Thursday, March 22, 2018

That Drama Queen Friend

And this can apply to males as well. But we all have the drama queen friend who spends hours/days/weeks/months agonizing over their latest ailment - a bunion, or a boil, or a blister, or whatever they have.

Maybe they got new shoes that caused their feet to develop problems or they tripped and slightly skinned their knee (and ruined a pair of brand new tights). They are in agony with every step. There was so much blood. And it still hurts three days later. I am not trying to minimize real injuries or ailments but just the ones who act like they are on an episode of the "Kardashians" or "Jersey Shore" with every incident.

I know people like this. I think we all do. In comparison, those of us with chronic ailments start to wonder if we are hypochondriacs because we are constantly at the doctor's office or on the phone with them because of our latest issue.

I read this article over on RheumatoidArthritis.Net on the influence of these friends on our own thoughts about ourselves. And it made me think. I often wonder if I am getting to be such a hypochondriac because I do spend so much time at the doctors.

I do know people who are basically healthy. One woman I used to work with scheduled all her doctor appointments in one week each year to get them over with and she never went to the doctor any other time. (To be honest, I am jealous.) But I know a few drama queens who make me feel like a hypochondriac. They may go to the doctor a lot but its not for anything chronic or potentially terminal.

But I go to the doctor all the time. I think I would prefer to be a drama queen than a hypochondriac.

Sunday, March 18, 2018

Pancreatic Cancer Sucks

I haven't been blogging recently because I have been emotionally stressed. It may take me a while longer to get back to it. My father, who was diagnosed with pancreatic cancer last May, had metastases by August 1, and was in chemo until Feb 13, died on Tuesday February 27.

Since his diagnosis with Waldenstrom's lymphoma back in 2013, I had become his oncology interpreter/assistant. I went to the important appointments and answered his questions that the doctor's don't want to answer.

Due to vein damage from chemo for his lymphoma he needed a port. When he did finally get a port, his first question was 'when do I get it out?' The doctors and nurses would not answer that question. So I told him 'once you don't need it for six months or so, you can discuss taking it out.'

I also translated back to his oncologist when asked about pain levels and he replied 'just a little over here'. I would tell the oncologist that he has had several instances of extreme pain. Once he told my sister that that the pain that caused tears in his eyes was only a 5. Later he corrected himself to say it was a '10'.

Another big step in his cancer treatment was weaning him off Wikipedia for cancer research. I had to explain to him several times that Wikipedia is not a good place to do research and that the American Cancer Society was the place to start. This took several months of 'discussion'.

Aside from losing my father, the sad part is that my medical history is what enabled me to be his oncology interpreter/assistant. For the last 8 years of his life, anytime he was going to have a new procedure, test, or other medical misadventure, he would call me up and want to know if I had had it and what was it like.

Until his pancreatic cancer metastasized, he would introduce me to his doctors as "his daughter with more ailments than him." We would both make jokes through his appointments to the point that the schedulers sometimes hinted that we might be a bit crazy. Humor got us through a lot of this but now his sense of humor is gone with him.

We will miss him and we will be very sad for a while. But it was nice I could help him decipher his diagnosis and appointments as much as I could.

Sunday, March 11, 2018


You may know I live outside Boston, MA. We had two 'little' snow storms in a row. The news is that we lost power from 10pm Wednesday until 7pm Saturday. Nearly 70 hours of now power makes one rethink everything.

Yes we have nearly 12 hours of daylight each day. But it seemed to get dark very early each day. The indoor temperature reached 46 degrees yesterday. On the plus side we were relatively well equipped to lose power. We have a gas stove (hot food), gas hot water heater (hot showers), and a fireplace (some warmth). We also have lots of flashlights and a few lanterns and one tiny solar phone charger. The two cats were very snuggly (and bed hogging). But nearly three full days without power is hard.

The cause of this power outage was the storm combined with the very wooded neighborhood. There were probably dozens of trees down blocking roads. There were entire telephone poles down across roads that needed to be replaced. There was a big hanging branch sitting on the wires in front of our house. Our neighbors had a tree through their roof. There were many line crews, tree crews, and electrical repair from as far away as Tennessee and Quebec.

It was stressful but it made me reprioritize everything. I was not interested in my health. I did not care about my health during that time. I was more concerned with being cold, staying warm, and hoping we did not lose the contents of both the refrigerator and freezer. (I did really miss my heating pad for my back.)

Actually, I enjoyed the part of refocusing myself. My health did not dominate my life. I allowed myself not to think about all my health crap. It was a nice break. It taught me that I need to focus on other things besides my health. Something I need to do more often.

Now that the heat is back on, the cats don't want to snuggle was much. I could get back to blogging, email, etc. Including my health.

Wednesday, March 7, 2018

Apps Aren't Helpful

I found an article in Cure Magazine (if you have cancer and aren't a subscriber, you are missing out) on this 'cool' new app for people living with cancer, called LivingWith. Its supposed to help those of us with cancer in dealing with their disease and its treatment.

'With the number of moving parts associated with a cancer diagnosis and its treatments, patients now have a “one stop shop” to help them navigate their journey.'

An app? Seriously? How can an app do that? I am skeptical to start. First, are you sick and dealing with your cancer and you need to find an app and start using it to communicate with your friends and family. Also, do they want to use an app too? And are they online all the time so they would see requests and updates. 

'The app allows patients to create a tight-knit circle of friends and families to stay connected and easily update loved ones; send requests to people asking for help with daily tasks; track mood, pain and sleep; and keep track of questions or important information for oncology team appointments.

And its all connected to a website. And what does this website do for the patient? Well it can help the caregiver.

Patients, caregivers and health care teams can download the app for free, using the Apple or Google Play stores, or by visiting the This Is Living With Cancer site – which is the main hub for the program designed to share inspirational stories and offer patients and their caregivers an online tool to help.

Oh, and they can send you selected, or their fancy word 'curated' information. This means they are mining the information they send you and then selecting what to send you. 

“They are able to self-identify their tumor type and then start getting some curated information over time,” said Basavaiah. “It is not just for the patients. It is for the whole team around them: the health team, caregivers, their support network.”'

Did you see that the app wants to connect with 'the health team'? Is your oncologist going to sign up to be on the app with you? Do they seriously think medical professionals have time to check on their patients through an app?

I even downloaded the app to try it out. The first thing it wants is for you to connect with other people. So you need to get your friends and family on it before it can help you. 

I did go to their website to see what was on it, other than pushing the app. I went to the Cancer Specific section and selected breast cancer. They only had links to, American Cancer Society, and Susan B Komen. That wasn't very helpful. It is depending on other sites to provide the information and doesn't seem to 'curate' an yof it. You still need to dig through those sites for information. And it only had information on nine types of cancer.

I also went to the news portion of their site and it had articles on nutrition and coping with cancer treatment - the fun stuff like nausea, getting enough nutrition when you can't keep anything down, etc. But none of the articles I read were very detailed or provided much solid information.

So I tried it. I was on their website. And I can say I would not bother with it at all. Simply not worth the effort. I think that even if you are someone who is online all the time and just diagnosed with cancer, I am not sure it would be that helpful at all. Nothing seemed to be focused to young people with cancer - who are the most likely to be users of an app.

So my rating is one star out of a possible five. I wouldn't suggest recommending it to anyone. 

Tuesday, March 6, 2018

Hidden Scars from Breast Cancer

Yes there are lots of hidden scars in breast cancer. I have discussed the emotional side a lot - which boils down to PTSD for some. But there is also the physical side. Every time you look at your body and see your cancer scars, you are reminded of  your cancer misadventure. Its only a scar that will fade over time but its still there.
Back in 1984, I found my first breast lump. Due to the limitations of surgery at the time, I had to have an excisional biopsy. And because of my medical history (three years after thyroid cancer) they had to be sure. (And if you are trying to calculate my age, I am still only 37). So I had a lumpectomy (aka excisional biopsy). And it was benign which was good. But it left me with a scar. A big fat red scar.

After surgery, I realized I had a bigger problem than normal in bathing suit shopping. I had this giant scar, 2" long, on the outside of my left breast that ran horizontally across toward my armpit. Bathing suit shopping is bad enough with the unflattering fluorescent lighting, holding your stomach in while you are trying to decide if it will fit when you really do lose those 10 pounds by June. Then you have to add in - will my scar show?

Seriously, it took me a good 10 years for the scar to fade and for me to stop worrying if  someone might see it sticking out the side of my bathing suit. It was a bit of vanity for me. But I already had a scar on my neck from thyroid cancer surgery that could not be covered up in a bathing suit. I really didn't need a second visible scar.

Now surgery is catching up to my bit of vanity. At Beth Israel Deaconess Medical Center in Boston, they have pioneered breast cancer surgery with hidden scars.

"Traditionally, the procedure would place an incision directly over the tumor, making it very visible. But Beth Israel Deaconness Medical Center now offers another option.

"The more we can make the scar smaller, or put it in a place that can't be seen, the better for the patient," said Dr. Ted James, chief of breast surgical oncology at the hospital.

He started offering hidden scar surgery here last year.

"What the hidden scar surgery tries to do is to place the incision in a less obvious or visible location. Under the breast is one location. You can also make it around the areola, that's another place where you can hide a scar, and if the incision is very high on the outer portion, we've actually gone through the armpit," James said."

"Hidden scar surgery can take a bit longer than traditional procedures, but recovery time is about the same."

A lot of progress has been made in treatment of breast and other cancers but I really do like the idea of taking into account the fact that the surgical scars can be a less prominent reminder of our cancers each time we look at our bodies.

Monday, March 5, 2018

Looking for Clues in Art

We think of art, whether modern, post modern, classical, or even neolithic, as a way to express the painter's thoughts on their surroundings. It doesn't matter if the scene is posed, still life, mythical or something else. The artist take that and makes their artwork a memory of their surroundings to last for centuries.

Recently researchers looking at breast cancer iconograpy through history found two portraits from the early 16th century showing late stage breast cancer.

"Signs of breast cancer can clearly be seen in "The Night", painted by Michele di Rodolfo del Ghirlandaio, and "The Allegory of Fortitude", depicted by Maso di San Friano."

If you look at the close ups of these two paintings in the Forbes article you can see them clearly. In addition it is noted that the Renaissance was a time of medical advancement so perhaps this was a way of showing the realities of life. What have other artists done? Intentionally omitted body defects so as not to show signs of disease?

But I also would not want to be the patients in the photos which show necrotizing tissue.

Sunday, March 4, 2018

Because We Get It

I have been going to the same gym probably for eight years or so. I can't remember how long, nor to ask if they can tell me sometime while I am there. But its a great place for me and my ailments. It is also full of all kinds of other 'not-quite-healthy' people. O2 tanks, rollators, walkers, canes, and other body supports are not uncommon.

I have met many people there who I chit chat with while doing cardio and between resistance exercises. Its a very dedicated group who goes to the gym because of the extra attention we get for all our ailments. We get to know each other and notice when someone is not around for a while - is it surgery, vacation, or, or, or.... We breathe a silent sigh relief when we see people return.

There is one woman who I noticed shortly after she joined. Why did I notice here? She has that lovely chemo hair style, very sparse in many places on her head, and chemo pallor. She seems to have many friends who she chats with there and appears to know them outside of the gym.

We chat from time to time when we end up next to each other on the seated bikes. I know I have talked cancer with her regularly - because its something we have in common.

I hadn't talked to her since last fall sometime - before my knee surgery - until last week. We actually had a nice chat and caught up. She has been having some new side effects from her chemo and plans to talk to her oncologist at her next infusion to see if something can be done. She has been treated for lymphoma for the past ten years and this is her first real problem with neuropathy.

At the end of our conversation she said something to me about the fact that I am pretty much the only one there who 'gets it'.

Its that crazy cancer bond thing. But I don't even know her name. That doesn't matter because we both get it.

Friday, March 2, 2018

More Annoyance

I try to eat and drink healthy. I try to avoid premade 'chemical' food and use whole ingredients, meaning real, unprocessed food. In the mornings it may not be wise to get between me and my first cup of coffee. Later in the day, I like my herbal tea for its flavors and lack of caffeine anytime after 10 am. My husband makes fun of all the different kinds of herbal teas I have. I just like to be able to choose which one I am in the mood for.

I also subscribe to tips from WebMD to help keep me up on how to be healthier, what to do or eat or what not to. Usually I find this helpful.

But not yesterday.

I got an email on good and bad herbal teas. I know there are some herbs in teas that can interact with medications. I made a point of reading the information each of the herbal teas and stopped at Rooibos because I don't know much about it and I know I have some. This is what I learned:

"It comes from a plant native to South Africa, and the drink there is called redbush tea. It’s caffeine-free and is often touted for its antioxidants. Some researchers believe, based on studies done on animals, that this herb may boost the immune system and help prevent cancer. They are also looking into whether it can benefit your heart and fight diabetes. Check with your doctor before you use it if you have a hormone-sensitive cancer or you’re on chemotherapy."

Did you read that last sentence? Hormone sensitive cancer? That's me. Now I have to sort through all my teas to pull out any with rooibos. 

This just annoys me. One more thing that just aggravates me. Can't I just be a person who had cancer instead of having to check labels on herbal teas, and everything else for soy? Annoyance, annoyance, annoyance.

Sunday, February 25, 2018

Cancer Not As Scary?

How scary is a breast cancer, or any other type of cancer diagnosis these days? This article, Thanks to advances, diagnosis of breast cancer isn’t as frightening as it was, claims it's not as scary as it used to be due to advances in diagnosis and treatment. However I beg to disagree. That is not the only reason. And societally, we have not changed enough.

Do you remember in the 1970s and earlier when people didn't talk about cancer? No, they whispered about it. So-and-so has cancer.... when's the funeral? Nice sequence there. But that is how life was. No one talked about cancer because it was a death sentence.  No one really knew anyone who had cancer and survived. Now as adults, we probably know people who have had cancer and didn't die. And are actually they are thriving.

Yes there have been lots of advances since the 1950s when the first chemotherapy became available. But it was not broadly available and sometimes the 'cure' was worse than the 'disease' due to the side effects. Now, we have targeted therapies and immunotherapy is coming into its own. But we don't yet have a cure.

But as a cancer person (when does one end being a cancer patient? When one is no longer here.) it is still very scary to be diagnosed with cancer. Just because it is easier to diagnose and treat now, it doesn't mean that it still isn't scary as hell. Cancer kills a lot of people. There is a lot that is not known about cancer and its diagnosis and treatment. More is learned every day. And the proverbial cancer cure is not yet available.

I am not sure if saying a breast cancer diagnosis is not as scary yet is premature or not. It probably is. Because most of us grew up with cancer as a whisper and not as a dinner table conversation. And more generations successfully live through cancer, it will still be very scary. If you choose to disagree, wait until you are diagnosed.

Thursday, February 22, 2018

What If The Pathologist Is Wrong?

And they won't review all the tests. This is a two part misadventure.

First I was horrified by this first story where two women were found to have been misdiagnosed by a pathologist at a hospital in Ireland. Their original breast cancer diagnoses were incorrect. One woman was diagnosed with DCIS in 2010 and had a mastectomy. Based on the original pathology she was not required to have any additional treatment. In 2012, to the surprise of her and her doctor, her cancer came back.

"Her original 2010 biopsy had shown invasive cancer but this had been missed.

The hospital said this was a mistake that any pathologist could have made and a review of 39 of the specialist's cases from 2010 was conducted.

The review found that of nine DCIS cases Alison and another woman were misdiagnosed."
It is nice to know what they did review some of the test results to find the ten cases. But wouldn't you think those ten cases were the proverbial smoking gun and want to review more cases, not just the ones from 2010? They only made errors during one year?

No, apparently not.

Although it was recommended to review all the pathologist's breast cancer cases, the hospital decided it was not needed.

"A review of the breast cancer test results for around 270 patients has been ruled out despite the doctor involved in their care misdiagnosing two other women with the disease.

St James's Hospital, in Dublin, which has the country's largest cancer centre, has refused to investigate the tests of the women, despite the call being made to Health Minister Simon Harris.

The decision follows revelations a former locum pathologist at the hospital misdiagnosed the type of cancer Dubliner Alison McCormack had in 2010, finding she had a form known as ductal carcinoma in situ (DCIS), which is not invasive."

[HSE = Health Service Executive in Ireland and provides all of Ireland's public health services in hospitals and communities across the country.]

"“The review highlighted that identification of subtle foci of invasive carcinoma within in situ carcinoma is a difficult diagnostic area that challenged both the individual pathologist and the wider pathologist group.

“The pathology conclusion is that this error could equally have been made by any other competent pathologist and does not represent incompetency on the part of the individual pathologist or a departmental systems failure.

“On the basis of the contents of the report it is the view of St. James’s Hospital that any further review of the remainder of the pathologist’s work is not warranted."

Um, if its an error that could be made by any pathologist, I am not sure I would want any of their pathologists, looking at my tests. And when the error was discovered, after the patient was rediagnosed, the hospital didn't even rush to tell her and waited until a meeting months later.

St James is a big teaching hospital associated with Trinity University and, I believe, the biggest hospital in Dublin. But if I knew this, I wouldn't go to that hospital unless absolutely necessary and want every test done, redone elsewhere. 

Tuesday, February 20, 2018

How The Post Cancer Brain Works

I have lots of aches and pain. This is a proven fact. You can ask any of my doctors. And I am also a klutz. And I have the battle scars to prove it.

Last week, I tripped over my father's wheelchair in the waiting room of the chemotherapy department. How embarrassing. In front of maybe 40 people waiting for their appointments. They all noticed.

This is what happened. We arrived at the hospital and my father grabbed a wheelchair. He has a bad leg so he pushes a wheelchair around instead of using a cane or walker. It's easier for him. He checked in for his appointment and we sat down to wait for him to be called. He parked the wheelchair sideways in front of the chair between us.

Then we both noticed a new quilt hanging on the wall. It's a lovely picture of lighthouse. My father suggested I take a picture of it for my cousin who quilts (as someone else was already photographing it). I got up from my seat, looking at the quilt on the wall. The next thing I knew, I was on my hands and knees in the middle of the floor.

Everyone around me gasped as they witnessed my extreme klutziness. I stood up and said I was fine. I didn't think I had damaged anything.

Then a nurse stopped by and asked if I was okay. I said I was. A second nurse stopped by and asked me to walk with her for a minute and wanted to make sure I was fine. She asked if I hit my head. I said no, just my fat butt. Finally, when my father was getting his port flushed, I think my father made a joke about me tripping over wheelchairs. His chemo nurse asked if I was the one causing all the trouble in the waiting room. I said my fat butt landed on the wheelchair but I was fine. My 'padding' saved me from any injury. Precisely I have a bruise on the back of my left thigh to show my landing point.

Why am I telling you this story? (Patience please.)

Fast forward a week: I have had a horrible cold (not as a result of my flying leap over a wheelchair). I have been spending a lot of time in bed as a result of that cold. It now seems to be getting better but I am still in hiding in case I have germs. The problem is that I seem to be having new problems with my right hip as it wraps around towards my spine. I really do not think I landed on it.

But I have had some pretty significant pain from it if I am sitting or standing for any length of time. And if I have pain that gets past my pain patch, its bad. I have been managing it by staying in bed. Yesterday I had to ice my new pain for a good 20 minutes to get it back to a reasonable level after weaving for a while - sitting in a chair.

I have decided to call my doctor because it is getting worse, not better. My cold is much better. But the pain is worse.

Finally, I am at the point of how the post cancer brain works: Is it a bruise I don't remember getting in my flying leap over the wheelchair? Or is it a BAD thing, like cancer cooties? The logic side of my brain says 'its a bruise'. The cancer side of my brain says 'its cancer and I am going to die'.

Anyone else do this?

Sunday, February 18, 2018

A Good Book Ruined By A Bit of Reality

I am a bookworm. As a child I always wanted to go to the library and didn't mind that if I read my newly selected books on the way home I might start to be a bit woozy from the wiggly New England roads. (Highways are much better for car reading.)

In times of stress (read 'medical disasters' among other things) I often turn to books as my personal form of avoidance. This was fine until my medical maladies kept interfering with my reading enjoyment. That would really suck.

During college, after thyroid cancer, with my small paperback book collection, I would avoid studying or read in bed something less enlightening than any required reading. At point, I remember I had a book I really was getting into, something about a young woman and her life.... and she needed a heart transplant or could die... That was enough for me. I had a cancer diagnosis and was trying to deal with the same issue - I could die. I remember throwing that book across the room and giving up on it. It hit too close to home for that time in my life.

It took several tries and several years before I could finally read it. But it was a good book ruined by a dose of the mortality of man. To this day I hate it when that happens.

Shortly after my breast cancer diagnosis, someone recommended to me that I read this book written by a breast cancer patient. For the life of me I can't find it now. But I did like it. The author was writing the story about her breast cancer journey. She was a cartoonist so she wrote it in cartoon format. From diagnosis through treatment, it talked about everything - scanxiety, chemo side effects, etc.

I really enjoyed reading it. Until I got to the part where she died.... And it was finished by her husband. I was very upset.

Since then, I have been very selective on what I read. Sometimes it seems that book and book and TV show after TV show are about someone's cancer journey - good stories ruined by a bit of reality.

I found a library book this week, Virtually Perfect by Paige Roberts, about a woman who was a chef and had a TV show on the Food Network until it all falls apart. The back cover blurb promised a story about her summer adventures as a chef of the very rich and who she reinvents herself. It looked interesting. I love books about chefs because they talk about food - which is something I could talk about and eat for ever and ever. At no point did it realize it included a secondary plot.

Twenty pages into a 300 page book there is a hint about her mother's health. And presto, the secondary plot is exposed as the story of the mother's breast cancer journey and how she tried to figure out how to tell the star, her only daughter, about her breast cancer. The second plot appeared and left throughout the novel.

At first I was a little annoyed as to how a good story was being ruined by the cancer story. But then I discovered it was handled extremely well. It showed the range of emotions of how do I tell, I need to tell her, but no I don't want to ruin her summer, to no don't tell her yet. A breast cancer story was there but it was a subplot. I could handle that.

This time I decided it was handled so well, and perhaps I have come further along emotionally, that I ended up enjoying it. And would recommend it.

Maybe i won't be so selective about books I read in the future. Cancer won't drive me away as often.

Friday, February 16, 2018

Comparing Prognostic Breast Cancer Tests

Back in the late 2000's, I heard about the new Oncotype Dx test that was just coming available for women who had early stage breast cancer and could help in the decision making process - whether to chemotherapy or not. The test was supposed to tell your risk of recurrence. That was great news (of course I was not eligible because of my medical history...) and many women found their risk and made the big chemotherapy decision.

New research has looked at the results of these tests and compared them. They looked at these four tests: Oncotype Dx Recurrence Score, PAM50-based Prosigna Risk of Recurrence Score (ROR), Breast Cancer Index (BCI) and EndoPredict (EPclin).

"The analysis, published in JAMA Oncology, funded by Cancer Research UK and involving co-authors at the Institute of Cancer Research, compares four common prognostic tests for breast cancer, and finds that not all are able to accurately predict whether the cancer will return after five years. This could be limiting clinicians' abilities to advise patients on whether chemotherapy or preventive medication, in the form of endocrine therapy, should be taken.

Lead author Dr Ivana Sestak from Queen Mary's Wolfson Institute of Preventive Medicine said: "This is the first time that anyone has directly compared the prognostic performance of these four common commercially-available tests. This gives clinicians and oncologists the opportunity to review all the results and decide upon the test they want to use for their breast cancer patients.

"If a woman is deemed high risk of recurrence by any test, the benefit of chemotherapy is greatest. In contrast, if a women is deemed low risk then endocrine therapy alone will be sufficient and patients could forego chemotherapy and its side effects."

The FDA approved ROR and the European Society for Medical Oncology recommend Oncotype, ROR, and EPclin. The research found that while the tests provide good information Oncotype was found to lag behind the other three newer tests. And another nice factoid for all of us is:

"However, one important critical time period to consider is years 5-10 after the start of treatment, since over 50 per cent of women with ER+ breast cancer develop a recurrence after five years. BCI, ROR, and EPclin were found to be the most accurate for stratifying women into low or high risk of recurrence after five years in patients with node-negative disease.

For women with node-positive disease2 only those tests (ROR and EPclin) that incorporated clinical information (e.g. tumour size and the number of positive lymph nodes a woman has), as well as gene expression levels, provided substantial prognostic value."
I think to keep those dark thoughts saying 'what if...' at bay, I need to talk to my oncologist about these two tests, ROR and EPclin, and see if I am eligible for either one of these... 
New research can be good but if you can't take advantage of it, it is of no use. 

Thursday, February 15, 2018

Treatment Resistance Breast Cancer

Most breast cancers are hormone receptor positive or (ER+) and are treated with multiple therapies including chemotherapy and hormone therapies including tamoxifen and aromatase inhibitors. But the problem is then that after they metastasize,  a third of them become resistance to treatment and will cause your demise.

"Such endocrine therapies, including tamoxifen and aromatase inhibitor drugs, can prevent recurrence of early breast cancer, and can slow the progression of metastatic disease. However, in about one-third of patients with metastatic ER-positive breast cancer, treatment with endocrine therapies leads to the emergence of tumor cells that grow even in the absence of estrogen hormone, resulting in treatment-resistant disease that is often incurable."

Isn't that 'awesome'? If you have metastatic breast cancer and are treated with an endocrine therapy you have a 1 in 3 chance that its not going to cure your cancer - and you have no way of knowing if you are or not. However reesearch has been going on at Dana-Farber on this very topic.

"In the new report, however, the Dana-Farber scientists revealed another previously unknown effect of three of the mutations in the ER gene. That is, the mutations not only cause resistance to estrogen blockade, but also turn on genes that drive the breast tumors to metastasize to other organs. This kind of unexpected additional action of a mutated gene is termed "neomorphic."

"That tells us that even though the drug therapies are selecting tumors that can grow without estrogen, the mutations also confer a metastatic advantage to the tumor," explains Brown."

I don't like the idea of of the tumor getting an advantage. But they did identify the gene CDK7 is one of the essential ones in the mutation process. Another scientist at Dana-Farber had previously developed an experimental CDK7 inhibitor, THZ1. This now will lead to a clinical trial on this.

"Jeselsohn said that clinical CDK7 inhibitors are being developed, and that "we hope to test these drugs and develop a clinical trial for patients with ER-positive metastatic breast cancer.""

I just want a clinical trial that doesn't take ten years to help women with metastatic breast cancer now.

Wednesday, February 14, 2018

Doctors As Patients

I think doctor's make the worst patients. A friend's father, she told me, was a doctor but ignored his own cancer symptoms and said he was fine until he wasn't. I have never met a doctor who rushed to be a patient....

But I think the best training for a doctor is to be a patient - particularly a patient of the disease or ailment they treat. This would provide so much more understanding for them.

Here is the story of a British breast cancer surgeon who was diagnosed with breast cancer in 2015 and finally returned to work in 2017. She never expected to face this diagnosis. I don't anyone ever does.

"Doctors face particular challenges when they become patients—challenges that they are rarely prepared for. It is hard to relinquish control and allow others to dictate the treatments that you yourself are used to doling out. It is crushing to know your own prognosis in the starkest terms—a 65 percent chance of surviving for 10 years, in O’Riordan’s case. It is awkward to see your own former patients while you’re being treated: To strike up a chat would break confidentiality."

I would like to disagree here. I don't think it would be awkward to see your own patients while in treatment. I would not expect my doctor to treat me as a patient if I run into them in the store or something. I just say hello as I would with any other person.

"And it is difficult to be cut off from the same supportive forums and networks that other patients use to share experiences and support; if you let slip that you’re a doctor, you become a source of information, rather than a comrade in illness."

I have had doctors and nurses in my support groups. No one in the support group expected them to be any more 'up' on new treatments or provide constant medical advice because that is not what they are there for. They have occasionally filled in on a specific question or answered a question along the lines of 'should I go to the ER for this'. But that's it. In a support group setting, we can't anyone there to provide medical advice. First because they are there for support and second because they have no knowledge of our medical records.

"How much, for example, should she share with her own patients? O’Riordan had blogged regularly about her cancer. She had even done a TEDx talk. But she practices medicine under her maiden name, so few people would make the connection between her online persona and her professional one. Ultimately, she decided to say nothing at first, revealing her experiences only to patients who have completed their treatments and are dealing with the side effects. It helps them, she says, to know that their doctor fully understands how hard it is to live with breast cancer. “You don’t want to compare yourself to other people,” she says. “But when they’re going through that journey, it helps to know that the doctor has, too.”"

I absolutely think she should have felt she could share her diagnosis if she wanted to her patients with the same diagnosis. My best therapist ever had had breast cancer ten or fifteen years before she started seeing me. Because she opened up about this, while we didn't discuss it often, I felt much more comfortable because she 'got me' through her own diagnosis.

I would be very happy if I knew more about some of my doctors. No, I don't want to know everything about them.  But if I knew they had been through what I was being treated for it would greatly increase my comfort level. (Why is doctor patient confidentiality only one way? That's a question for another day blog post.) This especially holds true for specialists in my opinion.

Think about it - if you knew your gall bladder surgeon had had the same surgery as he was treating you. Wouldn't your comfort level with him go up a few notches? He survived, so can you.

Finally, I would like to state that I do not think that this surgeon was ready to return to work. If her brain was compromised by chemotherapy to the point she could not remember instrument names, I would not want her operating on me. Part of healing after cancer, or other ailments, is getting back to the same physical and mental states.

"Chemotherapy can famously fog the brain for years after the treatments end, so she still finds it hard to concentrate for more than half a day. When she returned to the operating room, she performed all the old procedures flawlessly, but at one point, she forgot the names of her instruments. “I was closing the skin and needed forceps to hold the tissue, but I couldn’t remember what they were called,” she says. “I was doing the action with my hand, and thankfully, with a good scrub nurse, you don’t need to ask.”"

My opinion is that just because she is a doctor it doesn't mean she should give herself clearance to go back to work. She was not able to work independently and needed to lean on her support staff to that extent.

In addition I will go read her blog to learn more about her. She has completed a school of hard knocks.

Tuesday, February 13, 2018

Doctor Questions

We are always told to write down your list of questions for your doctors and even bring someone to write down the answers. This can be appropriate for when you are first diagnosed with something nasty. But it doesn't hold true for regular follow ups with  your other doctors.

Over the years, I have learned not only to bring a list of doctor questions to appointments. But I have also learn to break it down into as few as possible, into two categories.

Category one is for the list of issues you have noted since last seeing them. For example you had the flu in November for ten days. Or have been under a lot of stress from work recently.

Category two is for as few questions as possible. Like three if you can do it. For example, if you were seeing your cardiologist:

  • What was my latest test result and what does that mean?
  • What are my treatment options for now?
  • What is my prognosis/next steps?
They may sound simple, like in the 'duh' category, but they are the ones you really want to get answered and take note of the answers.

I can't tell you how many times I got to my doctor appointment and have a huge list of questions and only get through the first few. Prioritize. Keep it simple. Your doctor is probably short on time so you can't overwhelm them with too many things at once.

However if you have a huge issue, you need to make sure that is the main topic of your conversation. Its your appointment and you need to make the most of it. So be efficient.

Sunday, February 11, 2018

Brachytherapy for Breast Cancer Follow Up

Back in 2007, when I was diagnosed and treated for my breast cancer, I heard about this new technique for the radiation portion of treatment, brachytherapy. I was jealous. It was not offered at my hospital. The big thing I liked was that it took so much less time for treatment.

Breast cancer treatment takes a LONG time. I was diagnosed at the end of May, after two surgeries that went into July, I finished chemo in December, and needed one more surgery (don't ask). I was then facing 7 weeks of radiation. I just wanted to be done. Since brachytherapy wasn't available I had the standard radiation treatment. I couldn't even have the shorter radiation protocol where you go twice a day for a week (blanking on the name).

Now, I was reading another article discussing breast biopsies in follow up breast cancer treatment. Buried in the article is this statement:

"They looked at 41,510 breast cancer patients in MarketScan (the national database of patients with private insurance, age 64 years and younger), and 80,369 breast cancer patients in SEER-Medicare (patients age 65 years and older). All had Stage I - III disease and were diagnosed between 2000 and 2011. Diagnosis and procedural codes were used to identify biopsy rates during follow up.

Five- and 10-year overall incidence of breast biopsy was 14.7 percent and 23.4 percent, respectively, in the MarketScan cohort, and 11.8 percent and 14.9 percent, respectively, in the SEER-Medicare cohort. Adjuvant chemotherapy use, patient age, and endocrine therapy were independently associated with biopsy in both cohorts.

Of note, say the researchers, the five-year incidence of breast biopsy was higher in women treated with brachytherapy, compared to those treated with whole-breast radiation: 16.7 percent in the MarketScan cohort and 15.1 in the SEER-Medicare cohort..."

The study does note that women can become very anxious after breast cancer treatment but does not offer a reason why the biopsy rate is higher after brachytherapy. But says they are still actively recruiting patients. 

Saturday, February 10, 2018

Genetic Testing and Non-High Risk

A person can be considered medically high risk due to their or a family member's medical history. If you are considered medically as high risk, you get popped into the category of give them lots more medical attention and 'lovely' tests.

Now with the progress of genomic testing, its no longer a big expensive, rare proposition. However, why do we only test the high risk people? These are the people who already know they are high risk. But that leaves a lot of people who don't know they are high risk and could be. This doesn't make sense. Some new research asks if it wouldn't it make more sense to test more people who aren't necessarily considered high risk? That might be more practical and save lives.

"A study published in the Journal of the National Cancer Institute indicates that screening the general population for mutations in specific genes is a more cost-effective way to detect people at risk and prevents more breast and ovarian cancers compared to only screening patients with a personal or family history of these diseases.

Current guidelines recommend that only those with a personal or family history that could indicate a greater risk of developing cancer be tested for gene mutations that can cause the disease. However, the successful use of testing for high-risk groups has led many to consider extending genetic testing for cancer to the whole population."

As I said it does make a lot of sense to do this. You would find people who did not know they were high risk and help prevent many more cases of breast and ovarian cancer. 

Mutations that cause cancer can occur in many people with no history to indicate a risk. These people are therefore not included in screening programs that target high-risk patients and the mutations remain undetected. The researchers of the new study estimate that implementing a program to test all women over the age of 30 could result in thousands fewer cases of ovarian and breast cancer in women in the US and UK.
However my response to this idea is a big fat 'No'. Isn't it kind of 'big brother-ish'? Yes it is. I'm sorry, but I would not approve of their approach to testing all women over the age of 30. The researchers then suggest:

"Population testing for breast and ovarian cancer gene mutations is the most cost-effective strategy which can prevent these cancers in high risk women and save lives,” said the paper's lead researcher, Ranjit Manchanda. "Our findings support broadening genetic testing for breast and ovarian cancer genes across the entire population beyond just the current criteria based clinical approach...""

It may be cost effective but that is not a way to treat patients. We are not little cost effective units that can be modernized or tested to meet some kind of cost effective study. We are human beings and need to be treated as such.

Yes I agree that we are normally subject to requirements to be immunized for certain illnesses. But this is different. Part of the reason for immunizations are that they are to prevent contagious diseases that can be passed from person to person. They can cause epidemics that can kill multiple people and cost significant amounts in medical bills.

Ailments causes by genetic mutations are not contagious. They affect only one person at a time. A person's genetic traits are unique. They should be kept private. They do not belong in some database anywhere to follow people around.

This would result in discrimination and bias if known to potential employers, health insurance companies, and life insurance companies. Even if such discrimination was illegal it would still happen. So no way in my opinion.

Finally, what if patients do not want to be tested. Some people (myself included) would not want to know the results of such testing. This is why I will not go to a fortune teller or tarot card reading. I do not want to know. I have enough to worry about as it is.

Clearly this is a case of 'just because we can, doesn't mean we should'.

Friday, February 9, 2018

Up and Down, Again

Everyone has ups and downs in their life, especially with their health. Or maybe I have more ups and downs than the average person.  Okay, maybe my health has been on a downward slide for a while few years now.

However, I realized the other day that I was actually feeling pretty well for the first time in quite a while. I mean my back has been sore but the rest of me has actually been doing okay. Its kind of nice actually. And it makes me think how long its been since I felt that well.

I had been feeling as if I was over-medicated in some ways for the past few years. I changed my pain management doctor and had reduced some medications over the past six months, with the help of my new doctor. I also finally am on a new medication for my rheumatoid. Finally, I think I am finally healed from my knee surgery. I think I also had a case of the flu in mid December (but I had gotten a flu shot so it wasn't that bad.)

All of those combined were apparently wearing on me.  But now I feel pretty good. I was considering talking to my husband about going for a walk with him this weekend. But that didn't last long.

For the past couple of days, I realized I have been feeling pretty well. This morning I had a lot of energy. I even was planning my social life for once. After the gym today, I went to the library. After I left the library, I realized I had to go pick up my prescriptions (again). All of a sudden I was exhausted. I didn't even have the energy to bring in the empty trash barrels. I dragged myself into the house and ate some food which helped. But now I am lying in bed. Probably for the rest of the afternoon.

Tomorrow will probably be similar. Up and down. If I get a fairly good night's sleep, there will be more up than down. But overall I am feeling better mostly.

Thursday, February 8, 2018

Overloaded with Instructions

I get it. I have a lot of ailments so I am in a lot of groups and follow a lot of organizations for their health tips. So I get lots of email. Tons of email to be precise. Some of it gets the delete button right away - especially if the subject line doesn't tell me anything.

But then I read glance at a lot of them before deleting. But often they provide suggestions or instructions how to be healthier for whichever ailment. But now I am overloaded with instructions/suggestions this week:

This is a partial list of what I have received this week. Last week there was something about coffee being bad. I have gotten instructions on so many things, I can get confused (which is not difficult at times). 

I realize one option is to stop reading about my ailments and receiving these emails. But I think it is important to understand as much as possible on your ailments. The more you understand about what is wrong with your body and what you can do to improve your situation.

On the other hand, it is definitely an overload. I do not have time to read all the emails I get. I pick and choose which get deleted immediately. Some I save for more in depth reading scanning at a later point. 

So not only do I get bombarded with ailments, I also get overloaded with instructions. Sometimes I cope by taking a nap or going to the gym to burn off stress. A nap usually sounds best.

Tuesday, February 6, 2018

My Back Pain Break Is Over

Just over a year ago, I switched to a new back pain doctor because my old one was an idiot. I like my new doctor. I saw him a whole bunch of times through 2017. At my last appointment, he said to me "instead of scheduling your next appointment, why don't we wait and see how you do and you call me when you need to see me?" I thought that was fine. I have not seen him since November and have nothing scheduled.

Unfortunately, my back is very unhappy with me in many ways. The pain level breaks through my pain patch. This has been going on for a week or so. I might wait another week or so before calling but I don't know how long I can last.

Damn, damn, damn. This does not make me happy. I didn't lift or carry things anything. I have done some laundry today but that doesn't usually hurt my back. Today I think I had an uncomfortable chair at the garden club meeting today.

On a positive note, it has been a while since my back has been this bad and required any treatments. This has been a very nice break. But at least I am not seeing my oncologist.

Monday, February 5, 2018

Because Of Your Medical History....

Once you get cancer or any other 'nasty' medical ailment, this little phrase follows you for the rest of your life 'because of your medical history...'. If you have this phrase following you around, you are lucky when you are not sent for more tests or additional follow appointments start filling your calendar.

As a child I was not the one (sister) who had ear infections non-stop or the one (brother) that went running around into and over and under things resulting into many minor injuries requiring stitches, etc. I was the reasonably healthy one, except for a few colds here and there.

Boom, at age 19, I was diagnosed with thyroid cancer and that magic little phrase started following me around. I never had a normal doctor appointment. Even if it wasn't discussed, that cancer history was still lurking in the air between the doctor and I.

It followed me for decades. Until I added another cancer diagnosis and then it followed even closer. And was probably written like this 'because of your medical history...'. Two cancer diagnoses before fifty and all the red flags start jumping up to the doctors. Do you have a genetic abnormality? Did you wade in toxic waste as a child or live next to a smelly factory? It didn't matter why, all it meant was I went to more doctor appointments than anyone I know.

Since then with a bad back (three different places), rheumatoid, and fibromyalgia, now my pet phrase is written like this 'because of your medical history...'. It is right on my heels every day. I now need my medical history to the point that I don't even dare to go to another hospital. It would take too much time to explain my ailments, allergies, and medications to any emergency room triage person. No, I can't print out a list to take with me because it changes too often.

So that little phrase has gone from an annoyance to a necessity. Damn. I wish I was healthy.

Saturday, February 3, 2018

More 'Uplifting' News on Breast Cancer Recurrences

Sometimes I wish they would stop researching breast cancer so we stop getting such 'good' news. New research was meant to look at whether some hormone receptor positive breast cancer patients could stop taking tamoxifen or aromatase inhibitors such as Femara, Aromasin, or Arimidex. However they found instead that ER/PR+ breast cancers can 'smolder' (their word, not mine) for twenty years or more, before recurring.

Aromatase inhibitors and tamoxifen inhibit the production of estrogen which feeds these ER/PR+ breast cancers. The longer you are on the medic

ation, the longer you are protected from a recurrence. However, some women experience side effects and want to get off them as soon as possible. Other women have no problems and stay on them longer than the initial five years.

“Even after 5 years of adjuvant endocrine therapy, women with ER-positive, early-stage breast cancer still had a persistent risk of recurrence and death from breast cancer for at least 20 years after the original diagnosis,” they wrote in their report, published in the New England Journal of Medicine.

“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,” Hayes said.

I am so excited by this uplifting news. Maybe its time to stop reading the research unless my oncologist tells me about something new.

Friday, February 2, 2018

If Breast Cancer Doesn't Kill You, Heart Failure Might

File this in the category of the stuff we should have been told but weren't. Many women diagnosed with breast cancer, are given chemotherapy as part of their treatment. One of the drugs commonly used is called Doxorubicin, also known Adriamycin or Rubex, or as us patients have been known to call it 'red devil', which carries a significant cardiac risk.

When you are given it in chemo the nurses put on masks and special gowns to protect them. No thought of the patients. I was told it could cause some cardiac issues but now I am learning that the danger is very real and very concerning.

"“Both breast cancer and cardiovascular disease share risk factors,” said Dr. Susan Gilchrist, a cardiologist at MD Anderson whose research focuses on cardiorespiratory fitness in cancer patients. "That includes weight gain, loss of exercise or sedentary behaviors, and metabolic dysfunction, which are a risks factor for breast cancer recurrence and cardiovascular disease.”

The greatest risk is from the chemotherapy drug doxorubicin, an anthracyclin. Eight treatments increase heart failure risk by 5 percent, up to a 48 percent increase after 14 doses, the doctors wrote in the statement.

But women with breast cancer are not encouraged to avoid treatment."

So there is a fairly significant risk of of cardiac damage but they are not going to encourage us to skip that treatment? If the you don't die of breast cancer, heart failure is more likely to kill you. Instead of skipping adriamycin for the benefit it gives, the advice is now to talk to your doctor. The problem with that idea (which is obviously written by someone who has not had cancer) is that patients with cancer care about only one thing when first diagnosed: get the effing cancer out of my body.

"“Any patient who is going to undergo breast cancer treatment — whether they have heart disease at the beginning or not — should be aware of the potential effects of the treatments on their heart,” said Dr. Laxmi Mehta, chair of the AHA writing committee and director of the Women’s Cardiovascular Health Program at The Ohio State University in Columbus, Ohio. “This should not deter or scare patients from undergoing breast cancer treatment, but should allow them to make informed decisions with their doctor on the best cancer treatment for them.”

With the statement, the Heart Association hopes to change perception of the biggest threats to women after beating cancer. Breast cancer survivors, over 65, are more likely to die from cardiovascular diseases, such as heart failure, rather than breast cancer."

That does not make me happy at all. I survive cancer and chemotherapy so I can die from heart failure? 

“We want patients to get the best treatment for their breast cancer,” said Mehta. “Everyone should have a conversation with their doctor about what are the side effects.”

Sorry not good enough. We need a better treatment for breast cancer that doesn't have such a hig risk of heart failure.

Thursday, February 1, 2018

A Useless 'Perk' from My Health Insurance

I have found them most useless perk from any health insurance plan ever. When I was diagnosed with RA, my health insurance informed me that I was eligible for this perk called the Accordant Care in.

What this plan includes is a quarterly conversation with a nurse on current medications and any recent heath issues I might have had as well as a monthly newsletter with health tips. The nurse is also available at other times if I have questions on any health issues.

That all sounds good, right? Wrong.

Every conversation with the nurse consisted of them reading me scripted questions that I had to answer: have I fallen in the last ninety days, do I have additional issues, have I had an RA flare, etc. Also, a review of each and every medication I am on and asking if I am still taking the same dose and if I have changed any medications. This could take as long as 20 minutes. I never have benefitted from any of these phone calls. I often felt like was interrogated during each call as I had to wait for them to review each medication and then go through the rest of their script.

Their newsletters are also useless. First, I used to get them electronically. The email would come with a long url in it where took you to a secure page where you had to sign in. If its a newsletter why does it require a secure log in? So they can tell if you actually read the damn thing.

I couldn't deal with those newsletters so they switched me to the printed ones. Often they are only one 8.5"x11" sheet printed double sided, in large type, with half a page of mailing space and fine print. So on those, you would often get one topic article that was about 200 words long.

I just got the latest newsletter and its just as annoying and just as useless. The four articles include: staying healthy and out of the hospital - you should have that as a goal; tracking changes in your health by keeping a journal; when you should call your doctor; a checklist for when you see your regular doctors; and finally a continuation on setting goals for 2018. 

It did not tell me anything I didn't already know. Its written in language an 8 year old could understand. And since its put out by doctors who probably had a lawyer vet it so it doesn't provide anything specific, other than you need to see your dentist every six months.

I have been ducking their calls for the last two years. If I could figure out how to get out of the program I would. If it was offered to you, I would not recommend it.

The lesson I have learned here is just because you are eligible for a 'perk' do not accept it before knowing what you are getting into. Accordant Care is just awful for the patient.

Wednesday, January 31, 2018

A Carcinogen in My Coffee

I feel like this is another step in the plan for Big Brother to take over our lives and regulate us to death. Seriously. Or maybe its just another way for the lawyers to get rich over stupid lawsuits.

There is a lawsuit making its way through the Los Angeles court system that wants companies who make or sell coffee to warn consumers that there is a potential carcinogen created in coffee brewing that could cause cancer. As part of Proposition 65 in 1986, California businesses need to warn customers that there could be a risk involved in consumption or use of a product. So the lawsuit claims that customers need to be warned about coffee consumption. When I first read this article, I asked 'what are they thinking?'

First of all, there are plenty of other things in this world that could cause us cancer - lets start with sunshine, drinking water, inhaling air, eating, and more.

Second, we do not need more regulation that would increase the cost of doing business.

Third, there is no proof that the chemical, Acrylamide, involved is even a carcinogen.

So as someone who has wondered, from time to time second to second, as to why I have been so lucky to get cancer twice, I really do not to waste my time trying to figure out if I drank a 'bad' cup of coffee at some point. I have plenty of other things to worry about - like where is my cell phone or what is that new pain in my back. I don't even live in California and it really just irritates me that money is being wasted on this.

Obviously the lawsuit was filed by someone who is not like me and doesn't have any dependence on their morning cup of joe.

I would seriously like to take the money wasted in this lawsuit and especially the legal fees, be put into something useful, like a cure for cancer.

Tuesday, January 30, 2018

Giving Back

Or helping yourself while you help others. After going through cancer, or other nasty medical misadventure, you are traumatized, and, as in the words of Arlo Guthrie:

" get injected, inspected, detected, infected, ..."

You do not have fun for many months as you watch your hair fall out, your blood counts go up and down. You also follow your tumor markers more than the stock market, try to figure out how to get rid of your 'chemo pallor', and lighten up any surgical scars. At the end you feel like you have been dragged through a swamp, up a mountain, and under the proverbial bus. 

You spend a lot of time trying to find the rumored "new normal" and crawl around dealing with PTSD. At the end, you are you again but not the same. There is a lot of coping involved and it doesn't end overnight.

Since my second cancer diagnosis I have spent more time trying to cope than I have ever done anything else in my life. One thing that has been very helpful for me, because of all the cancer crap I have had to deal with in my life, has been to give back and help other people who are coping with cancer - or just plain 'giving back'. 

In the past three weeks or so I have been connected with three people who are coping with cancer. They are completely disconnected from each other. But I am trying to help them cope. 

How can I help them? I am not a doctor. I am not a medical person at all and do not claim to have any medical or psych/social training. But I do have experiences to share. Most medical personnel have not been through cancer so they cant talk about it from my side of the street.

I can talk to them and help (I hope) them cope with what they are going through. I can help them find resources to give them more information (instead of listening to Dr Google or reading wikipedia). I am also living proof that someone can live through cancer twice. 

What does all that give me? It gives me the opportunity to stay connected with the cancer community. I can never ignore the fact I had cancer twice and those thoughts never leave my head. By helping others, I get a sense of satisfaction that I am doing something good, something that helps someone else. 

In addition, I am not trying to hide my real feelings about cancer by burying it some place where I don't talk about. I can't hide my cancer feelings so it does me a world of good to use them to help other people.

So if you have cancer, go find help if you need it, or if you can, go help someone else who would benefit. Do some good by giving back.

Monday, January 29, 2018

End Of Life Stuff

No I am not dying. But in the middle of the night I couldn't sleep and my mind wandered off to the best and funniest obituaries that you see shared around the internet. (I have no idea why my mind wandered that direction.) But I was snickering about some of the funniest ones I remember parts of.

But it made me think. I want to write my own obituary. And it will have to be a funny one. Because I want people to laugh about me or at me after I'm gone. And not mourn me sadly. But that should be in a couple of decades (I hope).

So here are some thoughts on what I will include:
  • She was so uncoordinated she could walk into a wall if she wasn't looking.
  • She spent many years abusing her body through ice skating, skiing, hiking, walking, and more to get her body into the sad shape it was later in her life.
  • Though she went through cancer twice, she made an effort to enjoy everything she did
  • Her overwhelming addiction to bacon was prevalent.... But she enjoyed cooking and would never follow a recipe.
  • A early in life bookworm she managed to kill many houseplants but did love gardening
  • She leaves behind her ever 'eye rolling' husband of X years, who put up with her cat fixation and tolerated her cooking.
I could go on with this list but it still needs finesse. I will keep working on it.

My grandmother, for the last 15-20 years of her life, had an 'In Case of Death' envelope. Whenever anything was remembered that would be useful after she was gone was scribbled on a piece of paper and filed in the same 9" x 12" envelope. After she died, we found many duplicates, some mysteries that may never be unraveled, and lots of last wishes. 

Maybe its my age, maybe its my 'oh so fun' medical history that prodded my mind in that direction, but I might need to get organized a bit more in this area.

Thursday, January 25, 2018

I Need A Nap - Or Reasons I Don't Blog

I haven't been blogging (as I promised) because I have been too exhausted. I meant to blog today, yesterday, the day before, and probably the day before that. But when I finally have a chance to sit down and gather my thoughts to blog, I am exhausted and just can't formulate words.

I do need to blog as it helps me destress. But I haven't been able. Maybe I just need a tropical vacation....

Sunday, January 21, 2018

New Breast Cancer Research Found A Factor that Doubles Death Risk

Isn't that a warm fuzzy feeling? Now I want to ask my oncologist if I have this factor. But first let me see if I can explain it. This is the precis:

"Researchers at Karolinska Institutet in Sweden have discovered that the risk of death from breast cancer is twice as high for patients with high heterogeneity of the estrogen receptor within the same tumour as compared to patients with low heterogeneity. The study, which is published in The Journal of the National Cancer Institute, also shows that the higher risk of death over a span of 25 years is independent of other known tumour markers and also holds true for Luminal A breast cancer, a subtype with a generally good prognosis."

Apparently Luminal A breast cancer is a subtype of hormone receptor positive that usually is a good thing. But if your hormone receptor status changes when you develop a metastases or even with in your first tumor (which sometimes happens). 

"Why this is the case, however, is not known, but a possible explanation is that there are tumour cells in one and the same tumour with varying degrees of expression of the estrogen receptor. This is known as intra-tumour heterogeneity."

But some recent research found that patients with high heterogeneity and Luminal A breast cancer, regardless of previous treatment, were found to have double the death risk. 

"Our study shows that patients with high intra-tumour heterogeneity of the estrogen receptor were twice as likely to die up to 25-years after their diagnoses as compared to patients with low heterogeneity," says Linda Lindström, researcher at the Department of Biosciences and Nutrition, Karolinska Institutet. "And this was independent of whether or not they'd received tamoxifen and of other known tumour markers."
The researchers also discovered that the greater risk of death for patients with high intra-tumour heterogeneity also applied to patients with Luminal A breast cancer, a subtype of estrogen-receptor-positive breast cancer that is considered to have a good prognosis."

So what does this all  mean to the average bear breast cancer patient? Me, I'm going to add this to the growing list of things to ask my oncologist. I don't know if I was ever tested to find out about heterogeneity or Luminal A and if I can be now. But I want to find out.

This is a classic case of new research on cancer finding more differences in the different types of cancer. As we have learned, cancer is not one disease but hundreds, or thousands of different diseases. Scientists are slowly unraveling them one step at a time. Sometimes panicking us patients, and sometimes making us feel a little bit better. But the process is way longer than I want.

Saturday, January 20, 2018

Early Detection

We do regularly try to detect some cancers early through mammograms, colonoscopies, and PSA tests. I think most of us (meaning the general public) are comfortable with these tests as we age. But what if there was a genetic test available which you could have done regularly, every few years or whatever time frame, to test you for several different cancers before they had a chance to spread.

A new test, CancerSEEK, has been tested on more than 1000 patients and seems very hopeful.

"The CancerSEEK test looks for mutations in 16 genes that regularly arise in cancer and eight proteins that are often released.

It was trialled on 1,005 patients with cancers in the ovary, liver, stomach, pancreas, oesophagus, colon, lung or breast that had not yet spread to other tissues.

Overall, the test found 70% of the cancers."

But do we want it? I'm not sure. Yes it would be nice to be able to get to cancer sooner but is it worth the stress and costs? By costs, I do not mean financial (because the earlier a cancer is detected the less it costs to treat) but emotional on the patients.

I know women, who have never had breast cancer, who get very stressed by their annual mammogram and hold their breath until they get the all clear (which is sometimes in the form of a letter sent weeks later). This can be a very bad time for them.

With my medical history, do I really want another pile of stress on me? I'm not sure. Yes cancer sucks but sometimes we just don't want to know what is lying in wait for us. I am very much up in the air on this.

I think this is in the category of 'just because we can, doesn't mean we should'. Medical professionals may think this is the holy grail of cancer detection, but I kind of find it like being micromanaged on my health.

Thursday, January 18, 2018

I Am Very Confused

I realize this must be part of the vast conspiracy to keep breast cancer patients confused. Nancy, over at Nancy's Point, blogged about the AJCC’s Updates to the Breast Cancer Staging System, asking if we are confused about it. Well, since I didn't know about the updates (or even who the AJCC is) I was and still am very confused.

Let's start with the AJCC or the American Joint Committee on Cancer. Apparently they are the people who set up cancer staging criteria. They set the original TNM staging system in 1959. TNM means Tumor size, Nodes positive, and Metastases. 

"The panel recognized the need to incorporate biologic factors, such as tumor grade, proliferation rate, estrogen and progesterone receptor expression, human epidermal growth factor 2 (HER2) expression, and gene expression prognostic panels into the staging system. AJCC levels of evidence and guidelines for all tumor types were followed as much as possible. The panel felt that, to maintain worldwide value, the tumor staging system should remain based on TNM anatomic factors. However, the recognition of the prognostic influence of grade, hormone receptor expression, and HER2 amplification mandated their inclusion into the staging system."

I used to know what stage I am - IIA. Now I can't figure it out. With all this other stuff included. I am very confused. I looked at the American Cancer Society's website for help. And I am even more confused. There is no more little chart that shows what you stage you are. 

So here is my game plan: I will ignore all this new information until I meet with my oncologist sometime next summer and ask her. I feel this is better for more. A little ignorance and confusion will go a long way in reducing my stress. 

Now all of us breast cancer people can have these little conversations:

'What stage are you?'
'IIa, I think.'
'Is that the old staging or the new staging?'
'What new staging?'
'You didn't hear about it?'
All the breast cancer staging changed in 2018. They added all sorts of new information, grade, hormone status, etc'
'Oh, so if I was stage IIb, do you know what new stage I am?'
'No, I don't even know what stage I am. I can't figure  it out. I'm going to ask my oncologist.'
'Crap, let me call my oncologist too.'

But I swear there is a vast conspiracy out there to keep us all confused.

Wednesday, January 17, 2018

Some Days Are Better Than Others

Yesterday was not one of the good days. No, I did not have a health catastrophe. But I had a couple of emotional/stress related catastrophes. To recover I went to the gym and destress by abusing my body on the stationary bike for a while. (Until my phone started ringing and I had to take the call because of other stress issues.)

And other stress happened. But I took a deep breath, had a glass of wine with dinner (a very yummy meal as we got some acorn fed pork from a friend). With dinner I made an apple chutney with cloves and a sweet potato hash. Cooking helps destress me. The fancier the meal the more stressed I am.

I hope today is a better day. I am staying home because of another tiny snow storm. In the meantime, I am sitting up in bed and hanging out with Boots. That should help my stress too. Boots is always relaxed.

Monday, January 15, 2018

Okay I lied

I did say I would blog more often and get back on regular blogging as part of destressing. But it looks like I lied. But I have a good reason.

My husband and I went away for a few days to take a real break. Luckily (if you want to look at it that way) the cell phone coverage was awful so we couldn't get any calls or texts from home.

We needed a break. I got to walk on the beach (okay it was in Maine and was a bit chilly) three times. We did some shopping. We explored. We ate out. We were lazy. We were on the ocean.

It was very nice. Now I can get back to blogging regularly.

Thursday, January 11, 2018

Your Brain On Cancer

Once you enter cancerland, your brain takes detours all the time. Where do these detours go? BAD PLACES!

"Is that a zit? No, of course not. Its a tumor. Must be skin cancer."
"A headache? No, a brain tumor. Dead in 3 months."
"Is that a swollen lymph node? Quick, leukemia or lymphoma, which one?"

As you can easily see you brain with cancer goes down the wrong roads. Usually in the middle of the night. Or when your are stuck in traffic by yourself.

You start making little deals with yourself. "I'll wait a month and see if its still a problem. No, a month? No three weeks. Wait, two weeks. Maybe ten days. Do I have any blood work coming up? Maybe that will tell me something."

"Wait, am I a lunatic? Actually thinking like this will turn me into a lunatic!"

The big thing is to learn to control your brain so it doesn't take all the detours. That is the really hard part of living with cancer. Your brain develops a this ability to drive you crazy and lead you into bad places. You need to get it under control so you can keep your sanity and avoid things like depression and anxiety.

Its a lifelong problem. It will never go away.  Such is cancerland.

Wednesday, January 10, 2018

Running On Empty

Today I am running on empty. If I had any energy, I would be on my way to the gym. I am not moving yet. Well I had some breakfast but am back in bed. I will meet a friend for lunch later today and then possibly drag myself off to the gym after.

I am exhausted.

Maybe I should go to the doctor or something. No wait, I had three appointments on Monday. And I see my rheumatologist next week. I can nap every day between now and then.

These days I am good for about 10 hours a day total. If I lie down each afternoon for a couple of hours, I can then stay up for dinner and go to bed early.

Talk about lack of quality of life.


Ignore everything I just wrote. I am whining. I am tired. Maybe I need a morning nap after 9.5 hours of sleep. Crap.

Tuesday, January 9, 2018

Until I Drop

Every day that I go out the door (which is not everyday), I go until I drop or that is what it feels like.

Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.

At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.

Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.

Monday, January 8, 2018

Back On The Fitness Bandwagon

Finally, I am back on the fitness bandwagon. This week is my first full week of three days at the gym. Finally. I am excited, but exhausted.

According to my card at the gym, I had an extended absence from October 4 to December 20. I was so excited to go back. But have forced myself to take it easy. With the help of the physical therapist at the gym, I cut back my exercise plan significantly. I cut down on the weight I use, the time I do cardio, and added a number of specific 'knee strengthening' exercises. I also have spent three weeks only going twice a week.

Its killing me.

Every time I leave the gym, I am exhausted. and I come home and lie down for an hour or so to recover. This is more than in the past. I was so tired yesterday when I got home from the gym, I tried to knit while exhausted and ended up having to pull it all out again and start over.

I guess I got out of shape.

This is a big week. First of all its my first week of going to the gym three times as opposed to twice a week for the past three weeks. Second, I have my three month follow up with the surgeon this morning. I just hope he doesn't tell me to slow down

I feel significantly flabbier these days because I spent three months sitting around. This has put me out of shape. With RA and fibromyalgia I can't just push myself like healthy people. I am going to have to take it slow for a while. Maybe in six months I will be back at my old workout routine and not as exhausted as I have been.

Sunday, January 7, 2018

Cancer Cure?

No there is not a cancer cure. We need to keep remembering that. We are told by our doctors that there is no evidence of disease or some thing along those lines - which just boils down to "we are not capable of finding it yet". If your doctor tells you that you are cured, please find a new one asap.

In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.

"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."

So as good patients we go to our doctors for years and do what they say. But we know we are not cured.

"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.

Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.

And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."

Five years out are we cured? No we are not. So we stop going to our doctors and promise to come back if anything changes.

And even though we know all of the above, there are still a few more caveats.

"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."

So what do we do? We are supposed to live life as if we are cured. We are supposed to like our new normal. But we are not cured and at this point have no chance of being cured. We can just  be happy with remission free survival and no evidence of disease. But not a cure.

Saturday, January 6, 2018

More Bacon Bad News

I learned back in 2016 that bacon is not good for fibromyalgia. That was very sad. Now I have learned that bacon, or other processed meats like sausage, can increase your risk of getting breast cancer significantly.

"From an analysis of more than 260,000 women, researchers found that the risk of breast cancer increased by more than a fifth for those who consumed more than 9 grams of processed meats per day, which is the equivalent of around two sausages per week.

However, the team found no link between red meat intake and the risk of breast cancer."

Well that's good news about red meat. But I would rather have bacon than red meat most of the time. And two sausages or three pieces of bacon is all it takes to increase your risk. 

I am mostly unhappy that yes I can get cancer twice and still have to quit eating some of my favorite foods to help prevent another diagnosis. That's not fair. 

Friday, January 5, 2018

Another Potential Cure And A Stressor

I do not know if I should be elated or frustrated or what. Here is another potential miracle 'cure' for cancer. No, I am not reading the back pages of some magazine but from a very reputable source. I realize these 'breakthroughs' happen all the time but they do cause stress to us cancer people.

I am not sure how much other people realize the amount of stress the constant barrage of potential news telling us about potential cures - with the supposition that it should be positive and provide hope for us. However, there are two problems with this.

The first one is that not all potential 'cures' ever pan out into something real. Second the amount of time to find out if it will actually work - usually more than a decade.  For people diagnosed with late stage cancer often do not have that long to wait. Think about those facts for a moment.

Its like you are chasing a carrot on a stick that keeps on being pulled away from you. Always just out of reach. And flitting away at the last minute. Eternally unavailable. This is incredibly stressful.

I started following all the breast cancer stuff in 2007, a decade ago. Now I am finally seeing some progress from new breakthroughs which were announced then. That was a long time to wait. The only personal benefit I have seen so far is the announcement that I get to stay on Femara (an aromatase inhibitor for probably ten years total). I have seen some other advancements in radiation given differently and for shorter periods of time.

My attitude is to ignore all these advancements. I like the ideas behind  this advancement. But I can't waste time getting hopeful about this one.

"Esculin is a chemical that naturally occurs in the horse chestnut and is beneficial to circulatory health.

Researcher Dr Jan Grimm said: ‘The possibility of developing a topical application from the gel makes this innovation an attractive potential improvement to current techniques of cancer imaging.’"

That is a very short version of the breakthrough. Use the link above to read more. But for me its another carrot on a stick that is held constantly just past my fingertips. I will ignore it until in 20 years it turns into a real advancement to keep my stress level down.

Thursday, January 4, 2018

Life Inside the Bomb Cyclone

All of a sudden the meteorologists are giving us their fancy vocabulary instead of allowing the media to create terms like 'snowmageddon'. So instead of living inside a blizzard (or a snow globe), we are inside the bomb cyclone.

What is it like? Today when I woke up it was not snowing. By 8am it was snowing. The black cat (Evil Kitty) came in with snowflakes on him. I am also watching the barometer (because we have one finally). It was at 29.8 last night, 29.4 this morning, and is already down to 29.3. I am being such a geek.

I did some planning yesterday afternoon. We have been home for days on end. We went out to dinner last week some time. But we also had a snowstorm, house guests, and the holidays. Since then we have been eating leftovers, morning, noon, and night. Last night I suggested we go out to dinner. Which we did. It was nice. I am so sick of my own cooking.

But I digressed. Its snowing like hell right now. The temperature is a balmy 18 degrees. Yesterday was 28. But for a week before that it was around 10 for a high. And Saturday is predicted to be around zero. (Can't wait.)

My plans for the day include catching up on the DVR, knitting, weaving, and reading. I will not leave the house unless I get really motivated. I might make some kind of something out of the last of the left over (damn) lamb from Saturday.  We might even pull out the scrabble game and play for a bit. I will ice my knee for a bit and when my back starts hurting I have my heating pad.

I also do not have any doctor appointments planned until next week. But I do have to make some calls on prescriptions... My insurance company changed mail order prescription provider as of the first of the year and everything is currently a mystery. I also have to make some notes on past and upcoming doctor appointments so I don't lose my mind when I can't remember anything.

So life inside the Bomb Cyclone isn't any more complicated than during any other snow storm. What would I be doing if we weren't having a 'bomb cyclone'? Probably the same thing, except I would not be watching the barometer.

Wednesday, January 3, 2018


I think today and tomorrow I will hibernate. Today is supposed to hit 28 degrees, the first time over 20 degrees in over a week so I might go out for a bit. Overdue library books might motivate me. The cats are going out for a bit. Tomorrow we are due to get a foot of snow. We will both be hibernating with the cats. Friday I will go to the gym and have a friend over for tea.

Hibernating is good and bad. The good thing is I don't go out and slip on the ice and snow and I won't get frostbite. On the down side, it does not help my stress levels. Hibernation can mean isolation. Today I am home alone. Tomorrow, I assume with the weather forecast, that my husband will be home as well. We will 'undecorate' the Christmas tree for fun.

Another portion of my self imposed isolation is lack of people to talk to. Yes I talk to my friends on the phone but most of them work. Thus I don't spend a lot of time on the phone during the day.

I do have a therapist to talk to but I actually haven't seen her in months - September to be precise. I had an October appointment but I couldn't drive so I cancelled it. Then I was put on the cancellation list and they would call me regularly to ask if I could come in for a cancellation that day. Unfortunately I still wasn't driving. Finally I got an appointment for December. Then I got a cold so I cancelled it. Now I have an appointment for the end of the month. Maybe I should call today and see if she has any cancellations...

Maybe I will find a new therapist closer to home. Who has more availability. And who clicks with me. I liked my old therapist but she retired. She 'got' me. She had had breast cancer and had psoriatic arthritis so she could understand where I am coming from. Also she was good at cutting through all the bullshit to help me figure things out.

I think I need a new one.

But first I need to get my day started. I have a list of things to do (if I can find the list). I need to learn to cope better so my hibernation doesn't overtake me.

That Drama Queen Friend

And this can apply to males as well. But we all have the drama queen friend who spends hours/days/weeks/months agonizing over their latest a...