Monday, February 27, 2017

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.

Saturday, February 25, 2017

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.  

Friday, February 24, 2017

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.

Thursday, February 23, 2017

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.

Wednesday, February 22, 2017

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.

Tuesday, February 21, 2017

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.

Monday, February 20, 2017

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.

Saturday, February 18, 2017

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.

Thursday, February 16, 2017

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.

Wednesday, February 15, 2017

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.

Tuesday, February 14, 2017

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.”

Monday, February 13, 2017

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.

Sunday, February 12, 2017

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.

Saturday, February 11, 2017

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.

Thursday, February 9, 2017

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.