here I would not be accepted because of my two cancer diagnoses, chemotherapy, and active RA. (This can make me feel like no one loves me.... and I could get a complex here.)

I think it is time that clinical trails reflect the population - we are aging, we have medical histories, 18% of us have lived through cancer. 18% of clinical trials should include patients with a history of cancer. We live through cancer but we can't participate. Not fair to us nor to future patients who might benefit from our medical histories.

Tumor Evolution

It turns out that tumors do evolve. And the result of the evolution is that sometimes the cancer treatment stops working.

"A new study by researchers at Huntsman Cancer Institute (HCI) at the University of Utah observed how breast cancer tumors evolve over time and demonstrated how changes within tumors may contribute to the process by which cancers no longer respond to treatment. Further, the research identifies that some of these changes may be shared across certain treatment-resistant breast cancers."

The problem in examining tumors is getting samples because that is that can be invasive. You can't really say to a woman with breast cancer 'be sure to stop by for your yearly tumor biopsy'. They really do not want to keep the tumor around if they don't have to. So they had to be unique, which also meant a very small study size:

"For this study, Werner and her collaborators were able to trace the timeline of treatment of four breast cancer patients, over the course of between two to fifteen years for the patients analyzed. In a unique collaboration between several researchers and medical oncologists, samples of cancerous tissues were collected from breast cancer patients during their regular course of treatment. The tissue samples were then sequenced to study how the samples changed over time and how the tumors responded to each treatment. Using these data, the researchers were able to assess how changes in the tumor coincided with when the patient's cancer stopped responding to treatment."

Four patients is a very small study. However what can be learned from this study can lead to new research. Due to the invasiveness of tumor access, I can't see how tumor access is going to ever be much easier. With most patients, tumors are removed as soon as possible. I guess if there is a recurrence, presto you get a new tumor to biopsy - but if its not the same tumor does it count? Or sometimes tumors are not removed right away because chemo is used to shrink them..... But what do I know? I am a mere patient who is rambling on here.

"The ultimate goal for the researchers is to understand what is happening in a patient's tumor in as close to real time as possible, to predict what will happen next, and to adjust treatment accordingly.

Two new clinical trials set to start early next year at HCI and City of Hope will build on this research. Werner says "ultimately we want to actually predict what is really going to work best for your tumor during the course of your disease. While we're not ready to apply this to standard patient treatment now, with this work we are one step closer to doing that."

So if this tiny study is going to result in more research, I am all for it. You have to start some where and I find it fascinating that this area is one to be explored. I never really considered tumor evolution but if you think about it, tumors must acquire new characteristics as they grow in size. I'm ready to learn more and wait for more results.

Friendships

This has come up time and again but for some reason I have seen it more often in my Facebook feed in the last few weeks. Friendships - they come and go. We make friends and we lose friends. Some friends we lose when we change and move on - maybe we used to work together, live next door to each other, go to school together, or some other commonality which held us together but doesn't any more.

Other times we opt to lose our friends when they appear to have changed. The point is from your perception you don't really want them as a friend any more. For instance, if you had a friend and they did something unethical/illegal wouldn't you be uncomfortable with their friendship? I don't know anyone who did anything illegal but can think of a several instances where two different friends made me very uncomfortable with their ethical choices.

Or what if you think your friend is developing emotional issues and they refuse to take care of themselves, to take any advice on it, and do not consider themselves to have any emotional problems. An example is that if you had a friend who became a hoarder, what would you do? What can you do? Hoarding is characteristic which is telling us something more is going on with them emotionally. They need help but if they are in denial over their situation, what can you do?

What if you think your friend is just using you? I had a friend and, I kid you not, for a couple of years she used to call me to see how the traffic was before she drove home from work. Her rationale was that I was home and could look it up on the TV for her. I finally resorted to telling her, for several months, that I have no idea, the TV isn't on, before she finally figured this out. Um, you have the internet don't you?

Then there are the people who are chronically late, for everything. All the time. They can't get anywhere on time. Being late happens to everyone - a flat tire, etc - but not every single time. And late by an hour or more. It is incredibly rude to be late. It says 'I am way more important than anyone else so everyone can just wait for me'. Did you ever try to get a group of people together for lunch at 12 and have one call at 5 til to say they just woke up and will be there in an hour? (I just wonder how people like that keep their jobs because if they can't do anything on time, can they ever meet a work deadline?)

Finally, another part of friendships is what if you have changed? That is certainly the case with me. I have changed significantly over the last decade. My health has been greatly altered and I no longer have the same coping skills I did before. I don't have the patience or the physical ability to wait for people. Nor can I cope with anyone else's emotional issues. I have plenty of my own these days. It upsets me that I don't have the physical and emotional bandwidth I used to and I work on coping with that.

I also realize that I can no longer do a lot of the things I used to do - like hike, go out to dinner, stay up late, etc - so the friends I used to see at those events I no longer do see. But I would be happy to see them if things worked out and I was physically able to attend.

As my life has changed my friends have changed. It can be sad to lose friends but sometimes its necessary to lose them.

Breast Cancer the Socially Acceptable Cancer

A breast cancer diagnosis is no fun. Actually any cancer diagnosis is no fun. We all know that. But maybe because of all the 'awareness', it is now more socially acceptable than other forms of cancer. Isn't that just weird? I think so.

Meanwhile, a woman in New Zealand was diagnosed with stage IV lung cancer and she wonders if breast cancer would be better because of the stigma surrounding smoking and lung cancer.

I think lung cancer is the only cancer which is regarded as 'self inflicted'.  Face it, as normal human beings we associate lung cancer with smoking. But not all smokers get lung cancer and not all lung cancer patients were smokers. I think we look at lung cancer patients, even us former smokers, as people who have done it to themselves. They smoked and they got the lung cancer they 'deserved'.

The problem then is with the original cancer stigma, all cancer patients can feel isolated and alone. Which is no fun. But lung cancer with its added stigma makes it even worse. How to find the best support when you don't have the 'in' cancer?

First of all breast cancer patients seem to be all around us but lung cancer patients are fewer and harder to find. Then its got this additional stigma. I think all cancers should be equally treated with the same resources available for all.

That Lingering Risk Thingy

I can't say how much this just aggravates me. You get breast cancer. You get treatment and then they say we will see you once a year. You are NED (No Evidence Of Disease) for now. If you are hormone receptor positive (ER+/PR+) you get to take a little pill (tamoxifen or aromatase inhibitors) that should help you stay that way.

But there is always that lingering risk of recurrence. That's the one thing none of us want. A new study which looked at data from 88 different clinical trials over more than 20 years found that the risk of recurrence lingers after the AIs are ended.

"Researchers from the Early Breast Cancer Trialists' Collaborative Group analyzed data from 88 clinical trials involving 62,923 women with ER-positive breast cancer. The patients all received endocrine therapy for five years and were free of cancer when they stopped therapy.

Over the next 15 years, however, a steady number of these women saw their cancer spread throughout the body, as late as 20 years after the initial diagnosis.

"Even though these women remained free of recurrence in the first five years, the risk of having their cancer recur elsewhere (for example in the bone, liver or lung) from years five to 20 remained constant," says senior study author Daniel F. Hayes, M.D., Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Comprehensive Cancer Center.

The risk of recurrence was directly tied to the original cancer's size and characteristics, and to the number of lymph nodes that were cancerous.

Among patients who were recurrence-free when they stopped taking endocrine therapy after five years, the highest risk of recurrence was for those with originally large tumors and cancer that had spread to four or more lymph nodes. These women had a 40 percent risk of a distant cancer recurrence over the next 15 years. Women with small, low-grade cancers and no spread to the lymph nodes had a much lower 10 percent risk of cancer spreading distantly during the following 15 years."

Isn't this comforting? On my part, I had a relatively small, moderately aggressive, and one positive lymph node. So that must put me in between the 10 and 40% risk of recurrence. Also, I am on the schedule for AIs for up to ten years. Maybe I will ask if I can continue them? But being on AIs only lowers your risk of recurrence, does not remove your risk of recurrence.

However, I do put a lot of credibility into this study as it reanalyzed data from so many studies. This is the kind of research that is the 'more research that was needed'. This just aggravates me that in this day and age, we still do not have a cure.

There goes my warm fuzzy feeling for the day. And you wonder why I deal with stress, depression, and anxiety.

Personalizing Personalized Medicine

What is personalization? Its making things for the individual. This is seen all the time online. If you visit Amazon's website and search for toothpicks, you will start seeing ads for toothpicks popping up all the time. Until you search for something else.... Amazon's site is responding to your needs by reminding you about your recent search - meeting your needs.

Personalizing personalized medicine means not doing the same thing over and over again, and taking into account patient's individual needs. However, we talk about personalized medicine and then discuss starting mammogram screening for all women at age 40. Where is the personalized part of that? Its just changing the requirement for insurance companies. And no mention of who pays for the additional screenings.

Take this opinion for example, from Dr Montijo on Clinical Advisor:

"I am often concerned about articles summarizing screening mammography data. Without fail, organizations that materially benefit most from performing mammography conclude and advocate more frequent and earlier screening mammography. Organizations composed of primary care or with minimal material benefit conclude that a more conservative screening program and more personalization, such as shared decision making, has the greatest net benefit. The cost alone, from the most aggressive screening design to the most conservative design, is in the billions of dollars. No tradeoff analysis of alternative uses of such cost is entertained."

Again, just because we can, doesn't mean we should all the time.

"Mammography started in the early 1950s with a study from HIP of New York, among others. The use of screening mammography increased precipitously during the ensuing decades typical of new technology, often for assumed or wished for benefits. A major industry was born. As happens with most new technologies, finding the optimal use or non-use takes time but almost always perseveres past the optimal benefit point or in some cases full retirement."

I am not saying mammography does not have its benefits. It does. Some women should start screenings early. Maybe in their 20s - I had a benign lump at 23 and have had annual mammograms since. My breast cancer was found at age 45. And another benign lump appeared at age 46. I am someone who needed mammograms starting young. But this does not apply to everyone. 

In my opinion, anyone who is BRCA positive or has a family history of breast cancer should have annual screenings start at age 25 even. That should not be a discussion, but should be a standard for those women. I am sure there are other cases like this where mammograms should start early.

This is a basic idea to start a personalization discussion with an individual patient. But a global requirement for everyone doesn't help. Mammograms have a financial cost but also the cost of missed time at work for the patient to go to the appointment as well as emotional stress for the patient.

We need much more personalization if we are to make any progress in this area.

I'm Tired

I'm watching the new season of Top Chef so I can say I got myself in the weeds for rest this week. I think the term of being in the weeds is a restaurant kitchen term. It started when I had a two day craft show last weekend, followed by houseguests all week. They were my cousins and I was glad to see them. But I didn't get enough rest.

Today I'm staying in bed and resting. For tomorrow's craft show and a friend's party. And making brownies for the party.

But in the meantime, I am lying in bed as long as I can today.

Waiting for Cancer Research

After 12 years (how the heck did that happen?) of breast cancer coping, I have actually seen some cancer research go from new or in clinical trials to become standard of care. This includes length of hormonal treatment for breast cancer patients. But it does not include many, many others.

Some cancer 'breakthroughs' are still in trials, or have vanished because they didn't work. They provide us cancer people with instant elation at the possibilities it hints at, followed by deflation as we realize it is years or decades in the future.

An example of this is this news that at UVA they are working to find a way to stop triple negative breast cancer, which is aggressive and harder to treat than other types of breast cancer. Here's the elation:

"So-called “triple-negative” breast cancer is a particularly aggressive and difficult-to-treat form. It accounts for only about 10 percent of breast cancer cases, but is responsible for about 25 percent of breast cancer fatalities.

Triple-negative breast cancer earns its name because, unlike other breast cancer subtypes, its cells test negative for estrogen and progesterone receptors, as well as for a gene called HER2. Therefore, it cannot respond to therapies that inhibit cancer-growing signals that come from estrogen, progesterone and HER2. The only treatment options for triple-negative breast cancer are surgery, radiation therapy and chemotherapy, each of which cause difficult side effects and rarely lead to remission.

Triple-negative breast cancer is also highly variable from patient to patient and even among tumor cells of a single patient, making it difficult to understand and treat. Other breast cancer subtypes are homogeneous, more predictable and treatable.

University of Virginia researchers are working to study this variability and find an end-around method to stop triple-negative breast cancer, by seeking out unknown or little-understood routes toward shutting down uncoordinated growth."

Followed by the deflation:

“We’re still early in this investigation, but it may be a step in the right direction for getting a handle on ways to target this very difficult to treat breast cancer subtype.”

So how many years do we have to wait for this 'step in the right direction' to lead to something that is routinely available?  Will my friends with triple negative still be here to benefit from it or will it be here too late for them? 

Post Surgery Recovery

Its exactly 8 weeks and one day since my knee surgery that made me rest more for longer than I have had to in many years. I was told 4-5 months of rehab for my meniscus repair. Now I am at the end of month two and realize I still have many more weeks of rehab in front of me.

The first month I was not allowed to drive so I sat around and gained back the ten pounds I had just lost. I got a lot of reading and knitting done and binge watched way too much TV. The cats liked me to be home and sit around a lot so they got attention. I had to postpone many doctor appointments. The only thing I did get to do was go to physical therapy twice a week.

In the second month, I was allowed to drive and do more things. I started going out of the house and going to all the postponed doctor appointments as well as the grocery store, library, etc, as well as PT. This meant as I resumed my normal activities I hit the exhaustion plateau more frequently. I got out of shape (and fat) while sitting around for a month.

In addition, as I am doing more, I am making my knee hurt. Every PT session starts with ten minutes on the bike to get started. Yesterday, at minute 6 my knee started hurting so I had to move on to other tortures prematurely. The therapists told me its because I have been exerting myself that my knee is telling me that its not quite ready for everything I am putting it through quite yet.

At the beginning of the third month, I am seeing the end of PT. Three more visits to go before I return to the gym. I think the only reason I am ending PT so soon is because the gym I go to (for dilapidated people) is run by physical therapists and I will revise my workout with one of them before any exercise.

But at least I can look forward to going to the gym. The gym is where I spent nearly two hours three days a week. I chat with lots of different people there as well as get in a good workout. Its a big event for me - both the exercise and the socializing. I can't wait.

I just hope my knee is up to it. I realize that I can't just hop back into an hour of cardio followed by 45 minutes or more of stretching, weights, and resistance exercises. But I am getting frustrated with the amount of effort it takes me to do much along with the length of recovery required afterwards. Also, its the wrong season to sit around with an ice pack on my knee....

I am recovering. If I have come this far in two months, I should be able to get back in shape in another two.... I hope?

Not My Story To Tell

One important issue when you have cancer or anything else 'yucky' is that well meaning friends and relatives often take it upon themselves to retell your story, with embellishments, to others. Its not their story to tell.

As the patient, you have the right to decide who to tell, what to tell, and when to tell about your ailment. This is one of the big reasons I have a blog. I get to funnel the information and tell what I want after I have a chance to digest it, when I want to tell it.

You might have noticed I do not write about other's health challenges. I might mention someone but I don't tell their story. Its not my story to tell. Its theirs.

This is an important point to remember. You are not entitled to retell all the details of someone else's medical misadventure. Its okay to tell people that someone is coping with their ailment. If the patient has consented, you can tell others how they are doing. But you don't get to tell the blow by blow story of it. And even if they have consented, you are not their PR agent spilling all.

Patient, Yuckyailment, is the one who gets to decide who gets told what amount of information. Being sick is a private matter. So get your nose out of it.

Supporting Your Friends Through Your Cancer

Say what? You know that line 'don't my your problems, my problems'? This is clearly the case here. Yes, sometimes your friends want emotional support because of your illness.

One of my closest friends mostly vanished from my life during my treatment. Yes she has a very busy schedule and she had a small child at that time. Her mother was also very ill. But I missed her emotional support during that time.

Currently and in the past, we would talk at least once a week and get together once a month. But during that treatment time period, I didn't talk to her for months. I had other friends but I missed her. Later one of our mutual friends told me she had a very hard time dealing with my diagnosis. So maybe it was better we did not talk as often.

I am not blaming her at all. I had enough going on dealing with my diagnosis and treatment that I couldn't have coped with anything else. Today's 'Ask Amy' column rang a bell for me:

"Dear Amy: I’ve recently been diagnosed with breast cancer and have focused my emotional bandwidth on my family, my health and curing my cancer. I have a huge support system that includes family and friends. One of my close friends is having trouble coming to terms with my diagnosis, as well as my not taking her up on her offers of help (yet).

"This friend called a few nights ago sobbing and looking to me to help her feel better about my diagnosis and my long-term prospects. My diagnosis isn’t as good as it could be, but it’s also not as bad as it could be. I did my best to help her understand, and then changed the subject.

I’d really rather not be calming down my friends when inside I’m losing my mind with the slow pace of health care and juggling my appointments and treatments.

Is there a gentle and polite way to explain the “grief circles” to her that’s nonconfrontational? I could really use some help, as I have months and months of work concentrating on my health ahead. I’d like to kindly and gently explain to my friend that I cannot be the person making her feel better about my illness.

Your suggestions?  —Not Dead in California

"Dear Not Dead: “Grief circles,” otherwise known as “ring theory” conceptualizes the important idea that, when dealing with tough or tragic times, it is important for the person at the center of the circle (that’s you) to preserve her strength by only dealing with the person most intimately involved in her care — this might be a spouse, family member, or friend. Other relationships arrange outward in concentric rings. This is called the “kvetching order.” 

The person at the center of the ring (you) can say anything (complain, cry, howl at the moon) to those in outer rings, but those in outer rings should limit their own needs, fears, and statements and focus only on being helpful. No unsolicited advice, no raging at the injustice of it all, no demands for comfort or constant updates. 

Honestly, this seems so logical that it should not need to be spelled out, but understand that ring theory is mainly for you — to give you permission to react the way you want to during a time when you need to preserve your strength (and “emotional bandwidth”). In short, you are not supposed to be worrying about how to be gentle and polite, comforting your friend through your crisis.

You could say, “I understand that this is hard for you, but I can’t help you through this. I’ve got too much on my plate. I hope you understand.” Encourage her to contact someone else in an outer ring when she is upset."

I can honestly understand that some people fall apart when people they care about get a nasty medical diagnosis. I think that is what happened with my friend. Our diminished communication was her way of coping. We are now closer friends than ever.

Cancer Friends

For the past two days I have spent time with different cancer friends. I call them cancer friends because I met them all through cancer situations - one group from my old support group and two others I met at different cancer retreats.

What was the gist of all our conversations? Our health and our numbers of ailments. We all have ailments we are coping with. Some of us have new or potential ailments which bring us concern. Some of the ailments are side effects of our cancer treatments. We do not all have cancer concerns right now but that always lurk in the background. And we all know it will never go away.

We shared test results, doctor opinions, traded doctor referrals, and shared our concerns. We tell our medical concerns that we may not have yet shared elsewhere. Our ailments are not all cancer related  We got bolstered through our conversations. They were like mini support groups.

This is the benefit from cancer friends. Cancer is not something to do alone. You need cancer friends to get through it. Then they become life long friends.

I'm having lunch with another cancer friend next week to look forward to. More emotional support for both of us.

More Not Blogging

I have been very busy the last few day weeks. Now that I can drive, I have been driving and going places and thus wearing myself out and making my knee hurt. I had Thanksgiving prep for food and house guests and dinner for 14. I also have had some doctor appointments that were postponed from when I couldn't drive. I still have lots more appointments for the same reason as well as PT for my knee.

So now that I am getting back to normal I have things on my mind for blogging topics. They will not get all the coverage due  because I have been a slacker for my reasons above.

• I have pondered the issue of losing friends and making new friends. In the past year, I have lost two friends. Mostly because of my actions because I could no longer with their actions at attitudes. When you part ways with long time friends I think the holidays make you notice their absence more. I think I am still comfortable with their absence in my life. The stress they caused me no longer bothers me. I can't miss friends when I would get so aggravated in trying to get together and getting together. I'm glad I'm done but I still feel some regrets - some because I waited so long to take actions.
• This 'gentleman', and I use the term loosely, really pissed me off.
  
  If you have MS, or PTSD after serving in the military, or even breast cancer, this a$$hole thinks we are 'undesirable'. Why? Because he is against having a marijuana dispensary in his neighborhood, which is one of the nicest in Boston.
• My health is may be telling me new things that I am not ready to discuss. Which aggravates me more. Only four appointments this week, plus two PT trips. I'll discuss later, maybe. But I am really aggravated. I am not allowed to have more ailments than I already do.

That's all for now. But you get the idea. I survived Thanksgiving and it actually went very well. Iam now looking at Christmas and hope it doesn't stress me as much again.

Celebrate the Holiday, Without the Cancer Advice

Over on Cure Magazine, Martha Carlson, who is living with metastatic breast cancer, provides a bit of advice on how to enjoy the holiday, even when confronted by the unwanted offers of 'advice' from the 'helpful' friends and family you see at family gatherings. 

Everyone knows this type of people. They think they know more than you do about how to treat your disease, because:

• They read something about it once
• They saw something about it on TV or online
• They are smarter than you and just know these things that your poor brain cells could never have found on your own
• They know someone who had a similar ailment a long time ago and their treatment must be better.
• They are positive alternative medicine will cure you instantly and you should not waste your time on traditional medicine.

After living with metastatic breast cancer for three years, she has this advice:

"Listen first.  I try to remind myself that she believes what she’s saying, thinks it’s something I’ve never heard before, wants to save my life, and, most importantly, doesn’t know any better. I listen first, at least to a few sentences.

Don’t apologize. I do my best to not say “I’m sorry, but…” If I must be blunt, I simply say that I'm following the advice of medical professionals I trust.

Lead with a fact. I’ve got several at my disposal, and which one I use depends on the conversation. 

Follow with a fact. The other common view I hear is about the value of alternative treatments, both to avoid cancer and to treat it. For breast cancer, people who chose alternative treatments were more than five times as likely to die within five years than those who chose conventional treatment.” If that doesn’t give someone pause, nothing will.

Give a little. I will often talk about my own experience with things like meditation, qi gong, exercise and healthy eating to remind the other person that we don't have to argue in stark opposition.

Be kind, not silent. Say something like, “It’s hard to confront illnesses that could end our lives. I try to be both optimistic and realistic with this disease.”

Change the subject. I try to preemptively control the conversation by asking for specifics about his kids, his retirement, his house—anything other than his health or my own.

Hold up a mirror. As is true in dating, most people would rather talk about themselves."

There is a lot more over at Cure Magazine to read. But I think you get the point. I am about to sit down with a large meal for 14 people and will cross my fingers that I don't get stuck on the topic of my health. I don't allow politics at the dinner table because I would rather talk to people about how they are doing than the latest presidential tweet. Maybe I'll just take another bite of food so I can't reply with my mouth full.

Happy Thanksgiving all!

What A Concept!

I met with a pharmacist yesterday or a pharmacologist. It was great. When I had my annual physical with my primary care doctor in September, she was concerned about my medications and interactions.

The pharmacologist went through my entire list of medications - prescription and OTC - and asked why I was taking each one. Then she went through and looked up possible interactions with them. She gave me some advice which I found very helpful.

• Because I am on Prilosec for GERD from a sliding hiatal hernia, I need to take it in the morning, 30 minutes after my thyroid medication and then wait another 30 minutes before eating. I was taking it in the evening.
• I also need to get off prednisone for my RA.I am on a low dose but its not a good idea to stay on it long.  I will stay on it until January when my hopeful new RA medication will kick in and then I can ditch it.
• As my pain management doctor has already suggested, and I really want to do, is to reduce my Lyrica dosage or even get off it. My previous pain management doctor, if I said I had pain, he would say, 'let's increase your dose'. But he never gave me any information why or requested any scans or testing. This is why he is no longer my doctor. I meet with my pain management doctor next week. 
• I also need to change my Calcium with D to calcium citrate not calcium carbonate - something I completely blank out on when in the store.

Also, I am only on about four medications for the side effects of other medications. We had to laugh at that. 

At the end of the appointment I felt very good. A knowledgeable neutral party had looked at my meds and found that I need to be on the meds I take. I need to be careful about some interactions and see if I develop any symptoms and cut down if needed. 

I feel like I should do this every five years or so. I feel that not all doctors look at what other medications I might be on before prescribing something new.  A good experience, for once.

Not A New Ailment

So I had a medical test recently that came back abnormal. It was then repeated. Then I had another test which also came back not so good and now a referral to a new kind of doctor that I have never had before.

My doctor sent me a note over the weekend with a referral for the new department. I asked for a copy of the latest test results and if she had a preferred doctor for me to see.

I'm pissed.
I'm not allowed to have another ailment.
That's it.

F**k.

I'm really pissed.

More when I feel ready to talk about it. I just needed to vent.

Maybe I'm Lying To Myself

I can't tell you how many times I say things like 'I'm fine', 'I didn't sleep well last night', or other creative lies about how I am doing, physically and mentally. Sometimes these are lies, to myself and to those who I am speaking.

Over at The Mighty, which is an awesome website for people with health issues. I only found it recently but immediately signed up for their emails. (That says something in itself because I think I spend more time unsubscribing from email lists than anything else these days.)They say:

"The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities."

I think that criteria might include me. Today's email talked about how people dealing with depression or other mental health challenges by hiding behind some statements about how they really feel. And what they are hiding is that they need help. I do admit to dealing with depression and anxiety. But with my health issues, who wouldn't be depressed and anxious?

So I disagree with their statement that these only apply to those with mental issues but with physical ones as well. I use them all the time. I could add a few such as 'another day not pushing up the daisies'.... Their statements are:

1. “I’m not feeling well.”

2. “Well, I’m alive!”

3. “I didn’t sleep well last night.”

4. “Eh, you know.”

5. “It’s too much.”

6. “I’m exhausted.”

7. “I’m just out of it today.”

8. “I’m fine.”

9. “I’m bored.”

10. “I’m having an ‘off day.’”

11. “I’m hanging in there.”

12. “I’ve been listening to music a lot today.”

13. “I don’t want to be alone.”

14. “I’m all good, don’t worry about it.”

15. “I just can’t today.”

But go read the full article here. And subscribe to The Mighty if you think it might help you too.

Just Because We Can, Doesn't Mean We Should, And Who Pays For It

Back when I was first diagnosed with breast cancer, I first learned about the OncotypeDx genomic test for women with breast cancer. Of course I was not eligible for it. I can't remember why - whether it was because it wasn't my first cancer, or I had a single tiny positive node.

I am never eligible for anything because my health is too complicated to be eligible for anything. I have way too many ailments, previous or current treatments, or something. But I digress.

I watched all these other women get the tests to find out their risk of recurrence. Over the years, genomic testing has expanded from the OncotypeDx test to include a group of available tests. Which I was never eligible for....

These tests can provide helpful information. However, would everyone diagnosed with breast cancer benefit from these tests? Would the benefit of these tests outweigh the costs of them? Insurance companies never want to pay for more testing, even when it might show that a patient can have less treatment in the long run. And we cannot forget the additional stress on the patient for more testing.

A group of oncologists met at the Chemotherapy Foundation Symposium and had a moderated discussion about which breast cancer patients should have genomic test. The result of this discussion was:

"...that not every patient needs to undergo genomic testing.

He gave an example of how, traditionally, older women unfit for chemotherapy do not undergo genetic tests. “I think that this can really apply to any age, 3 cm or below, node-negative disease,” he said. Additionally, low-risk patients — possibly 20% to 30% of patients — most likely do not need to be tested, according to Brufsky.

“You really have to choose,” he said. “I think the payer’s like that, the patient’s like that, and I think we’re a little hesitant sometimes to say to [our patients], ‘Listen, you have a tumor that’s just going to do great, no matter what we do, and you don’t need to be genomically tested.’”"
Just because we can offer these tests, doesn't mean we should test every patient. Even without pushback from insurance companies on costs, more testing is never always beneficial for patients. Or for their emotions and wallets.

On Not Blogging About Breast Cancer

You might have noticed that I haven't been blogging about breast cancer recently. Why? Because my brain has been filled with non-breast cancer issues that take up the entire health section of it.

My brain is full of knee, RA, fibromyalgia, and other health issues. Like why can't I stop taking a couple of medications (a couple of serious conversations are upcoming)? Or why can't my hands and feet hurt less even though I am taking all these meds to make them stop hurting? Or when will my knee be all better and get back to normal? And why did I manage to get so tired yesterday when all I did was go to a yarn store (and spend too much money)?

Anyway, breast cancer doesn't fit in anywhere. I am happy that it doesn't fit.

I think its a sign that I am moving on in some ways in my life. This is a good thing. Breast cancer will never go away in my brain, as thyroid cancer, never does. Cancer never goes away.

But breast cancer will be happy to fill my brain up again at the next little twinge. [Wait, is that a lump I feel?]

I'm just going to focus on my knee for now.

Being Busy

I have not blogged for a couple of days because I have been busy. It was wonderful to be busy.

I have spent so much time by myself over the last six weeks. I have kept myself busy and on some levels, very productive. The only people I have seen with any frequency, other than my husband, are the physical therapists when I go to PT twice a week. I have been starved for the sight of other people. I needed face to face interactions.

Normally I spend a lot of time on my own which I don't mind. But over the course of a week, I would go to the gym three times, go to the grocery store, the library, my parents house, and see a friend or two. But I had six weeks of nothing. A friend drove me to the doctor, my sister and my cousin took me to PT once. I took a cab to PT. I could only go to the grocery or library when my husband was off work.

But this past weekend I had two craft shows. They were really busy. I probably did too much walking and standing on my knee (never mind my back and all the rest of my body which hates me today). But I talked to dozens of people each day. I interacted with the public. And it was wonderful.

I know I will be paying the price for the rest of the week and need lots of rest (and ice packs and heating pads). However my mood is greatly improved. I needed interactions with the outside

Living the life of an isolated unhealthy person, if it is compounded by a period of enforced isolation, can be very stressful. All of a sudden you are encircled by a wall of limitations and restrictions.

So this week I will spend a fair amount of time recovering from two days in the outside world. But I will take myself places - PT, lunch with a friend, the grocery store, library - all on my schedule. I am back into my world where I can pace myself as I want.

Driving Again!

This is a big day. I drove home from breakfast today. It was a whole three miles but my knee felt fine. And I am going to drive myself to my doctor appointments today so my husband doesn't have to. However, he will be drive me this weekend to craft shows because they are longer distances.

All this means, I am just as restricted as I always have been. I will be coming home to lie down regularly.

But I can go to my PT and doctor appointments without hunting for a ride or paying for a cab. And maybe I can get my hair cut next week.

No gym until mid December either. Wah! But this is a start. I am returning to my normal life....

Taking The Good With The Bad

Sometimes, or maybe most of the time, I never get good medical news. I swear, my doctors go off script all too often. So yesterday I got some good news and some bad news.

First the knee doctor said I can start driving. But I need to take it easy. I need to be able to slam on the brakes with my restructured knee. Apparently the surgery did some restructuring but I am not a doctor so I don't really understand it. (All I know is I have lots of knee exercises.) First before driving, I have to practice driving in a big parking lot (like when I first learned to drive) or in our quiet neighborhood to see how it feels. And start driving slowly, not just not getting speeding tickets, but take it easy and work up to driving long distances. My husband was with me so he heard it all and will keep me restricted (maybe I should have left him in the waiting room).

In addition, I don't have to wear the awful, uncomfortable brace any more. I have graduated to the little soft brace which has little metal hinges and gives support. But I still need to be careful with my knee. I can't stand on it for long periods of time. I can't bend it more than 90 degrees, except in PT.

I can't go back to the gym until mid to late December. I should continue PT for at least the end of the year. And I need to go back to the doctor in two months.

After getting all that wonderful news at the doctor's office, we headed down to the blood lab. When we checked in they told us there was a 40 minute wait. But by some miracle we only waited 20 minutes. Today I have a nasty bruise from where they took blood - that happens sometimes.

This morning I got my blood test results. I know I am going to get calls from two doctors because some of them are way different than before. This means medication changes and doctor appointments.... Oh, joy. (No, nothing major but its just concerning when they change too much.)

So it was a good and bad day. But we went to the grocery store so we now have food to eat. I'll just wait to hear from my doctors.

Today Is The Big Day

I have been waiting for this day for nearly five weeks. This is the day I go see my surgeon for a follow up. I have my fingers crossed that all is well and I am given the green light.... to drive that is.

I have not been able to drive since October 5, the date of my surgery. Originally I expected that my surgery would be a minor arthroscopic clean up of my knee and I would be all healed by now. But now, during surgery they found what they really needed to do was to repair my meniscus so I don't lose any more stability in my right knee (I need all the stability I can get as my left knee has a torn ACL and likes to give way sometimes).

So they did the right thing (and I don't regret this at all) and repaired my knee. When I woke up they told me its four to five months until I am healed. At my first follow up, ten days after surgery, I asked if I could drive and was told not yet.

Today is my five week (minus one day) follow up and I have had three weeks of PT so far, so I hope this is the big day and I am allowed to drive.

If I am not given the green light to drive, I will probably cry. If not in the doctor's office but later on. Its so restrictive and depressing to be stuck at home. Walter, my husband, works all day. I have been begging drives off people, taking cabs, etc.

But I have over due library books, I can't go to the grocery store, I can't get together with friends. I am at home all day from 7am to 5pm, five days a week. To top it off, I have had a cold since last Thursday. Today I am finally feeling normal, after 14 hours of sleep. And I have been eating too much left over Halloween candy.

Its not that I want to go out all day, every day. I just want to get out of the house and see other people. Its I just want my life back. I wouldn't mind going to the gym but I am sure that's another few weeks.

So cross your fingers for me. Or send me kleenex.

One Last Story on How Life Sucks After Breast Cancer

Okay, maybe I have been in a rut because I have been stuck at home after knee surgery because I can't drive. Or maybe because I have a cold that I am obsessing on crappy lives after cancer. Or maybe the internet gods had their stars align and all these stories ended up on my laptop in the same time period. But I hope this will be the last one for a while.

Here's the story of a young woman who lost both her husband and her sister because of her lengthy cancer treatment.

"“The reality is that probably four out of seven days I’m in bed,” explains the 39-year-old, who lives with her mother at Bundall.

“I’ve had my left hip replaced. My right hip is headed the same way. The pain is excruciating and I’m on some heavy duty pain relief. My lungs have been affected. I had my gall bladder removed last year. I’ve developed cataracts."

Kate Carlyle is a former radio personality from Brisbane Australia. In the past eight years she has gone through two breast cancer diagnoses and a leukemia diagnosis which required a bone marrow transplant. The bone marrow transplant is what cost her a sister - her sister could donate but became pregnant and couldn't donate at the last minute - causing a long term rift which continues today. She was saved by an anonymous European donor.

The stress of her cancer roller coaster cost her her husband. She is not the first to lose a spouse over the stress of cancer diagnosis. But it just makes things suckier. During cancer treatment is you are not at your best to deal with marital issues.

So yes, life after cancer can be very sucky. They don't tell you all this. Yes you can get divorced or have a long term rift with a sibling without involving cancer treatment. But when you are coping with a significant health issue you don't need the other crap.

So as Kate says in the end: "“I love being alive and if that means I have to battle through at times, so be it.”"

Being alive is the most important thing. It is the goal of any cancer treatment - to still be here for all the little things in life - birthdays, anniversaries, marriages, friends, family, change of seasons, butterflies,...

More on Life After Breast Cancer

Beth Caldwell is another story about life after breast cancer. But the really sad kind. She was diagnosed with breast cancer at age 37, which is three years before she would have gotten a mammogram. Unfortunately she had a huge factor going against her with her diagnosis. She was diagnosed at stage IV.

This is a very bad thing. This is not the good painted pink breast cancer. This is the really bad kind. This is the cancer that something like 7% (or so, I can't remember the exact number) diagnosis that women (and men) face.

When you are diagnosed at stage IV, you are already past the point where everyone else is at and where everyone else is trying not to get to. Their treatment is trying to keep them from getting to Stage IV. Beth didn't have that luck.

Now Beth is gone. She passed away on All Souls Day, November 2, 2017, 3.5 years after diagnosis. That is a very short time. If I can do math, she was just over 40 years old. She left a husband and two children.

Before her diagnosis she was an attorney. She left her work and became a mom and a cancer patient. That's a sucky life. The cancer patient part. Not the mom part.

I don't claim to know Beth. I have read her blog a few times.... but not every update, but most of them. But I feel for her. I can relate.

So there can be millions of women with pink boas walking and running their events who say they are lucky to be 'survivors'. But the sad side of breast cancer is people like Beth. She didn't make it more than a few years.

You ask how breast cancer sucks? This is the ultimate suck. I hate breast cancer.

Breast Cancer Changed Me Too

I like Joan Lunden. I mean I like what I saw of her on TV. She was very professional and did a good job on the air. I am not sure I would have 'volunteered' to have a mammogram on television, even if it was to raise awareness of breast cancer screening.

Now, three years after her diagnosis, she is through with treatment and says that having breast cancer changed her. She has started a website to educate women about the benefits of early detection.

Then another woman, much younger, Yolanda Jenkins, has also been diagnosed with breast cancer. She has created a platform to encourage young women to get checked and wants to get the age for mammograms lowered so younger women have access to this critical tool.

These two women make me think should I be doing something different? I mean I have a blog that's about me. I don't run around educating people about cancer. I know I talk about breast cancer and other cancers but I don't educate or advocate or anything... Should I be doing something different? I am not sure I could.

Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Blatant Discrimination

I recently learned some surprising discrimination. A local committee part of the NHS in the UK has decided to institute what I call blatant discrimination.

"...one local health committee in the UK has announced a controversial policy "to support patients whose health is at risk from smoking or being very overweight."

For an indefinite amount of time, it plans to ban access to routine, or non-urgent, surgery under the National Health Service until patients "improve their health," the policy states, claiming that "exceptional clinical circumstances (will) be taken into account on a case-by-case basis."

The decision comes from the clinical commissioning group (known as a CCG) for the county of Hertfordshire, which has population of more than 1.1. million.

The time frame for improving health is set at nine months for the obese in particular; those with a body mass index over 40 must reduce the number by 15% over that time period, and those with a BMI over 30 are given a target of 10%.

The target for smokers is eight weeks or more without a cigarette -- with a breath test to prove it."

I could not believe this. Some 'holier than thou' sorts have clearly decided that they are better than those evil people who are overweight or smoke.

Look I was a smoker for far too many years to count. Its not an easy habit to quit. Smoking has been called more difficult to quit than heroin. It takes many people months or years and many tries to quit. Eight weeks to quit is a very tight deadline. And a breath test? Seriously? Like a breathalyzer?

I find the obesity one even more offensive. Is it my fault that I have managed to gain multiple pounds (so many that I find appalling) over the past twelve years? Is it because I have so many ailments? Is it because I am on so many medications with the side effect of 'may cause weight gain'? Is it because I like to make a nice dinner for my husband every night? 

Can I lose weight? With great difficulty. If I wasn't recovering from knee surgery I would regularly exercise. But that wasn't making me much thinner. Its very difficult for me to lose weight. And I am not the only person who has problems losing weight. There are many people with medical problems, metabolism issues, and more that would have to eat only lettuce leaves to lose weight. Some people just have a predisposition to being heavy.

Finally, the BMI is not a perfect measurement. There are many who disagree with it.

I cannot believe in this day and age, people in medical professions would blatantly discriminate against people who are fighting hard issues - quitting smoking or losing weight. And then denying them medical care based on these same issues. Well, at least I am not the only person who finds these policies horrible:

"The new policies came under immediate attack from experts and interest groups.

"Singling out patients in this way goes against the principles of the NHS," said Ian Eardley, senior vice president at the Royal College of Surgeons in the UK. "This goes against clinical guidance and leaves patients waiting long periods of time in pain and discomfort. It can even lead to worse outcomes following surgery in some cases."

The conversation has been going for some time, experts agree, but the question is the ethics -- and whether it would even work.

"Rationing treatment on the basis of unhealthy behaviors betrays an extraordinary naivety about what drives those behaviors," Robert West, professor of health psychology at the UCL Research Department of Epidemiology and Public Health, wrote in an email."

I am not alone but these are just blatant discrimination.

Happy Halloween!

Today is Halloween. But we will not have trick or treaters until Friday night. Significant portions of the town do not have power and there are still trees downed all over the place.

We had a little storm on Sunday night with wind gusts here to around 50 mph but other places on the coast in the 80-90 mph. A little hurricane came up the east coast and joined up with another front moving east across the country. Their little party was slammed by a Canadian cold front which turned into a massive storm. We got 5" (just think if that was snow) of rain. So no trick or treating for safety's sake for a few days. (But I think all the smart kids are going to get their parents to take them to another town tonight and then back home on Friday so they can trick or treat twice.)

But I digress. Years ago, all my friends and I would dress up in our costumes and go to parties for Halloween. That was possible because we were in our twenties and had the ability to stay up after 10 pm and didn't really care how we looked like. And it was all about having fun.

One year, a friend showed up in regular clothes. We all asked her what her costume was. She said she was a serial killer 'because they looked like everyone else'.

This now makes me think. When you have cancer, you usually pretty much look like yourself and get around, until your cancer progresses and life starts to really suck because it includes a deadline.

So along that thinking, I could dress up as a cancer patient and say 'because we look like everyone else'. Or I could dress up as a rheumatoid arthritis/fibromyalgia patient for the same reason. (Or because my leg is in a big brace, I could dress up as Captain Hook with a peg leg... But that might be too much work.)

My point is that we can easily overlook people because their diseases do not show. We may have some very significant ailments that greatly impact our lives but they do not show to the rest of the world. We are just regular people with health issues. Do we need special treatment? Maybe, maybe not, or maybe just a handicapped parking space. Just remember that appearances can be deceiving and we can be hiding a lot under our normal appearances.

Frustrated

I am very frustrated right now. I am incredibly limited by my health normally and now I add in my knee that I am not supposed to be fully weight bearing or bend more than 90 degrees and the fact that I can't drive. Yesterday I really overdid things with my knee.

I am not supposed to bend my knee more than 90 degrees. I have a big (ugly, uncomfortable, awkward) brace to keep my leg straight that I no longer have to wear at home. I have smaller soft braces that are supposed to keep my knee straight but are much more comfortable to wear. It does make it easier on me. But doesn't protect my knee quite as much.

Yesterday morning we had another 'cat brought in the not quite dead chipmunk' which is now living in the baseboards of our dining room between periodic bouts of cat battles. At its first arrival, we waged an all out war on the thing, assisting the mighty 'Boots', backed up by soldier 'Evil Kitty' in his determination to dispose of it.

At one point during the battle when I was holding up table cloths and floor length curtains, for some stupidass reason, I bent my knee all the way. It did not instantly cause pain. But it hurts today. I will need to admit my lapse to the PT people today.

I need take it easy again today. I have to stay off my feet. I informed my family last night. We still have a house guest and she will have to be on her own because I just can't do anything.

So my frustration is:

• Can't drive
• Possible reinjury of knee
• Unable to be a good hostess
• The house looks like crap
• Pain
• Stuck at home

Finally, we also had a huge storm last night (typical New England - a tiny hurricane named Phillippe came up the coast and had a party with a Canadian cold front and another west moving front on top of New England). The are trees and branches down all over and many people without power. I will get to sit inside and look at the debris everywhere. More frustration. Grrr.....

I Did It Again

Yes, I did it again. I over did things. I have to recover by spending a day in bed. I have lots of yarn to knit. I have an ice pack for my knee. I did some of my exercises. And I do plan to get up and take a shower eventually. But I have no plans to do much else today.

We have a house guest again, one of my cousins. Yesterday we did what both of us consider to be fun. We went to an estate sale which had some craft materials and the New England Quilt Museum (worth a stop if you are near). My cousin quilts and I am a craft junkie who is about to add quilting to my repertoire. It was very nice to get out of the house and do something fun. I have been trapped at home too much as I can't drive for another 12 days.

By 3 pm I was exhausted. My left foot really hurt. I am not really weight bearing on my right leg, or weight bearing as tolerated. We had explored the museum - right now embroidered and embellished quilts going back to the early 19th century - and then stopped by their library where they were selling quilting books. I got a few so I can learn how to assemble the quilt that is in my brain (but not yet created).

We got back home around 330 and I had to lie down for close to 1.5 hours before heading out for dinner. I was a tiny bit tired by the time we got home last night. After 11 hours sleep, I definitely need to stay off my feet for the balance of today. Of course its the first nice, warm, sunny day out there. But I will stay in bed until we head out for dinner again tonight.

That's the thing with house guests, we end up going out to eat a lot. Its fattening. And I can't get any exercise.

I am having a lazy day as a result of yesterday. I just took a shower. I ate some breakfast and made a dinner reservation... I think I need to nap.

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....

Is There Less Pinkification This Year

A week or so ago, I watched an NFL game and decided that something was wrong. It was october and players did not have pink shoes and pink towels. Then I have seen a lot fewer pink events. I haven't been out much because of my stupid knee, but I just feel like there is less pink around.

This makes me happy. I would love to go back to the month formerly known as October and see orange and brown again, lots of carved pumpkins and zero pink ribbons. I don't need to have pink everything. And this is the first October in many years that it has not been covered in pink.

What is wrong? Is the country burned out of pink stuff as a result of the Komen blow up a few years back? Does the media have other things to focus on besides pink ribbon events - like the latest fashion styles of the first lady and her husband's rude tweets?

Maybe that pink thing is just so embedded into society that we do not notice special events any more.

I am happy that there is less pink... I need to go carve some pumpkins.

I Need A Day In Bed

I am exhausted. I have been too busy. I can't keep up with my last few days.

My husband came home from his business trip on Thursday night late. I stayed up to wait for him so I didn't get enough sleep. Friday he took the day off and we went to the grocery store, the library, PT, and more. Friday night my brother and his girlfriend showed up - after I went to bed so I got up and talked to them for a bit. Saturday I had a craft show and we left the house at 7am. I wasn't home until 530 and then we went to my parents for dinner. Sunday I had a craft show and we left the house at 8am. I got home at 5pm. Then we went out to dinner with my family. This morning my husband went to work and I had breakfast with my brother and his girlfriend before they left around 9am.

Now I have a plan for the day:

• Lie in bed for most of the day
• Do my PT exercises at least twice today so I can tell them truthfully I have been doing the when I go back tomorrow afternoon.
• Keep my feet up for most of the day.
• Catch up on a little bit of paperwork after my craft show
• Talk to my attorney about my upcoming disability hearing.
• Not eat any more cannolis until Walter gets home tonight.

I am physically exhausted from being at the craft shows and on my feet too much.So my feet hurt from my RA. 

The problem is I should be tidying up for the cleaning people who are coming tomorrow. I think that won't happen. I think I will do the basics tomorrow morning and go with that. I just don't have the energy.

And I have to prepare for upcoming house guests. Ether three or four cousins will be visiting between now and Thanksgiving and staying here at different times. Well, two might come together. But that is a lot of house guests. I'll plan on lots of naps.

Being A Bad Patient Vs. Being A Rude Patient

There is a vast difference from being a bad patient as opposed to being a rude patient. Yes I know often when we go to the doctor we are not feeling are best and are probably prone to over reactions and stress. But there is no reason to be rude.

So I was appalled when I read this article on the amount of the abuse faced by doctors. Medical doctors have studied for many years. They know what they are doing. They are professionals who are trained to take care of people. They are human beings, just like you or me. So there is no reason to be rude to them.

"A wide-ranging survey of more than 800 U.S. physicians, conducted by WebMDand Medscape in collaboration with STAT, found that 59 percent had heard offensive remarks about a personal characteristic in the past five years — chiefly about a doctor’s youthfulness, gender, race, or ethnicity. As a result, 47 percent had a patient request a different doctor, or ask to be referred to a clinician other than the one their physician selected.

Fourteen percent said they had experienced situations in which the patient complained, in writing, about the doctor’s personal characteristics.

African-American and Asian-American physicians were more likely to face such attacks, and female doctors were more often the victims of bias than males. But patients found targets in every imaginable corner: 12 percent of physicians, for instance, endured offensive remarks about their weight."

Does it really matter about a doctor's age, weight, gender, race or ethnicity when they are treating you? I do realize that some people prefer a male or female doctor for certain exams but there is no good reason to be rude to them about any of those demographics.

And certainly swearing or using derogatory or racist terms when referring to the doctors is just plain wrong. What does it matter what they weigh? I know all my doctors seem to be toothpicks, at that perfect BMI, and I feel fat next to them. 

When I first saw the title to this article,  I assume it was about the abuse nurses face on a daily basis - where they are hit, bit, pushed, shoved and more. This is another significant example about how a profession is being abused by the rest of us. 

A significant part of this issue is that many doctors have to resources to support them when faced by this kind of treatment from patients. What are they supposed to do, bite their tongue and keep treating them? Verbal abuse can leave emotional bruises where no one can see them but they still deserve help. And its just sad if hospitals need to provide resources to protect the people they hired to take care of others.

There is no room in the world for this kind of treatment. No one deserves this kind of treatment, especially someone who has studied for many years and wants to take care of people.