I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment.

However my life has moved on. I have blogged about it in the past - that my life was changing - breast cancer is no longer the main focus in my life.

My chronic ailments have replaced that focus. While breast cancer never really goes away it turns more to be chronic illness than a terminal one, unless metastases appear. So I have a total of four chronic illnesses - breast cancer, thyroid cancer, rheumatoid arthritis, and fibromyalgia. I also have chronic physical ailments - bone spur, desiccated disks, and degenerated disks.

I may continue to post here periodically but not as often. My primary new blog is "Life With Chronic Illnesses".

Living With Limitations in the Family

This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a walk. I don't usually go for walks because I get plenty of exercise at the gym and going for walks isn't a great exercise for me. My back hurts and I get tired.

Other family members insist my mother go for walks too. They give her directions like if she would walk further she can get in better shape. She also should do her exercises, which she does. And she rides her little stationary bike while watching the news for 30 minutes every night. She gets plenty of exercise and really can't do more. I go to the gym three times a week and that's plenty of exercise for me.

My mother has had RA since 1989 and I have had it since 2012 (I think, maybe 2013). In addition we both have bad backs. She has had numerous back surgeries. I have just had cancer a couple of times.

With our health, we are not interested in getting healthier by working out because we are more interested in maintaining their health than becoming body builders. We just don't want to do too much and exhaust ourselves and then need days to recover and feel better.

We went for a walk. My mother had her rollator (brand is Hugo - She calls it Hugo, I call it Victor). We started our walk. We went down hill (because the hill is steeper if we go uphill) and we decided we would go until we felt we had walked enough and then would turn around. We went past the neighbors across the street, and then past the next house. At the third neighbor's mailbox, we turned around and went back. This is a neighborhood of houses with about 200' of frontage. It would be stretching it to to say we walked 1000 feet or 2 tenths of a mile. We felt that was ample. We thought the rest of the family would not appreciate how that walk was enough for us. And we don't need any more.

This summer there will be a family 2 week vacation. I have volunteered to take my mother up on the first day because neither of us work and we can start our highly energetic vacation which will consist of one activity each day (could be limited to going to the swimming pool) and a nap at 3pm daily. We also will not motivate in the mornings until after 9 am.

My husband was happy to hear that my mother and I will restrict ourselves accordingly.  Now we just have to come up with things to do within our limitations. Our plan is to have fun and not exhaust ourselves.

After Cancer Coping With The Instant Cancer Bond

So after you get diagnosed with cancer, it seems like everyone you know has cancer because:

You have met a lot of other people going through cancer treatment while hanging out at chemo, in support groups, your oncologist's waiting room, etc. That part is kind of nice. You find out you aren't alone in this cancer business. You have an instant bond with new friends.

Then you start hearing about all these other people who are diagnosed with cancer. You feel like you are supposed to be their friend too - because of that cancer bond thing again. Your cancer friends tell you about everyone they know when they are diagnosed with cancer because they have cancer and you have cancer so you can talk cancer all the time. And then it explodes, you meet and hear about more and more people with cancer and this cancer bond obligation doesn't quit. If someone you know  knows someone else with cancer, they expect you to become new best friends because you have that cancer bond so you must be alike.

If let unleashed, you will become swallowed by guilt that you are supposed to be friends with cancer people everywhere. But you have to learn to control the guilt so it doesn't swallow you.

I remember in college, I had thyroid cancer between my freshman and sophomore years. It was sort of an open secret - one some levels a lot of people knew I had cancer but no one talked about it. Back then cancer was evil and you were guaranteed to die soon.

Early in my junior year (I think), a male student I knew showed up at a party with another male student who I knew but not very well - who was now in a wheelchair dying from a brain cancer. It was a small school but we didn't have much in common. But now wait, we both had cancer so we could bond. How awesome! Not really. I felt it would be rude to excuse myself too soon because no one else wanted to talk to the guy in the wheelchair. But I also felt very much put on the spot because this instant cancer bond was there.

Finally I think I excused myself to get another beer or something. But I had felt trapped. Our mutual friend had trapped us together hoping to improve his dying friend's life by taking him to a party.

It was just awful. I felt guilt but there was nothing I could do. I did not want to talk to this guy anymore than he wanted to talk to me, we were not ready to compare cancer notes.

Another part of cancer coping is learning to manage that instant cancer bond. You can't let it suck you in so you get attached to every person in the world who has cancer (through that six degrees of separation thing) and bear their emotional burden of cancer. The guilt is killer.

While its nice to meet people with cancer and talk to them, you can't let it take over your life.

Blogging Peeves

I love blogging and I love reading other people's blogs. But I have a few peeves (of which I cannot claim I have never committed) that just irritate me.

• Select the correct word. There is a huge difference between they're, their, and there; and reign and rein; and its and it's. And I can go on. If you aren't sure, look it up on dictionary.com or thesaurus.com for help. It will really help people decipher what you are writing about.
• Spelling, spelling, spelling. If your blog app indicates a word is wrong or autocorrects to something you don't understand, correct it. How many people's resumes include the term that they were the 'manger' of a department because the omitted 'a' in manager becomes manger. Or when I worked for a legal non profit the omitted 'l' in public. 
• Punctuation wasn't taught as an optional part of studying the English language. Its important. Run on sentences are one thing. But if you type an entire paragraph without using a single comma something might be incorrect.

I am not perfect. My high school English teacher told me I would never be a writer. Through my career I have done a lot of editing other people's writings and have learned the importance usage, spelling and punctuation. 

After I write each blog post I usually go back and read it before posting. I have also been known to reread earlier posts and go back and make corrections.

A blog may be the result of a stream of consciousness that just pours out. But editing is usually required.... But keep writing and reading.....

What A Stupid Policy

I guess I am back to blogging. I woke up this morning and read the paper. I could not believe this policy.

"Breast cancer screening is offered to all women aged 50 to 70 in England every three years; they are sent invitation letters to make an appointment for the test."

Apparently in the UK, patients are 'sent invitations' every THREE years for a mammogram. The parts that piss me off are that patients are only invited for a mammogram (shouldn't it be automatically scheduled by their primary care's - or another doctor's - office?) every three years. What's wrong with annually? Or is it too expensive for the NHS?

And they missed 'inviting' 450,000 women since 2009? How do you miss that large a group of people? Why couldn't they get their mammograms without an invitation?

What a crazy policy that was obviously set up by people who do not understand breast cancer. but never fear:

"Hunt apologized ‘‘wholeheartedly and unreservedly’’ for the suffering caused and promised there would be an independent review of the national breast screening program."

Maybe they should get a new policy instead.

Blogosphere, Here I Am

I'm finally back in the blogosphere. (I'm not sure I like that term but I'll use it). Blogging really helps me cope with life. Its where I share my emotions and thoughts and I've missed it. But I did need the hibernation.

Since the middle of February, when my father stopped his chemo and was gone in two weeks, until now, I have been on a roller coaster of emotions. I have been lucky enough not to have lost a family member since my grandmother passed away in 1983 so this was very difficult. In addition, my health made it more difficult for me to do much to help the rest of my family pull together the memorial service, help clean out my parent's house (my father was a packrat in many ways), and spend more time with my mother. We have also had visiting relatives to deal with.

Last week, we left town for a week to take a much needed break and went to a friend's daughter's wedding in the Midwest. The physical distance let me strengthen the break so I have returned mentally healthier but more exhausted from our travels.

However I have a backlog of emotional issues to work through. Which is why I am back to blogging. This blog allows me to work through my emotions and cope with my decrepit body.

I think my focus may switch from breast cancer for a bit but I'm back.

Coming Back to Life

We are slowly coming back to life. We are all still very sad about my father's death. But his service is finally this weekend. 

At the last minute he decided to donate his body to benefit others. However due to his age, 89, and his cause of death, cancer (love those circulating cancer cells), options were limited. He donated his body to Harvard Medical School for research. They will keep his body for up to two years, but more like 12-18 months and then return his ashes to us. 

In the meantime we are having a celebration of life type service at a local Unitarian church this weekend. The service should provide some sense of closure for all of us and help us start to put our grief behind us. 

However, in the process of putting together the service, all of our emotions are riding high and we are stressed. There are a lot of opinions and thoughts that create some conflict. But I think we will be able to pull this together and start the process of healing. 

One of the reasons I did not discuss my father's health before his death is it was not my story to tell. It was his story. I may have alluded to caring for someone and taking someone to doctor appointments but for the most part I kept it to myself.

I am trying to take care of myself as much as possible. My knee continues to heal. My exhaustion continues to thrive. And when I miss my daily nap, I tend to get cranky and go to bed early. 

Hibernating, or Looking My Wounds

Often when I am extremely stressed, I find I need to hibernate a bit, and 'lick my wounds' as they say. For the past month, since my father died, I have been craving time by myself, lots of time alone. (Cats optional.)

The only day I usually have nothing on my calendar is a Tuesday. I have had something on my calendar every day since. Yesterday I was supposed to have a doctor appointment but it was cancelled because the practitioner was sick (instead of the patient being sick). That meant my calendar was empty. I got to stay home.

I enjoyed my solitude and got lots of things done - like laundry. But also I focused on my weaving and knitting. I got a big dent in a project. Now I can move on to the next project so I got a sense of satisfaction.

I enjoyed my day of hibernation. I may need a few more soon.

Coping with Other's Cancer

When you are diagnosed with cancer, you are faced with the World of Oncology. Inside that world lies the answers to your questions and how to keep you alive. As you go through diagnosis and treatment, you get to educate yourself on your illness and what's involved in getting through it.

Oncologists have to go to medical school to learn all this crap. Us patients get the express pass and learn it much faster and more intimately. Doctor's say 'may cause nausea and hair loss'. We know it means we will watch our hair fall out as we shop for a wig and try to keep something in our stomachs. We learn what the truth really is and how to translate their words. A year into treatment, we are pretty educated in 'oncology' and can help others.

My father was diagnosed with cancer in 2013, I got to be his entry into the Great Oncology Wall. He was diagnosed with Waldenstrom's lymphoma, a very indolent type, which is only treated when symptomatic. He was symptomatic so he started chemotherapy which ended up destroying his immune system.

Through all of his treatment my father used me as his source of information. Where to find good information on his disease and its treatment?  (and, no, Wikipedia is not a good source of medical information.) At every proposed test or medical misadventure, he would call me and ask me if I had had it and what was it like.

When his veins were destroyed through chemo, he had to get a port.When  he got his port, his next question was 'when do I get it out?'. The doctors wouldn't say anything. Finally, I said 'after you don't need it for six months, you can ask your doctor about getting it out'. He pondered that and was fine.

In May 2017 he was diagnosed with pancreatic cancer. He asked me to come to all his appointments so I could 'translate'. I would bring my list of questions that I thought we needed answers for. He didn't always agree with me but I still go the answers. I thought we should ask the oncologist 'what are the chances that this chemo protocol will work?' when he insisted there must be more chemo options and wanted to continue to try treatment. He didn't like negative answers to that.

He also cracked jokes all the time with the nurses and doctors. He criticized my wheelchair driving abilities but I complained he was the one who taught me to drive. He also would introduce me to his doctors as his daughter with more ailments.

Last fall he stopped asking me to go to his oncology appointments because I agreed more with the oncologist than with him about continuing treatment. But after three CT scans showing continued tumor growth (he would call it 'they are going forth and multiplying'), he finally asked me to take him to his fourth CT scan and following oncology appointment again. He was starting to feel weak and confessed that because of the number of meds he had to take as he was allergic to the CT contrast he wasn't supposed to drive himself. (He had selective hearing for medical advice he didn't like.)

Before his appointment, I had a discussion with him about what the oncologist might say about what the CT scan might find. We talked about quality of life and maybe it might be better without the dragging down of chemo might be better. Because I asked my pushy questions, and agreed with the oncologist that there really weren't more options for him, he agreed to stop chemo. It was a whirlwind and I think he was pleased.  It meant less doctor appointments which were beginning to tire him.

But it also meant that we moved on to his next stage in his cancer journey, when the hospice nurses showed up and could answer many more questions honestly than I was able. But he kept his sense of humor to the end.

For the past year I have not written about my father's cancer. It wasn't my story to tell. But now I am able to share and write through some of my stress. I will continue to write to help me cope better.

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.

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.

Reprioritized

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.

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 breastcancer.org, 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. 

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.

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.

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.

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.

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.

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 hospital released a statement:

"“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. 

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?

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.

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. 

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.

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.

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.

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. 

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'.

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.

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:

• No more asparagus for me because it can lead to breast cancer spread. I like asparagus. Damn.
• Exercise can reduce breast cancer recurrence. I'm exercising, I'm exercising, I'm exercising.
• Milk and beef can trigger RA. What? No more cheese?
• Yoga can help with fibromyalgia. Too bad my doctors told me no yoga because of my bad back. And my knees don't bend that way.
• Fibromyalgia can cause dizziness. This is actually good news because we have been trying to figure this one out.

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.

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.

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.

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.

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.

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.

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.

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:

"...you 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.

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.

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....

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.

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.

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?'

'No.' 

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.