Saturday, April 22, 2017

The Good, The Bad, and The Ugly

So my life is having its normal ups and downs. There are definitely the good, the bad, and the ugly.

What is good? A whole bunch of things:

  • I actually got enough sleep for a couple of nights. I slept late two days this week which helped. 
  • Spring is actually springing. I planted some spinach and peas. Both are cold weather tolerant. Spinach actually will not grow in the heat of the summer. 
  • I finally see some progress on my SSDI claim. This means I actually heard back from SSDI for more information for the first time in six months. 
  • My husband and I went to the beach for a day last weekend when it was 80 degrees. 
  • Next weekend we are going to have a few days away for fun. 
  • I was given a spinning wheel and am looking forward to learning something new (just what I need a new craft hobby).
  • I have been feeling okay these days. No major pain issues right now. 

The bad: There always is bad stuff. Sometimes its bigger than others. Sometimes its a stubbed toe and others its a complete disaster.

  • Right now I have a friend who might be having some bad medical stuff going on but is in the eternal 'holding pattern' for now. (That is the worst part of any medical crap situation.) 
  • I am not sure if my RA treatment is working. I have more pain issues in my hands and feet. I see the doctor next month to discuss.
  • My knees are pretty bad. I define bad as 'locking up' regularly and taking turns throbbing, aching, and little shooting pains through them. Monday morning I see my knee doctor and should know more.
The ugly?
  • My garden until more flowers start blooming. There are lots of dead things and brown. I need green and colored flowers.
  • My flabby stomach that I can't seem to get rid of.
  • This is not a political blog but I will say the state of politics in the US right now is pretty damn ugly with so much divisiveness. (Why can't people just be nice to each other and stop pre-judging them based on what they think the other is like?)
And so life goes on. There are always nice things and sometimes there are not as good things. We just have to learn to balance them all. Juggling is a necessary skill for all.

Thursday, April 20, 2017

Making Treatment Decisions

A recent article on making dialysis decisions prompted me to start thinking. Basically, just because a treatment is available, do you really want it? Its your choice. I know dialysis is not a cancer treatment but my point is there.

I am a strong believer in that doctors give you advice and how you choose to follow it is your decision. I usually follow my doctor's suggestions with medications and tests and other recommendations. But if something isn't making me happy I'm quickly going to stop it - and inform my doctor's office of my decision.

My quality of life is very important to me. I don't have a great quality of life because my health has taken many things away from me so I am diligent in preserving what is left.

If a treatment protocol is high risk or has a very low quality of life, I would be very hesitant on trying it. Taking the case of dialysis as in the article, if there is no quality of life being tied to dialysis, I think it should be up to the patient to make the decision to continue with it. The same with chemotherapy. If a patient does not want to go through with it again, it should be their choice.

But going back to my thought process. There are all these new treatment options out there. But they are also pretty strong. Strong medications will then have strong effects and strong side effects. So how bad are the side effects if you take this this medication? What will it do for your quality of life?

I think you need to think, and think a lot, before you jump at that new treatment option.

Tuesday, April 18, 2017

Thoughts on Not Blogging

I get up every day and say to myself 'I am going to blog this morning before I do anything else'. As you can tell this hasn't been happening. Why? Well there are lots of reasons

  • I have been distracted by spring time and gardening (finally).
  • I have been routinely over doing things which has tired me out (because I was trying to have fun). 
  • I have been lazy.
  • But the biggest reason is I haven't felt an overwhelming need to blog. My blog was set up to give me a way to express my thoughts on issues relating all my medical crap. I guess I haven't had huge medical crap to deal with right now.
On the plus side is I really have not had horrible medical crap to deal with and have been feeling less stressed about things. Finally spring is here so I can get outside and play in the garden which makes me very happy. But it does make me over do things and then I need to rest. 

My medical crap has receded to the background. I had a month long break from appointments recently and now I am in the middle of another two week break. Not having to go to the (damn) doctor for a week or two is always good for me since I average more than 50 appointments each year (not counting PT - as of now, I have 29 appointments in the first six months of the year).

But I have been doing okay these days. My biggest medical issue is that I have given up on my damn CPAP machine. I can't sleep with anything on my face and that's not going to change anytime soon. But I did hear about a newer option for apnea that might work for me. And it is so low on my priority list that I have given up stressing about it.

So I am enjoying myself for once and not blogging about it. But I should be able to post pictures of my garden as it grows.

Friday, April 14, 2017

Hanging Out with My Peeps

If I take a look backward, I realize that I have the best time hanging out with my cancer friends, or 'my peeps'. Sometimes I feel like I hold back on my health with everyone and more so with people who don't have cancer - a/k/a the people who don't really get it. I mean they try.

I have many friends with varying understanding of what its like to live with cancer. One friend, who has RA and has lost a husband to cancer, is very, very close to understanding the life I live. Then I also have friends who barely know what fibromyalgia is.

Part of it is me. I tend to not be very open about my medical stuff until I am ready to talk about it. The first person I tell is my husband when it comes to medical crap. Then I start telling my family and my cancer friends. My family comes next because they are my family. Then my cancer friends get it.

Every week I go to my knitting group at a cancer support center. We all have cancer in varying states of treatment and health status. We have not known each other too long. Sometimes it takes a week or two for people to open up about their cancer. But we sit there and laugh about life.  We really have a lot of fun. And there is always a little sigh when our time comes to an end and we head our different ways.

I also find that I spend most of time with other friends with cancer. First of all, they are most like to be retired like me and have time during the day (I don't go out at night). Second, we can all relate to our health issues.

So I like hanging out with my peeps and having fun. No offense to everyone else but they are my peeps.

Thursday, April 13, 2017

I Was Thinking

I'm sorry, I know I shouldn't spend time thinking because it can cause all sorts of problems. I know. I should stop spending so much time thinking. I'll think about that for a while.

Anyway, I was thinking because I read an article on the giant Rheumatoid Arthritis Time Suck. When you have RA you spend a lot of time going to the doctor to deal with doctors for RA and then all the time dealing with the side effects of your RA medications. And your low immune system which makes you high risk for everything. And blood tests every 8 weeks. And more and more.

But then I get to add in the fibromyalgia time suck which causes time wasted for pain, resting after exertion, and going to doctors. And the post breast cancer required follow ups with doctor appointments, and trying to avoid lymphedema issues - which can cause all sorts of delays in itself. And the post thyroid cancer doctor appointments, blood work, ultrasounds and more. And for every ailment I can add more time sucks.

Basically if you have an ailment, it also has your schedule. You need to go to the doctor for it. You spend more time doing things if you have any impairments because you move slower. You spend time chasing down prescriptions, dealing with insurance companies, waiting at the blood lab, doctor offices, and for tests (and their results).

Being sick has a huge time suck to go with it. Just think, if you get the flu, you spend a lot of time in bed. But then it goes away and you go back to normal. And the time suck goes away. My time sucks never go away. So I get to waste time (thinking and) in the giant time suck of being sick.

Every ailment comes with a time suck.

Wednesday, April 12, 2017

No Tofu for Me!

I hate tofu. I have never been a fan. And now I have reasons for not starting to eat it.

There has been a lot of discussion on whether soy is good or bad for breast cancer. Now finally, new research has exposed the answers.

  • If you have always eaten a lot of soy your breast cancer risk is lower, and your recurrence rate is also lower.
  • If you have not always eaten a lot of soy, your breast cancer risk is at normal levels (whatever they are but I didn't want to use the word 'worse' when talking about cancer rates).
  • If you have not always eaten a lot of soy, starting to eat soy after a breast cancer diagnosis, doesn't help you and could even cause your recurrence rate to be not as good.
So, I hate tofu and will never be a fan. Now because of my medical history (one of the few good things due to it) I never have to consider eating it. Here's to a tofu free life!

Tuesday, April 11, 2017

A Care Plan?

A long time ago, back when I was in a support group weekly, I was offered a care plan to complete with my doctor to make sure I kept track of my cancer treatment.... It was several pages that were copies of copies of copies and difficult to read. I got the point but decided to skip that.

There were several reasons (besides starting with the s-word) that I avoided it.

First of all, it only covered your cancer diagnosis. It didn't include other issues, like additional cancer diagnoses, and other ailments. It only covered one cancer treatment.

Second, I keep better records than my doctors. I started a spread sheet of my medical expenses for tax purposes to see if we could deduct them - and at least get credit for all the miles traveled. This has all the information I need to track my treatment and tests and appointments.

Now a new study (because we need new studies to keep researchers busy) says that they are surprised that very few breast cancer people have cancer care plans. This surprises them? I am surprised they are surprised.

They also expect the patient to sit down with their doctor to write up their plan. Does your doctor have time to sit down and fill out a several page form with you? I'm not sure mine does.

Personally, I am happy to keep track of my treatment. I usually go to the same hospital and once I give them my record number they can pull up all my ailments, medications, and allergies. I do take medical information with me when I travel in case something happened to me and I couldn't go to my regular hospital.

But seriously? I don't need a lot of paper work to drag around for one ailment.

Sunday, April 9, 2017

Another Try At Being A Normal Person

Yesterday wasn't the greatest day. Between going to the walk in clinic for my stupid tick bite and the antibiotic that upset my stomach, I wasn't as productive as I might want to be. So today I plan on attempting to be a normal person again. It shouldn't be that difficult but you never know with me.

My plans are to warp my loom for another project, meet a friend at noon to go see another friend's new garden center, and then maybe one more errand when I get home from that. Any bets on whether I can make it?

I just get very frustrated by trying to be a normal person and ending up spending a day or two or three recovering from what anyone else could do at the drop of a hat. I spend more time recovering from doing things than actually doing things. Grrr.....

Saturday, April 8, 2017

Being High Risk

Normal people get exposed to something and they get told 'call us if there are any changes in whatever it is that is bothering them'. They get sent home basically with a 'take two options and call me in the morning'.

Me? I'm not a normal person. With my medical history? Of course not.

We live in a wooded area with lots of deer and mice outside. Our two cats like to go in and out and in and out and in and out. They bring us home presents and usually leave them outside. But sometimes they don't.

Yesterday I came home from the gym and took a shower. The cats went in and out and in and out. I decided it was time to treat them for fleas and ticks - the beginning of the season. They were mad at me because they don't like getting the drops on the backs of their necks. After I dosed him,  I picked up Evil Kitty and held him for a minute so he would stop pouting.

Fast forward to dinner time and my husband saw a red spot on my stomach.... What was it? A tick. Of course, I get a stupid effing deer tick.

I decided to go to the walk in clinic this morning to make sure it wasn't a big deal. So if you get a deer tick bite, it is more concerning when the ticks are attached for more than 48 hours. My tick was on me for about 4 hours at most.

Because (of my medical history) I am high risk (for everything), I was also given the basic anti-Lyme disease antibiotics in a single dose. 200 mg of doxycycline which was enough to make me nauseous.

So now I get to wait and see if I get Lyme disease. Most of the symptoms would be exactly what I have already - joint aches and pains, stiff neck, etc. So the one telling one for me will be chills and a fever.

And the antibiotics made me nauseous.

I'm so excited I can't wait!

Thursday, April 6, 2017

Sleep Problems, and Solutions

I might have mentioned before that I have problems sleeping. This isn't new. I have had problems sleeping since my 30s. But its only recently that it has gotten much more complicated than just a bit of insomnia. Add in things like:

  • Back pain so it can be really hard to get comfortable to sleep at all.
  • Fibromyalgia which causes both fatigue and insomnia
  • Rheumatoid pain
  • Sleep apnea and an evil CPAP machine which keeps me awake
  • Should I go on? I can....
In the past, I have been known to get up and wash the dishes and clean the kitchen in the middle of the night because I couldn't sleep. Trust me, I have been all over the house doing things because I was wide awake. 

In recent years, I have been offered medications to help me sleep. When diagnosed with breast cancer, as most other patients, I was given ativan/lorazepam for anxiety which helps sleep as well as anxiety. More recently I was given trazadone which has helped. But not as much. 

My new pain management doctor gave me a new sleep medication which he says promotes more natural sleep. It is tizanidine which is also a muscle relaxant. So far it seems to help with sleep and some other issues. (He felt that too many of my meds were in the SSRI family and when he started changing around my meds, I ended up with too much SSRI going on and my pulse and BP were way too high.)

Anyway, I digress. I have lots of sleep problems. In addition to medications, we have a new bed where we can raise and lower the head and the foot.

So where are we? 

With a new bed and lots of pillows I can get comfortable more easily. Pain management has helped control pain. I have given up on the CPAP machine because I can't sleep with it for more than an hour. (I know this will disappoint my doctors but I am okay with it and understand the ramifications.) My new meds help a lot. 

Currently I wake up once at night between 230-330 am to pee and then go back to sleep pretty quickly. This works for me. I feel rested for the most part. 

My message is if you have problems sleeping, keep trying to figure out why you can't sleep and don't give up. It may take a while but there should be a solution somewhere.

Tuesday, April 4, 2017

Note To Self: Stop Playing Doctor and Self Diagnosing

I have no medical training whatsoever past what I have learned from my doctors in their appointments. So why do I waste any time trying to figure out what is wrong with me? Last night I was lying in bed and trying to decide what was causing the pain in my ankle? Was it referred pain from my knee or hip? Or is it a new pain and what could be the source? Is it worthy of going to the doctor any sooner than my scheduled appointment at the end of the month? I really don't want any more doctor appointments but pain is pain.

And am I trying to self diagnose myself so my doctor can just confirm what I thought it was?

I have no idea what is currently wrong with me this time. I know it isn't that serious and I am not dripping blood so I am not rushing to seek medical care. But I wouldn't mind knowing the source of this....

For all I know my doctors are going to say something 'helpful' like "I'm not really sure what the cause of it is, its probably from either your RA or fibromyalgia and there is no real way to tell." I get a lot of that.

What I really just want is a cure for everything and since my doctors have yet to find the magic wand with that magic cure, so I am trying on my own.

Monday, April 3, 2017

Treatment Changes

As I near a decade (how the hell did that happen?) since I was diagnosed, I have noticed how much breast cancer treatment has changed in the ensuing years. When I was diagnosed, it was slash, poison, burn. There was potential new treatment in the future but it was looming years ahead.

I remember being in a support group meeting and we were all overjoyed to be told that cancer was now being treated as a chronic as opposed to being a terminal disease. That was a great shift in the treatment protocol in our minds. We still mentally held our hands as our friends went through chemo, radiation and surgery. We hoped for treatment advances that were 'promised' somewhere off in the hazy future.

Now all of a sudden, I realize that I know several women who were treated for their late stage breast cancer, not with surgery, chemo or radiation, but with oral treatment. They are treated with Femara (letrozole) by itself or with Faslodex or, most recently, Ibrance.

Also in the past, Herceptin was raved about as a new and safe treatment for Her-2+ patients. And now there is even a second option of Perjeta for those women.

While progress has been made and I still look forward to more progress. I want cancer to be treated as an acute disease - meaning it comes on, is treated, and almost everyone is cured and goes on with their lives.

Sunday, April 2, 2017

Emotional Stress

About a year ago, I met a young woman who had had cancer since age 18 when she was diagnosed with an inherited pancreatic cancer. She had never thought she would make it to 40. But last year she did make it to 39 so she had lots of hope. Until last fall when everything changed.

In the fall, she found out nothing more could be done and she would be on hospice until the end. She got hospice at home and slowly began to decline. All of us who knew her were on pins and needles waiting and hoping. We got periodic updates on how she was doing. She was losing weight, she was not eating much, she wasn't getting out of bed much.

Then we would talk to her and she would tell us about how she is doing. She sounded fine. She admitted to being thinner and not eating much. We would hear she couldn't really get out of bed much anymore.

We realized that (a) she has been on hospice for six months, and (b) she should be close to her 40th birthday - something she never thought she would attain. Who ever thought someone would be on hospice for six months? Most people I know who go on hospice, last a few days or maybe a couple of weeks. Not six months!

In the meantime, we are all very happy she is still with us. We want to confirm the exact date of her birthday so we can make sure we celebrate it. But seriously, we are on pins and needles. We knew her too well. We knew about her cancer struggles and her family issues. She doesn't live close enough to any of us so we can just drop by. Phone contact is iffy because we don't want to wake her and she can't talk if her caretakers are there - which we never know.

How are we going to feel when the end happens? We like her and want the best for her. But this long decline is getting harder and harder to deal with. We talk about her and we care. Because we care, the emotional stress is building, the longer this she lasts.

With cancer, you have to deal with your own emotional stress. And you make new cancer friends once you are armed with your diagnosis and you share your roller coasters together. You share your emotions.

As time passes when I know I have a friend who is waiting for the end. She isn't fighting a battle or being a warrior. She is a young woman facing a terminal diagnosis which is nearing as each day passes. And as I am a friend, I am sharing it with her. And sharing her emotions too.

Saturday, April 1, 2017

What A Beautiful Day!

After I stretch, I'm going out for my last long run before the Boston MArathon. I'll stick to a few shorter runs between now and then. I did well enough int he New York Marathon two years ago to qualify for Boston. Next year, I might run London again or maybe switch to tris...I mean why not, I'm doing pretty well these days.

Tomorrow my husband and I are going to clean out the garage and power wash the floor. We have a lot of heavy stuff to move out but I think I can do it. I'll probably paint the dining room later.

Next week, I'm going to focus on weight training and do the spring yard clean up. Its full of debris from the winter's storms.


Today its snowing to beat the band and my back hurts..... Did I get you? I'm no healthier than I was yesterday - which is not very healthy at all.

"Ma'am, on a scale of one to ten, with ten being the healthiest, can you tell me how healthy you are?"

"I believe I'm a negative 37....."

Thursday, March 30, 2017

My Health Is Trying My Patience

What if I could be normal and when I tried to be a healthy person I could actually do it without having to spend time recovering?

Yesterday by the time I got home I was exhausted. I had had a very long day. What did I do? Got my hair cut, went to the gym and a doctor appointment. I had to lie down for a while. I left my house at 1030am and got home at 430pm. Six hours?

My original schedule for yesterday included a 930 appointment at the gym. I decided that would probably be too much for me and rescheduled. I knew I had down time during the day and was going to go visit my parents for a bit. But then I got the brain storm to shorten my day. Its one thing to skip the gym or the grocery store because I was too tired but its another to skip a doctor appointment.

So anyway, my health is seriously trying my patience and I am sick of fed up with it. If I can't manage six hours out of the house, including a good hour sitting down, what am I supposed to do? Just stay home and rot? Grrr.....

Call me frustrated. I think I can manage today. All I have to do is go to my knitting group and come home. A much shorter day.

Tuesday, March 28, 2017

A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

  • surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
  • dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.
I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

Monday, March 27, 2017

Managing Weird Symptoms

So we all get these weird feelings sometimes. Something starts aching, or tingling, or twitching, or pinching, or just not feeling right. We start having little debates with ourselves (where it is perfectly acceptable to talk to yourself, ask yourself questions, and answer yourself back) how long has it been going on, is it that big a deal, do we want to go to the doctor, do we need to get some medical care (if dripping blood, the answer always apply pressure and get to the ER stat). Then we try to make decisions on what to do and when to call the doctor, or not.

Eventually, it goes away or gets better (with or without medical care) and we move on. We might have a scar or a bottle of left over prescription pills and or a pile of bandages we stick in the back of the closet. Or do we move on, can we move on?

I have found that before my second cancer, every medical misadventure just went by the wayside. I didn't overthink anything because it wasn't really that important. Well, I do admit to asking about potential cancer crap because of my first diagnosis once in a while but I never really stressed.

Now I have to institute the five day and two week rules to prevent over-stressing and too many doctor appointments. The time limit means if something is not getting better within the time frame, its time for a doctor. Significant ailments, like extreme pain, very high fever get the five day. Anything else is on the two week rule. If I make myself wait, usually I end up not needing the doctor, or so I make myself think.

Part of relearning to be a semi-normal person after cancer treatment is learning how to handle potential ailments. I cannot let myself fall into the trap where every new symptom is a really BAD thing.

I also have learned that I need to learn to tell the story about any symptom when I get to my doctor (my old PCP taught me this). I shouldn't go to the doctor and say 'this hurts'. I need to go to the doctor and say 'this hurts, for this long, when I do this, and this is what I have done to try to deal with it'.

But with two cancer diagnoses, my tolerance for symptoms is very different. Somethings I tolerate a lot of and somethings I tolerate none of. Its my body and I get a lot of the same reaction from medical professionals - I have a lot going on medically and am not the run of the mill patient. So its up to me to make sure the medical people understand what I need and how to make me feel better (if possible).

Okay, this is a long and whiny post on me and my weird symptoms and how I deal. Frankly, I just want to be healthy again...

Sunday, March 26, 2017

Making Breast Cancer Friends

You have breast cancer, I have breast cancer, we are now friends.... For life. That's just the way it works.

It also works with people with other types of cancer or other chronic ailments. There is a bond.

Stop by the chemo waiting room and you will find it full of people who become friends because they share a common bond - cancer.

Before breast cancer, I wasn't as open about my health (and I was a lot healthier) and I wasn't as quick to jump on the cancer bandwagon and make new friends. But now, its different. If you are open about your medical crap with me and we have similar diagnoses, we will be instant BFFs.

Many others do the same. I hope even more will.

Friday, March 24, 2017

Damn The Mutations, Full Speed Ahead

So now they want to tell us that cancer is mostly the result of genetic mutations, as opposed to other factors. I'm not sure how much of this I want to believe but I'll just say 'damn the mutations, full speed ahead'.

Cancer causes are supposedly:
  • 66% - mutations when cells replace themselves
  • 29% -  environmental factors
  • 5% - hereditary factors
So can we stop blaming our parents and our bad diets, and just assume none of it is our fault? Probably not.

As a normal part of life, cells divide and multiply and little mistakes happen all the time. Its just that sometimes they turn into cancer....

"Lifestyle factors still matter for cancer prevention.
Just one mutation is not sufficient to cause cancer -- typically three or more mutations must occur, Tomasetti noted. If, say, your cells miscopy DNA and so cause two random mutations, a third mutation is still needed. Obesity, smoking, lack of exercise and poor eating habits might supply that necessary third gene defect that tips your body into a disease state."

So go eat a salad, quit smoking, and go to the gym. And for those of us who were already doing all of those and still got cancer, can we please just blame bad luck and not blame ourselves?

Thursday, March 23, 2017

I Am Rebelling

Sometimes I need to let my inner rebel out and stop being such a good patient. I usually try to be a good patient (and go to my appointments, take my meds as prescribed, talk to my doctors honestly and generally do what they want me to). But not right now.

Last fall I was told I have sleep apnea and my doctors want me to have a CPAP machine for sleeping. I got my CPAP machine and hate it. I can't stand having anything on my face while I sleep. I am on my second mask and still cannot deal with it. I wake up and want to rip it off my face. If I sleep with the mask on, I don't ever feel rested and have the weirdest dreams.

I went back to my NP for the sleep department yesterday to talk about how I am doing with my (damn) CPAP machine. She said that because of the problems I am having, I could go to a plastic surgeon and they would do some kind of 'adjustment' and then I wouldn't need a machine. (The idea of any kind of surgery like that makes my skin crawl.) Since I have rheumatoid arthritis, no one wants to operate on me because I will not heal well. So we nixed that idea.

My next step is to go see the sleep clinic for CPAP mask for desensitization therapy to get used to the (damn) mask. I am not sure this is going to work for me. I have already tried everything from taking naps with the mask, wearing it when not trying to sleep and just resting, but its not working.

If I fall asleep with it, I end up taking it off shortly afterward because I can't sleep with it. And the whole point of a CPAP machine is to sleep better. I haven't slept better with it at all. And I got it at the end of January.

This is a long way of saying that, while I am willing to actually try a little more to get used to the (damn) mask, I am running out of patience and am not going to try that hard based on two months of treatment so far. Frankly, I do not expect the machine to work for me at all. So my inner rebel is saying, while I will give it a try, I am done making a giant effort.

The (damn) mask has been hanging on the back of the bathroom door for a couple of weeks. It is staying there until they explain the desensitivity therapy to me and I get to try it.

I know apnea leaves to all sorts of issues including fatigue, sleepiness, weight gain, snoring, etc. I also know that I really hate the (damn) mask.

Monday, March 20, 2017

What Do You Want To Be When You Grow Up?

I always hated that question: what do you want to be when you grow up? Or, the job interview variation, where do you see yourself in five years?

I admit to asking it of potential candidates when interviewing them to find a new employee. I did ask it, not because I cared what they wanted to be or where they saw themselves, because I wanted to see how they responded when put on the spot.

I digress. I finally have an answer to what I want to be when I grow up. I admit it may have taken me a bit. But now I know.

I want to be healthy.

That's it. Is that too much to ask? I don't see it as being unreasonable. I think its a great goal. To be healthy.

Sunday, March 19, 2017

The Really Bad Reason For Decline in Cancer Rates

There is a really bad reason for declining cancer rates. That is when people lose their health insurance and stop going to the doctor. New research has recently found that as people lose their jobs, they lose their health insurance and stop going to the doctor so fewer cancer cases are diagnosed.

"As the country plunged into recession between 2008 and 2012, something unexpected happened: An earlier small decline in the number of new cancer cases became a much bigger one."


"A 2015 analysis in the Journal of Cancer covering the years from 1973 to 2008 found that the incidence and treatment of cancer in the United States dropped during recessions and with increased unemployment rates.

During such periods, patients were perhaps more likely to forgo tests for early detection or ignore symptoms due to financial consideration, the researchers suggested."

Unfortunately this does make sense. If you lose your job and can't afford to pay Cobra coverage, medical visits will probably cease. If you don't see a doctor, you can't get diagnosed with anything. 

[This isn't a political post but now our new president wants between 14 and 24 million people to lose their health insurance. (Just saying....)]

This shows the value of health insurance. And its not just cancer. If you don't go to the doctor there are lots of other things that can also eventually kill you. If you don't have insurance, you really want to be careful about how you are feeling and if you do feel something is wrong, find some  place, any place (besides an Emergency Room) to get checked out. You are your best advocate.

Damn, the politicians.... But its not a political post.

Saturday, March 18, 2017

Back to Breast Cancer Stuff

(So my plan is coming together and my life goes back to reflecting on breast cancer crap.)

Earlier this week, the FDA approved a new medication to be used with Letrozole (Femara) or other aromatase inhibitors for hormone positive metastatic breast cancer patients. This medication (which I can't pronounce and just think of it as the 'kis...') is called Kisqali (chemical name: ribociclib). It works similar to Ibrance... Not that that means much to me but as a reference.

My real concern is the cost. Ibrance costs $9850/month for treatment. Not cheap. All new cancer treatments seem to cost so much. 

But I am pleased to learn that Novartis has developed a flexible pricing plan for Kisqali;
"The med—a first-line treatment for HR-positive, HER2-negative breast cancer that will compete with Pfizer’s Ibrance—will roll out as early as Tuesday under a flexible pricing structure, the company said on a conference call following Monday's FDA approval. A 28-day supply of the 600-mg dose will cost $10,950, while the same supply of the 400-mg dose will go for $8,760 and the 200-mg dose will run at $4,380."

My hope is that now there will be some price competition between the two. Not that many stage IV cancer patients do much price shopping while looking for treatment but maybe the insurance companies will.

However, the best thing is that more cancer drugs are being developed and are finally hitting the market. 

Friday, March 17, 2017

Forming the New Plan (Part 3)

So, my new plan is forming. I have done some thinking and some research. I also talked to my therapist and she gave me a few ideas. My biggest weakness is that I cannot over-schedule, over-commit, or over-stress myself. I need to pace myself.

I have found some events to attend - a gardening as therapy event at the library and the next monthly Garden Club meeting. Of course they are only two days apart. I hope to get my husband to go to the first one with me as it is on a Sunday. He might.

Going forward I hope to join the garden club, but their year runs September - June. They only have two more meetings this spring. I am also going to keep my eyes out for more events at the library.

So if I find an event or two there each month, add the garden club meetings, that will get me out of the house more. I should actually learn some things there too.

That's my first step. I also plan to reach out to the Senior Center to see if I can do something there. My therapist suggested starting a knitting/needlework group there. They already have a knitting group that meets at the exact same time as my other knitting group at the cancer support center.

However, I am not sure I want to commit myself to another weekly obligation. Well, its not that I don't want to commit, its that I am not sure I am physically able to commit to one. (See that's the problem....)

Starting in April, gardening season will begin and I can fill my time outside. No I can't plant anything until mid-May but I can plan and prepare. I have already started my snapdragons inside.

Then I have a friend coming to visit in May. I will go to the beach to visit another friend in June for a few days. More travel over the summer.

This is a start. The plan will continue to come together.

This is me getting my mental state together again and forming a new plan.

Wednesday, March 15, 2017

The Bad Plan (Part 2)

After moving and I came up with my 'plan' on how I would adapt to moving to a new community and stop working at the same time. But it doesn't seem to work as well now.

For the first months after we moved, I was really busy. I worked on our new house. I painted rooms, I started gardening, I got us settled in. Once you unpack you still have a lot more settling to do.

My house painting skills have improved but I go very slowly. It took me two weeks to paint one hallway. I did one side one week, and the second side the next. I spackle one day, sand the next, wash the walls, tape, and then paint - primer and two coats.... I have to break it up because i can only work for a short period before needing a break. The living room took three weeks.....

I still have more painting to do - dining room (2 walls), kitchen (2 walls), and half the basement. I also have to go back and fix some areas..... This could take me months. I promise I will get to them but some days I look at the amount of exertion required and decide I am simply not up to it.

Therein lies my problem. I get too tired. I can take days to recover from too much exertion. For example, we went some place and had to stand in line for 45 minutes. It took me 3 days to recover. If I go out for a few hours and do anything that requires standing, I come home and lie down. It is not uncommon for me to come in from the gym and the grocery store and be too tired to put away all the groceries, or even carry them inside.

I also want to garden more. Last summer, my husband worked very hard and doubled the size of our garden, significantly reducing the amount of lawn. Then we had a drought so gardening came to an end.

I think part of my problem is winter is long and it greatly limits my activities outside. I do my weaving and knit inside year round but a little fresh air now and then is appreciated.

Right now I just want winter to end so I can do some gardening. In the past, I used to be able go out and enjoy winter - hiking, skiing, snow shoeing, etc - but those have all come to an end.

As winter has dragged on, I have spent more and more time inside, by myself. My husband works full time. I keep meaning to go up to the senior center and meet more people but its 20 minutes away at the farthest end of town. I am a little young for the senior center (I can't join for five more years) but almost all their activities are during the day. I am not up to going out at night.

I have upped my volunteer work and am doing more with the local cancer support center. But I do it all at home by myself.

My plan is falling apart because I spent much more time by myself at home than I ever expected. I also have not met as many new people as I thought I would. You not easy to meet the neighbors if its winter and everyone is hiding inside. Most of our neighbors work full time and have children. I have neither in common.

I have maxed out my knitting and weaving and will continue. This is so I have enough for my craft fair months in the fall. But that's not very interactive.

I also have been having some health problems which further limit my life. My formerly good left knee became my new bad knee a year and a half ago. My formerly bad right knee which is now my 'good' knee and I have been overusing it to compensate for my left knee. It has decided to start locking up and I have already had some fluid drained to help but it will need more work.

On top of that, I have been told I have apnea and need a CPAP machine. So I got one and the mask was not right for me so I had to get a new one. The new mask still doesn't allow me to get a good night's sleep.

Last night for example, I was exhausted and took a sleeping pill. I slept for about 3 hours without my CPAP on, woke up and put it on for a couple of hours. I had the weirdest dreams and felt very restless. I gave up about 330AM and have been up since. (I think I need a nap.)

So the bad plan includes too much isolation, loneliness, and seclusion than I expected. I need to learn better to balance what I can and cannot do with getting out more. I also need to get more sleep period. Lack of sleep can be very serious and it also compounds other issues - both emotional and physical.

I am working on a new plan. But more to come.

Tuesday, March 14, 2017

Things Are Not Working As Planned

Sometimes, things just don't go as you wanted or expected. Its a fact of life and we need to learn to cope, change directions, and move on.

In the grand scheme of things, my original plans were that would I grow up, go to college, get a job, a career, married, kids, retire to a life of happiness and world travel. Well, we know what happened to that. I got as far as 'go to college' when my health started taking over my life. One little cancer diagnosis has a big emotional impact and it took time to get my life back together.

So I regrouped and started over at college, etc. The job and career went okay. I did eventually got married but it was too late for kids. (We didn't even meet until we were in our forties.) That's fine. We bought a house, traveled, had fun. But then my health took over.

I did get laid off just before my breast cancer diagnosis, and I had already had a hysterectomy because of other health issues since getting married two years before. (And no, getting married did not cause my health to fall apart.)

I regrouped again and started working part time. I got better and got up to two part time jobs that kept me busy between 35-40 hours each week. I was enjoying myself with some travel, some crafts, and mostly keeping my health in check... But not completely. My back was bothering me more and more. That went on for about five years. But I was doing okay.

Then, I was diagnosed with both rheumatoid arthritis and fibromyalgia. Both of which are responsible for pain and fatigue and greatly limited my abilities to do much. Neither of which have a cure and rheumatoid is definitely progressive. In six months from diagnosis, I had cut back working to one job at about 15-20 hours each week. Over the next three years, I cut back more and more until I finally reached the decision that I really physically could not work any more.

That was a financial hit that was hard for us. When we purchased our house, we did it based on what we needed at the time and could afford. Our house was going to be our forever house. But because I wasn't working in Boston, never mind at all, it was clear that we did not need to nor afford to live in such an expensive area. And I really needed fewer stairs in my life. Our house was a Cape Cod with bedrooms on the second floor, kitchen etc on the main floor and laundry in the basement. I would sit in the living room and ask myself 'if I went upstairs, how to could I limit the number of times I needed to go back up stairs, maybe not back up stairs until bed time.'

So we came up with the idea that we would move to a one floor house and cut our expenses. That would solve two problems at the same time. It would allow me better quality of life and loosen up our finances.

While we were house hunting, I realized that I needed a plan for my life after we moved. I needed a way to transition from working to being more home bound that I needed to figure out what I was going to do. Our new house is probably 25 minutes away from 'everything' - doctors, gym, family, etc. I decided I could work with that provided I had a plan.

I came up with a plan. Three days a week, Monday, Wednesday, and Friday, would be my 'gym, doctor appointments, family visit days'. The other two days, Tuesday and Thursday, I would not drive down to our old neighborhood and do other things in the new neighborhood. I also wanted to see if I could find a cancer support center to volunteer, allowing me to feel like I was 'giving back' and filling my time. I did find a place and started a knitting group. I go every Thursday afternoon and have made new friends. Tuesdays are my day at home and when I can meet friends for lunch or other adventures.

I like my life for the most part now. It works pretty well. I go to the gym three days a week and to my knitting group. I see other friends for lunch. I go to the library and am learning my way around our new neighborhood. But somethings are not working as planned.
[Part 2 is coming]

Saturday, March 11, 2017

Okay, I Haven't Been Blogging About Breast Cancer

I just don't blog about breast cancer as much as I used to these days. Why? Because I like to pretend it will never come back and bother me again. That is the honest answer.

When I was diagnosed with breast cancer, I lived the all breast cancer all the time channel. Slowly over time, I managed to tune out for bits and pieces. Now I am trying to pretend cancer will never come back and bug me bite me in the ass again. I am pretending because I can tell you that with cancer twice in my life there are not many chances it won't come back again. The odds are not with me.

Since breast cancer, or the mid 2000s, when my body started developing so many bullshit  ailments, I have found that it is possible that once you have cancer, and even if it doesn't kill you, no one wants to talk to you about any potential research. They also try to pretend they do not feel sympathy for you. They actually pity you because you are pretty untreatable for normal ailments.

I am not depressed. I am really annoyed that my ailments suck up so much time out of my life. I would like to pretend I am healthy but its not going to happen.

I think my real diagnosis is 'cynic' Or more likely bullshit cynic. But its not cancer.

Friday, March 10, 2017

Math Class is Important In Determining Your Cancer Prognosis

Who knew math class would be so important later in life? Here's the problem: You get a cancer diagnosis and your doctor starts spouting numbers at you. You survival rate is this, but if you do this treatment it could be more like this. All of us sit there in a daze looking at the numbers and blindly staring at your doctor and trying to make a decision.

If you are lucky, your doctor says 'take all these numbers with you and go home and think about it'. If you are unlucky you forgot all the math you ever took and can't decide if a 60% survival rate is better than a 40% death rate. And if you are afraid of math, skipped too many classes, or just hate numbers, you get really stuck.

However we have now medical research to the rescue as this is has become a recognized issue:

"Many of the toughest decisions faced by cancer patients involve knowing how to use numbers – calculating, evaluating treatment options and figuring odds of medication side effects.

But for patients who aren't good at math, decision science research can offer evidence-based advice on how to assess numeric information and ask the right questions to make informed choices."

So there is a bunch of research that was done and you can go read it all. In my mind, what it boils down to is this (and write everything down):
  • Ask your doctors for the numbers
  • Ask them to explain what they mean without using numbers - is this better or worse than average?
  • Ask about the risk in real numbers, not just in comparison. If something is 0.3% and its doubled, that is still a low risk. 
  • If there are too many numbers, ask your doctor to tell you what are the two best options and base your discussion and thought process on those.
Finally, take a number friendly person to go with you and explain all the numbers to you.

And stop worrying about all those missing math classes and forgotten algebra so you can help yourself determine the best treatment protocol for yourself.

Thursday, March 9, 2017

I Need A Vacation

After a lot of deep thought, I need a vacation. I mean a real vacation which does not involve medications, doctor appointments, and any aches and pains. I would prefer it include a beach, warm sand, and the feeling of health.

Just a thought.

Wednesday, March 8, 2017

Why Bother?

For some reason I have had a similar conversation with different women on the same topic: why take tamoxifen or aromatase inhibitors after initial breast cancer treatment. Aromatase inhibitors are Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole)

The conversations all boil down to:

  • What if I get side effects? They have heard they are awful and could cause them some real problems. But if you don't even try them how will you know if you will experience the side effects?
  • What exactly do they do? They don't really understand that they would reduce their recurrence risk by being on them
  • Why do I have to be on them so long? It used to be five years and now new research has come out to say ten years is better. And more research is going on that may lead to even longer treatment periods
[As I write this, there is a commercial on TV for Botox for migraines. Botox is botulism, which is a very nasty germ...]

I have had friends who do the same thing with their medications.They over think them and won't take them because they have heard that the side effects might be bad. Or the withdrawal from the drug could be bad. 

You won't know if you might get side effects if you don't try the medication. And you won't get the potential benefit from the medication if you don't take it. How is your doctor supposed to treat you if you won't even try their recommended medication?

Tuesday, March 7, 2017

Once Again I Wasn't The Patient

And it was nice. I went to visit my brother for the weekend. And didn't really see him. He had a kidney stone (and a lot nastier word to describe it) that caused him intense pain.

I did get to go to Lowes with him to get parts of his upstairs sink. I also ran and emptied his dishwasher twice. Drove his children all over the place and visited him in the hospital. I fed his cat several times. I walked his girlfriend's dog a bunch of times - including in a snowstorm. I let the dog hog the bed one night and then I let the cat snuggle the next nights. I had dinner with his ex-wife and two of the children one night. I also drove 7 hours to see him and then 7 hours home.

However it was fun. I am glad I went. But because I didn't see him much, I will go back out and visit him later this spring.

Honestly it was nice that I wasn't the patient for once. I feel like I am always at doctors or hospitals. (Today I have my 15th doctor appointment of 2017.)  But it was a long drive.  I find it very different for me not to be the patient - the one the doctor wants to talk to. They couldn't care less about me and I like that part. There are no questions about my numerable ailments, pain levels, or anything. I can be part of the furniture. I think I need less time with medical people.

Friday, March 3, 2017

What An Oncologist Should Not Say to a Cancer Patient

We hear all about good doctors and not so good ones. But every so often we hear about the one's you really do not want.

Yesterday someone told me about the recent visit to her oncologist for her breast cancer treatment. She brought her sister with her for moral support and to help her out. I think she said her sister asked the oncologist something about that after chemo the tumors would be gone. And the oncologist replied with 'unless there are any other tumors'. I don't remember the exact words but the point is NEVER say that to a cancer patient.

Seriously, what was she (the doctor) thinking? You want your oncologist to be full of reassurances that after this nasty brutal treatment you endured that the chances are pretty good that you are on your road to recovery. Yes, we know that you can get more tumors at any time. Just because you are treated you are not out of the woods (ever). If that was my oncologist I would be shopping for someone else.

So if your oncologist says anything like this, run, don't walk, away and find a new one. Clearly that doctor doesn't quite get it.

Thursday, March 2, 2017

Some Kinds of Cheese Can Cause Breast Cancer - Really?

Okay, I am done. I do not care what about any more news about what can or can't cause breast cancer. I am done. The latest info is that consumption some kinds of cheese can cause breast cancer. That would be American, cheddar, and cream cheese. I never eat American cheese - because its basically 'fake food' - but I probably make up for that in the amount of cheddar and cream cheese that I eat.

But that's it. I am done. I quit smoking because it causes cancer (and it smells). But that's it. I no longer care about what might cause cancer. If I listened to all the advice that is out there, I would be living in a cave existing on organic food and distilled water, staying out of the sun and away from any thing that could be carcinogenic.

I love cheese. I love good cheddars, I love a toasted onion bagel with cream cheese. I like the smelly soft cheeses. I love blue cheese. I love feta cheese, especially on a Greek salad. I want to learn how to make my own cheese. I am not going to stop eating cheese. And that's it.

Why don't they just tell us that breathing causes cancer and we can all hold our breath for the rest of our lives.

Wednesday, March 1, 2017

I Am Not A Warrior

I cannot begin to tell you how much the tv commercial for the Avon 39 annoys me. "Warriors Wanted" is so awful on so many levels.
The woman in this ad who is the 'warrior' doesn't look anything like your typical breast cancer patient. She is too young and looks too healthy. Maybe she is supposed to be walking for someone else. But sorry no. Also, wearing a low cut tank top is not the best attire for a long walk. You want sun protection and a hat. I think the Photoshopped 'pink' does nothing for her as well.

Finally, the whole idea of being a warrior is so out of touch. For me it has the same implication of the s-word. There has been a lot of push back from the breast cancer community on the terms used to describe people with cancer. The s-word, and all the 'fighting' terms are not appreciated by many people with cancer. And they are all a bunch of labels to me anyway.

I think they need new copy writers to come up with new terms that are acceptable to the cancer community.

Tuesday, February 28, 2017

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.

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.

Wednesday, February 8, 2017

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

Tuesday, February 7, 2017

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.

Monday, February 6, 2017

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.

Sunday, February 5, 2017

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.

Saturday, February 4, 2017

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?

Friday, February 3, 2017

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.

Thursday, February 2, 2017

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.

Tuesday, January 31, 2017

I Don't Care if People Know About My Cancer History

I used to hide the fact that I had cancer. There are people who knew me for decades before I told them about my thyroid cancer diagnosis. When I was diagnosed with breast cancer I was a bit more open about it but I still kept it private to an extent.

I think I cared more about it when I was working full time. I didn't want any potential employer to know that I had cancer because, even though people are not supposed to discriminate they do. If you are looking at two potential employees who have the same credentials, the one with a history of cancer will probably not be selected because they might 'get sick again'. This is a reality all of us cancer people face regularly.

Now I don't work any more. I have told more people about my cancer history than not. I don't really care if people know. I'm am doing okay these days mentally so I am not stressed about it.

My cancer history, and other chronic medical crap, isn't going away anytime soon so I just need to be me. Hiding it doesn't benefit anyone. Talking about it and recognizing it as the part of my life, that it is, is much healthier as far as I am concerned.

Monday, January 30, 2017


Where does the time go? I was looking at my calendar yesterday a few weeks back and I had so many plans for January. Now I have to shift all those plans to February. Or the rest of the basement and the dining room will never get painted.

The biggest plans for this week are for devices:

First I am getting a CPAP machine today. I am not looking forward to it. I have no idea if I will be able to sleep with something on my face. But if it makes me sleep better I am happy. Sleeping better can help you lose weight and feel rested. I would be happy with either result. I get the machine today and have to pay a total of about $200 over the next 9 months to pay for it which isn't bad. But if it doesn't work out for me I can return it.

The other device is a mini TENS machine for pain relief. Yesterday, I was a sucker and fell for a sales pitch at a Home Show for a Magic Massage Ultra from Enovative Technologies.
Its tiny. It comes with little pads that I can put on my body anywhere it hurts. It seems to have helped a bit already. I got a deal but I do feel like a sucker for falling for a sales pitch. But if it can help me reduce pain in areas, I'm willing to try it.

It even came with 'slippers' that I can use on my feet (but you can't walk in them). Otherwise its about the size of an old iPod Nano so I can stick it in my pocket and walk around the house with it on. Right now its on my shoulder which is a bit sore today.

So I am taking advantage of technology to help me be healthier. I am already living better through chemistry due to the amount of pills I take. So this is just the next step.

Saturday, January 28, 2017

A Conversation

I had a conversation with myself last night, with a few insights from my husband. Let me say I was very tired yesterday. I didn't get through my whole workout and my husband cooked dinner.

After dinner, I made a mistake. I should have gone to bed and not sat down to watch TV by myself. This was the conversation:

Me: I'll just watch a little more TV and then go to bed.
Husband: Don't fall asleep in the living room (or you will be cranky tomorrow because your back will hurt.
Me: Of course not. I'll be there soon.
My inner self: Of course I'll be there in a few minutes but I need to get comfy for a bit.

30 minutes later:
Husband: Don't fall asleep out there. You will be cranky. Come to bed.
Me: I'll be right there. Don't bug me.
My inner self: Just a little more snoozing.
Husband: Are you sleeping? 
Me: No. I'm still watching TV
My inner self: I'm still watching TV through my closed eye lids.

15 more minutes later:
Husband: Wake up and come to bed!
Me: I'm not sleeping. I'll be right there.
My inner self: Its way too comfy here.
Husband: I warned you.

Another hour later:
Me: Damn, I have to go to bed now.

This morning my back might be a bit sore. But the big problem is I ended up going to bed too late to take a sleeping pill and didn't sleep well again last night. Tonight, I will not fall asleep watching TV.

My husband just read this and laughed. I said to him: "you were right". He then gave me a hard time about that too.