Talking About Medical Crap

This morning I briefly had the opportunity to read a wonderful blog post about why the writer writes about her medical issues. It was a great post that clearly spoke about all the issues us 'less than healthy' people have in our lives. Now I can't find the link to it but it definitely spoke to me. So here are my thoughts on this, in a less well written post.

I talk about my health issues because there is no reason not to. I am not going to be job searching again so I don't need to worry that a potential future employer would learn how unhealthy I am and therefore choose to never hire me. There is no way I am every going to be able to work full time again. So that is one of the big reasons people don't talk about their health - it could prevent them from being hired at some point in the future.

But the biggest reason I do talk (and write) about my health is that it is a big coping mechanism for me. Yes, talk therapy. Its a wonderful thing. Its the reason support groups, on line groups, and all that other stuff exist. So I am not the first person to come up with this.

Also, there is that little evil voice in my head that pops up every so often that says 'I HAVE SEVERAL CHRONIC DISEASES SO THE FUTURE ISN'T THAT ROSY'. I think if I keep talking about it and my limitations I might get more comfortable with talking about it and stressing and depressing less. Although life can be made better through chemistry (read: anti-depressants), it would be even better if there were no need to require them at all. Which leads to the next question would I be better emotionally if I was healthier? One would think so but it is impossible to know if true or not.

My thought for the day is to talk and write about my health issues but not to allow them to dominate my life.

My Capabilities

I just want to make a statement about my capabilities. I have been 'accused' of only doing what I want and ignoring my responsibilities. That is wrong. I only do what I can. I need rest. I need time to recover from doing anything.

Saturday we went to the beach for a couple hours. I mostly sat there and then we went out for an early dinner. When we got home, I was exhausted and lay down in bed. Yesterday I was too tired and we stayed home and I took a nap.

I have to make sure not to over exert myself. I don't ignore my responsibilities. I just try to do as much as I can without exhausting myself too much. Topic closed.

I Love Social Media

I am active in social media. Believe me, I blog, I'm on Facebook, my blog is posted in a bunch of different places. I am Google+, I can't list all the places I can be found online because there are so many. I get feedback and comments from lots of places too. I get comments from friends and also from people offering all kind of  'miracle' cures provided I send in a few (hundred/thousand/million) dollars to help. And every so often, I hear from some very 'odd' (odd, in the weirdest sense of the word) people.

So yesterday I wasn't very surprised to get a comment back on "Call Me Ms. Grumpy". It read:

"stop being so self centered and focus on something,somebody beyond yourself-yeah i get it,your dying,but we are all dying,your just dying faster--go to a battle field cemmaetary and see all the young people who died very early--your nothing special"

For a nanosecond, I thought to myself 'what an ass'. But then I did think that in the grand scheme of things me being self centered is the least of my worries but it is true that I can be a tad focused on me. And its my blog so I can say what I want (because its supposed to be about me anyway).

However, I do get the point. There are so many people who are dying senselessly in needless wars who we should be concerned about.  

Call me Ms. Grumpy

I am very grumpy these days. I think part of it is juggling my medical issues. But its also that I have been dealing with a lot of pain, and in new body parts. I am still on that never ending roller coaster of 'wait its another doctor appointment' each week. Also, my stupid CPAP machine doesn't help me. I have given up even using it because the mask doesn't work for me.

Last night I almost cancelled all my plans for today to stay home and pout. But I realize pouting never got anyone anything so I ditched that. I did get some good sleep last night which helps. And my reward today is getting my nails done this afternoon after I go to the gym.

This just goes to show the strain of living with chronic ailments (two cancer diagnoses, fibromyalgia, rheumatoid arthritis, multiple problems with my back) and conditions (pain, discomfort, depression). You go to the doctor to get treated but having to keep going to the doctor gets depressing. I think I have served my seven year tenure and deserve a year sabbatical from all medical appointments and medications (as if that would ever happen).

So today I am grumpy. I can't find my phone and know it isn't charged so maybe I'll just be phoneless today. That might not be a bad idea. I'll go to the gym and take my grumpiness with me and burn it out during cardio.

Hobbling Around

Yes, I do hobble around. Some days more than others. But yes I do hobble. Why do I hobble? Because of my bursitis in both hips, my arthritic feet, my bad knees, my bad back, and more. (Occasionally I have been known to 'hobble' if I was getting dirty looks because I use my handicapped placard.)

However, hobbling along I get to go lots of places, provided I can rest routinely and amply so as not to stress myself out. As I hobble I get to places like the grocery store, the gym, my knitting group, and, of course, doctor appointments (can't have enough of those).

I sometimes even meet friends for coffee or other stationary activities where I do not have to stand around. I plan to visit a museum with friends next month. What makes me happy is they have wheel chairs there and if I start to get tired, a friend can get me one to use while I am there.

But that is my life and I do not have time to stress about being in pain. Furthermore I don't want any pity. Pity causes stress because it makes me feel bad about myself and my state of health.

So What Causes Your Depression?

Today at my therapist's, she asked me if I thought my pain issues cause my depression. I don't think so. But we had a discussion on the subject.

I think my emotions have been screwed up since my thyroid cancer diagnosis in 1981. Honestly, don't you think that a cancer diagnosis without any emotional support wouldn't cause depression? It just took a long time for me to realize how screwed up I was. Then at my second cancer diagnosis I decided I needed to be proactive about getting emotional support.

Then my health collapsed and you wonder why I still am depressed. Add some chronic pain into the mix and a bunch of other ailments and you wonder why I am still functioning.

It was nice to have her address it and ask what I thought instead of handing me some 'made up' reason that someone else came up with. I like having an impartial person to discuss my issues with but I think my point of view is important.

I Need to Stop Reading Medical News

I usually like to read the latest medical news. Mostly because I have a lot of medical crap going on. I like to see what is going for advancements and research. I mean maybe some day someone will find the cure for me and all my ailments and I can go back to being a healthy person.

But sometimes the news isn't what I want to hear and isn't very good. Like today.

"Fibromyalgia Worsens Function in RA" This is not what I wanted to hear. Also there is a higher prevalence of fibromyalgia in patients with RA. But there are treatment options for patients with both RA and fibromyalgia.

But still, I don't like the part about worsening function. Crap. Maybe I should read the political news instead.

We Can't Be Mad About Our Cancers (Ailments)

I read someone's blog post or article about someone else who died so mad about her cancer. This is wrong. I can tell you from personal experience. When you have cancer, you do not have the luxury of being 'mad' about your medical crap. Its not worth it.

There are the five stages of acceptance. One of them is anger. We need to get past this as easily as possible. By working on our emotional side as well as our physical we can more quickly get past the anger and then learn what it is like to live with cancer.

When first diagnosed with cancer, I did everything wrong. The biggest thing was I never talked about it, discussed it, figured out its impact on my life. I was mad about it for a long time. Maybe 15 years. That was horrible. I had so many emotional issues because I hadn't dealt with my cancer.

So now I know that my biggest issue with treating physical diseases is also treating the emotional ones. The emotional ones are just as important. But are not treated that way by medical doctors. Medical doctors are focused on our medical care but do not always have the 'bandwidth' to deal with the emotional side. This is where the patients need to turn proactive.

At my first cancer diagnosis, I remember waking up in post op with the doctor sitting on the edge of my bed telling me I had cancer. All I remember thinking is I am glad he told my parents so I didn't have to.

At my second diagnosis, my husband and I met with a medical oncologist, radiation oncologist, surgeon, and social worker in the same day and we all discussed options. Much more emotional support, but not necessarily enough.

But I learned. What I learned is that I need to focus on my emotional side as much as my physical. I can't sit back and wait for care. I need to focus on getting the emotional care I need.

Our Cancer Friends Become Most Important

After years of living in cancerland, I have learned our cancer friends become most important. Before cancer, you meet someone with a cancer diagnosis, and you can get stuck in this awkward pause thing.

Am I supposed to ask how they are doing? Or will they think I am prying? Do I mention cancer, or not? Do ask I when they are going to a hospice? Do I ask to bring them a casserole? You aren't really sure. And you really do not want to offend them, because, well, they have CANCER! And you cut them some slack if they aren't up for socializing.... is cancer catching?

Once you have a cancer diagnosis under your belt, you understand and realize that you probably won't say anything stupid, like all those other non-cancer people have said to you, like 'are you dying?' Or, 'do you know how long you have?'. You realize you can be yourself and crack stupid jokes about medical professionals and how other people don't understand your life.

Before cancer when you meet someone you might be a bit reticent because you don't really know them. But when both of you have cancer, you can start talking right away. You have a mutual topic of conversation. The first topic usually is how treatment is going or how the rest of your family doesn't get it.

Your cancer friends understand you like no one else. You can talk to them about those 'holy crap' moments at 3 AM (doesn't everyone wake up and think the cancer cooties have returned?) You can call them when you think something 'bad' is going on. And you call them first, when you get good news from your oncologist (who is your other best friend).

Slowly your cancer friends become some of your closest friends in your life. Once a cancer friend has 'held your hand' through another roller coaster ride, you are bonded for life. You will always reconnect to them, no matter how much time or how many miles have kept you apart. You are happy to get together with them at a drop of a hat.

While cancer may kill us, it creates a bond like no other with others who are going through the same thing.

Breast Cancer Fake News

The 'secret' breast cancer cure, that the pharmaceutical industry has known about and hidden from patients in an effort to make money, has been revealed and been approved by the FDA. Now you can just get an (side effect free) injection and are immunized from any potential cancer diagnosis. One lifetime

Cures are also in the works for congestive heart failure, emphysema, Alzheimers, AML, MS, rheumatoid arthritis, and fibromyalgia. These should be approved by the FDA by the end of the year.

As a result the world's population is now increasing at an exponential rate. NASA is developing new plans for colonies on Mars in the next decade to reduce over population.

So maybe this is all wishful thinking on my part. But seriously this fake news crap has to end.

Chemo Without Losing Your Hair!?!?

I had heard about these when I was in chemo - cooling caps to prevent hair loss. They were knew and being tested and not really available. Now new research shows that wearing a cooling cap seems to prevent hair loss for most patients during chemo for breast cancer. Sounds easy doesn't it? No pills, no real side effects. I could wear a hat during chemo easy, peasy.

I think (based on what I have heard and am not sure I remember all the details correctly) that patients wear a cooling cap during their chemo session and then keep it on for another 45 minutes or so. Small studies have shown that women who wear the cooling cap, lose less or very little hair than the women who don't wear a cooling cap.

Currently there is one cooling cap approved for use in the US and another under review by the FDA. Sounds cool, literally. The way they work is that they cool the scalp to around 37F and slow down the cell division process during chemo:

"Researchers don't know exactly how the cooling caps work. One theory is that cooling constricts the blood vessels in the scalp, slowing the circulation and thereby reducing the amount of toxins to which hair follicles are exposed.

Or it may be that cold slows the growth of hair follicles, making them less susceptible to damage from chemotherapy, which targets rapidly dividing cells.

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society, says it could be that "by slowing down those cells whatever mechanism it may be — either starving their blood flow or slowing them down straightforwardly — the net effect is beneficial, causing hair not to fall out.""

But of course there is a small snag with this:

"While chilling the scalp may seem to carry few risks, Lichtenfeld says there is a theoretical risk that inhibiting the effect of chemotherapy in the scalp could allow metastases to take hold there."

So hmmm.... Maybe not so much.

Okay, so I like the idea that you can go through chemo for breast cancer and not lose your hair. Losing your hair is so emotionally damaging. Believe me I hated losing my hair. There are no pictures of me bald - I made sure of that. I still don't think I have emotionally adapted to it still.

But if there is the potential that you could get mets to your head as a result? I am not sure I would be comfortable with that. I know people who have gotten mets in their skull so its not that out there. And they are so new that there is no long term research to show this.

So there is a downside. I would have to think about this seriously and look at more research before I would be comfortable with this.

More Evil Cancer Cells

So I didn't know (or maybe I kind of knew and was pretending I didn't) that some cancer cells go hide in your body to come out later as metastases. However, current research has been working on this issue.

"...researchers have discovered the conditions by which specific signals in primary tumors of head and neck and breast cancers can pre-program cancer cells to become dormant and evade chemotherapy after spreading."

How nice. Or actually how evil! I think it is pretty nasty when cancer cells hide so they can recur and try to kill you. The elude conventional treatments including chemotherapy.

However I think its pretty darn good that finally there is research going on that will help develop new ways to find these evil cells and stop them.

"Recurrence of cancer after initial treatment remains a critical unsolved problem for too many patients," said William Oh, MD, Chief, Division of Hematology and Medical Oncology, and Professor of Clinical Cancer Therapeutics at The Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai. "This highly innovative research provides a novel path forward for targeting dormant cancer cells which may be 'hiding' from our available therapies and which may need additional drugs to root them out and improve cure rates.”

Exercise, or Reducing AI's Side Effects

All of us 'lucky' people with hormone positive breast cancer, get the 'benefit' of being able to take hormone therapy or aromatase inhibitors (AIs) such as Femara, Aromasin, etc. These lovely little pills potentially reduce your risk of breast cancer recurrence (that most dreaded of all possibilities).

However these aforementioned lovely little pills cause nice side effects such as bone loss and joint pain. I have friends who had to discontinue AIs because of these side effects. They can be THAT bad.

So a new research study (because we always need more research) has come up with a cure for these issues: Exercise. Parts of me says this is just another reason they want us to exercise. But in this case apparently it really helped women in dealing with the side effects.

Guess what the suggested exercise is: 150 minutes a week of aerobic and resistance exercise. That is the same amount that is suggested for every one for every issue.

I do more than that each week. I do about 180 minutes of cardio and then another 120 minutes of resistance exercise. I have joint pain and osteopenia (the precursor to osteoporosis). I think I would be in horrible shape if I didn't exercise.

I guess this study results in the same message we get all the time: exercise.

Every One's Cancer Is Different

I now know many women, dozens, probably more like hundreds, who have been diagnosed with breast cancer. Sadly not all are still with us.

The one thing I have learned is that everyone's cancer is different and presents differently. A case in point is a friend went to see another friend who was newly diagnosed with stage IV breast cancer. Two months after her diagnosis she cannot walk with out a cane because of the mets in her hips and her arm is huge with lymphedema. Two months! Her first symptom was hip pain.

I have a friend who was diagnosed with breast cancer at stage IV about four years ago and she was gone within 8 weeks of her diagnosis. Her first symptom with rib cage pain.

I have another friend who was diagnosed with Stage IV breast cancer 16 years ago. She is doing fine and hanging in there.

That is a huge difference. We can say that treatment has progressed rapidly in the past 15 years but the woman who was diagnosed so late is the most recent case.

While I digest the shock of the most recent diagnosis, this underlines what I always need to remember: everyone's cancer is different, everyone's cancer story is different. We all need to remember that.

This makes me think of the position that an oncologist faces with each new case. How is this cancer story going to unfold? What are the best options for this patient?

My question then is how do they figure out how to best treat each case? I know they have statistics and recommendations on different protocols but each story can be so different and the options are vast. We may complain about our doctor's some times but if we think about what they are trying to decipher and unravel, we should be amazed.

So as we listen to other's cancer stories, we need to remember that each cancer is different, the options are vast, and the outcomes will vary wildly.

Sleep Deprived

I have had this 'dumb a$$' CPAP machine for 12 days now. I hate it. I hate the little mask over my nose that squishes it even though I have loosened up the strap as much as I can.

I hate the way the hose from the mask to the machine comes from the back of my head so I can't sleep on my back without the pillow under my shoulders and neck so the hose is off the pillow so it doesn't stick into my head.

I hate the little online app that is like big brother and tracks how long I use it, if the mask is sealing, how many apnea 'incidents' I have each hour and how many times I take it off and on each night. It also has a little scoring system that tracks all this information and makes you feel like a loser because you can't quite sleep right with it on.

Now I need a nap because I didn't get enough sleep last night. Again.

This machine is supposed to make it so I can sleep better, not sleep less.

But I will suffer in silence until Friday when I go to the CPAP clinic to see about a different mask. I asked them if I should bring the mask I really hate with me. They laughed, and said yes.

Rant over. I am just frustrated and tired.

And after 10" of lovely winter whiteness in the form of snow on Thursday, we got another 5" last night, and are due for another 8-16"+ on Monday. Which means I am trapped at home. Again. Grrr.

Deciphering Test Results

As a result of my RA and its treatment, I need to get blood work done every two months, or more often. How fun.

Yesterday I went for my first blood work of 2017 to find out that the doctor's standing orders in the hospital's computer system ended at the end of 2016. I had to call my doctor to get them reinstated. Then the tech tried three times in my elbow (I have little scrawny veins and only one available arm after chemo) before trying twice in the back of my hand before getting in.

Now I have the results back and I am trying to decipher them. What exactly do they mean? I know a few of them, but not all:

• My red blood counts never recovered from chemo
• My CRP (c-reactive protein, a sign of inflammation and RA) is elevated.

And the rest of it, some in normal ranges and some not, don't make much sense to me. I see my rheumatologist next week and I am sure she will say 'helpful' things like: 'your blood counts are pretty good but I see the elevated inflammation'.

I'll wait until I see her next week to learn the rest.

Breast Cancer Update 2017

Several organizations have posted their latest information on the status of breast cancer in the US in 2017. I just found this overview with links to various resources for more information. So go read up on

Research for Cancer People

I would be happy to participate in research that might benefit other cancer people in the future. However, I am always told that I have too many other ailments and am not eligible. Insert 'Unhappy Face' here.

But I was overjoyed to find out that there will be a program on this Friday February 10 at 12 pm ET that will talk about how people with cancer can participate in research. Its a webex session meaning that you can participate remotely.

I learned about this program by being subscribed to Johns Hopkins Artemis (which provides the best information on new breast cancer research). If you have breast cancer and aren't subscribed, you should.

This is the blurb that is available when you register:

Ask the Experts: How to get Involved in Research As A Survivor:

The George Washington University (GW) Cancer Center invites you to join us for an upcoming Ask the Expert session titled How to Get Involved in Research as a Survivor . Survivors' cancer experiences give them unique expertise that is crucial to strengthening research and improving patient-centered care. Survivors can improve patient-centered research by sharing their insights in a number of capacities, for example by reviewing research proposals, advocating for research funding and participating on the research team. Yet, understanding the research process and learning how to get involved can be daunting. Join us for a lively discussion with an exciting panel of survivor/research contributors to hear about their experiences getting involved in research, and learn how you can too!

Learning Objectives:

• Learn the valuable role patients and advocates can play in influencing research from the initial development of the research question to translation into clinical practice
• Learn the importance of being an informed consumer of medical care and developing “critical health literacy”
• Discuss steps that cancer survivors can follow to identify research advocacy opportunities
• Describe the value of incorporating the patient voice into the research process

To find out more you can register here and participate remotely. Apparently it will also be recorded and available later. Go register, sign up for Artemis and learn how your disease could help others in the future.

The Difference With A Good Doctor

This morning I had a wonderful experience having injections in my spine around T8 and T9 where I have a couple of desiccated discs. (Apparently I did something to my back in the previous years - my money is on the time I knocked the wind out of myself in front of the upper ski lodge with a deck full of skiers.) Desiccated discs are common in older adults (70+). Once again I am proving I am less healthy than most people 20 years old than me.

Today my new pain management doctor did the procedure. He was nice and talked to me first. Then he asked me during the procedure if I could feel anything and he would add more pain meds. He asked me how I was doing. He told me if I felt pressure, he would add more pain meds. Afterwards he told me it would take a few days for I to feel any improvement. And he repeated his instructions to me about changing my other medication levels.

What a difference.

My old pain management doctor never asked how I was doing. He never offered to give me more pain meds while doing injections. He would shove in the pain meds and they would BURN! Then he would push in the steroids which would cause a lot of pressure in the area. And he never talked to me about anything else.

I am very impressed with my new pain management doctor. This really show the difference between a good doctor and a bad doctor.

• A good doctor asks how you are doing during procedures
• A good doctor talks to his patients to make sure they are doing okay.
• A good doctor is concerned if his patient is uncomfortable.

When you find a good doctor, keep them.

World Cancer Day - Was Yesterday

I forgot. Well maybe someone said something yesterday but I missed it. Yesterday was World Cancer Day. I blogged about it in 2014 and have since forgotten about it. (Maybe chemo brain?) Its supposed to be a day to debunk the myths surrounding cancer among other things.

But if us cancer people can't remember it, its not going to work. I almost feel like its another 'Hallmark' holiday. I don't think it has much significance to me. Especially when I can't remember it and have to go look it up every year.

I guess its just not working for me.

The Bigger Problem Than Lack of New Cancer Treatments

I constantly read articles on the advent of new cancer treatments. I think they are wonderful. But they are not always instituted.

In 2014, new guidelines started to recommend sentinel node biopsies instead of full axillary node dissections to detect cancer spread.  They are told not to do axillary node dissections (AND) if the patients cancer is under 5 cm and if breast cancer was only found in one or two sentinel nodes.

"Sentinel node biopsies are done on early-stage breast cancer patients to stage their cancer and determine if it has infiltrated the lymph node system, a common signal of cancer spread."

Axillary node dissections (AND) are much more likely to leave the patient with lymphedema and limited arm movement. In 2009, my surgeon did a sentinel node biopsy first to find any malignant cells (which they found) before he went on with the AND (and now I have lymphedema).

In 2005, the guidelines then stated that sentinel node biopsies should be done first and if any cancer is found, then an AND should be done.

But still in 2017, ANDs are done regularly for women with breast cancer.

"In smaller hospitals, particularly in rural areas, many women are still being told they need a full axillary dissection. There are economic issues, geographic issues and education issues for both clinicians and patients..."

So after over 12 years of established practice, the new guidelines are not being followed by breast surgeons.

I think this is a bigger problem than lack of new research to cure cancer. Any new care standards should be more widely followed by doctors and medical centers. Why do we need new research if no one is following it?

A Really Good Reason For Not Eating Tofu

I have been aided in avoiding tofu by the confusion over whether eating soy contributes to breast cancer growth. I really hate tofu. My mother fed it to us as children and I didn't like it then and I don't like it now. I might eat a little bit in my hot and sour soup but I will never order a dish which is tofu based.

But now (finally) we have clarification on the soy or no soy for women with breast cancer:

The issue is eating soy products seems to give women protection from breast cancer. Asian countries where soy products are eaten regularly have much lower rates of breast cancer than the US. But the estrogen-similar stuff in soy products has been thought to contribute to breast cancer growth, especially with hormone sensitive breast cancer.

So the truth was found in some recent research using rats:

"The researchers found that rats that were given soybean isoflavones to eat throughout their lives — in particular, one type of soybean isoflavone called genistein — had improved immunity against cancer. But rats that weren't given the isoflavone until after developing breast cancer didn't have that same immune response to kill cancer cells. Instead, these rats had higher rates of cancer growth and higher rates of recurrence after their tumors were removed."

And more:

"All of the rats were then treated with tamoxifen to kill the cancer. The researchers found that the rats raised on genistein had only a 7 percent chance of breast cancer recurrence after tamoxifen treatment, but the rats that were recently given genistein had a 33 percent recurrence rate."

So if you eat soy all your life, your risk of cancer should be lower and remain lower for recurrence. But if you are diagnosed with breast cancer, don't start eating soy. 

See now I really have a good reason for not eating tofu.

Coping With Breast Cancer with Friends

After living with breast cancer for nearly 10 years, I have some thoughts about how we all cope with it. I know personally I have gone from total, sheer panic to somewhat calm acceptance with a large dose of humor.

Humor has always been my 'go-to' when coping with anything. If I am not cracking jokes, I am really stressed. I mean I sometimes crack really bad jokes when stressed but if I get to the point where I am too stressed, my sense of humor vanishes. That means trouble.

I have noticed that most of my cancer friends do the same thing. We all have kept our sense of humor as we cope with life with breast cancer. We have all coped differently and faced our demons separately but we all have learned to laugh together.

Yes, our demons have been very bad at times. We have lost some friends along the way but our humor keeps us coping.

Living with breast cancer has tested us in many ways and, as each of us are unique, we have bonded together and our bonds allowed is to cope even better. I cannot imagine going through breast cancer without my friends.