The Years

In the end, it's not the years in your life that count. It's the life in your years. --Abraham Lincoln

Today I was watching some old Blue Blood reruns. At the end of one episode, that quote was recited and rang a bell with me.

We need to make the most of our years.

Another Year Goes By

We are at the end of another year. This one for the country has been filled with amazing ups and downs and controversy and more controversy. All I know is I have survived another year, even if I have yet another horrible cold. But what I don't know is how did I do on last year's resolutions?

Do you keep track of your resolutions each year? I know I never do. But I'll get back to that.

So each year, I make resolutions so that I will work on making changes in my life. I have a feeling, in fact, that I make the same resolutions every year. I honestly wouldn't be surprised about that at all. I think I probably want to lose weight every year.

People are creatures of habits and habits can be hard to change. Take anything from losing weight to eating more vegetables. You are good for the first few days and then fall off the wagon. And then there you are again. We all create our own vicious cycles.

You weigh yourself and go on a diet because of the shock you just got. You start to lose weight, feel a bit better, and weigh yourself again. You have gone down a couple of pounds so you celebrate by eating a jelly doughnut and a skipping your salad for a couple of days. So you weigh yourself again, and start over again.... and again and again....

Next time, don't weigh yourself at all (leave that for the doctor's office and their big fancy scale), go on a good diet and don't have a jelly doughnut for six months when you can wear pants two sizes smaller even on your 'fat' days. Wasn't that easy for me to write?

So there you have it. I wrote the problem the solution and still haven't done anything about it. Now I am going to peek at what my resolutions were for last year (because I have a blog this is actually easy). This was last year's resolution:

"I have a resolution finally for the new year: I will stop using my blog as a place to whine, especially about moving. I use my blog to write about issues which matter to me which recently has included a lot of whining about moving."

And the year before which was actually a repeat of the year before that:

"Younger
Thinner
Taller"

So I think by now, I have gotten past the younger and taller part but am still working on the thinner part. But now I have to get rid of my own vicious cycle and leave that part out. That is the part that should be my resolution. Skip the diet part and get straight to the vicious cycle. 

I know part of that: I can't exercise as much because of my health issues. I can't exercise more because of my health issues. My health issues can cause me to be depressed and stress eat. So it all goes back to my health issues.... 

I am way too far off topic here. But not really. Another year has gone by and it is behind us. It is time for me to move on to get past my personal vicious cycle. It is time for the country to get rid of its own vicious cycle of division and hate and to move on to working together.

Why I Don't Blog About Breast Cancer As Much Any More

I have been pondering this one for a long time, years. I used to blog about my breast cancer crap (and if it's cancer, it is crap) all the time. I mean, ALL the time. Because breast cancer was the center of my life. I was going through treatment and coping with diagnosis and all the fun stuff going along with it.

So since I got through treatment and moved on to other ailments, I have not blogged about breast cancer as much. I have thought a lot about this. I have even considered renaming my blog.

After a lot of thought, I have decided the reason I don't blog about breast cancer is that I am trying to bury all thoughts of breast cancer and not think about it. Yes, that's it. I am being a wimp. But its called me coping with breast cancer.

There are five degrees of grief, of us learning to cope with our own mortality - whether it is death of a loved one or our own mortality when faced with life threatening illness. They are: denial, anger, bargaining, depression and acceptance. So my way of coping and acceptance are burying my breast (and thyroid) cancer diagnosis and pretending they aren't there.

This way I allow myself not to think about my cancer diagnoses is by ignoring them. Any potential symptom will be uncovered by my doctors at upcoming visits. Why do I do this? Am I supposed to be hyper-vigilant about any potential cancer symptom for the rest of my life? How could I live that way? I couldn't.

So being a human being, I do what I can to cope. I spend my time pretending I don't have them and assuming that my doctors will discover anything that could be wrong with me. I will fill them in on any aches, pains, and other symptoms that I have but I will not stress myself about it and will pretend they aren't there until I see a doctor.

This is why I don't blog about breast cancer anymore.

Germs and RA

I keep whining about this but its true. Germs and RA do not work well together.  Here's someone else's story:

"When you have RA, the last thing you want to deal with is germs. These germs that are airborne are a recipe for disaster. I want to tell those that refuse to cover their mouth, to please do so.

The last thing I need is to get more sick when it can be prevented. Wash your hands, germs are on door knobs, money and all that we touch. Let’s be mindful in this season of more germs that they easily spread. My desire is to be in great health this winter. I know first hand, dealing with RA and a real bad cold at the same time is miserable. I’ve had times when I couldn’t sleep. My noise was stopped up and a lot of congestion. I was in bed for days. I noticed I was not able to get rid of the cold as quick as I could before I had RA. So let’s not spread germs, because for some illnesses such as RA, it makes for a miserable mix. I know from experience it is not a quick bounce back. It took me about 3 weeks to recover from a very bad cold."

You can see her full story here.

So I am home with a bad cold. Today was the day my family was going to celebrate our family Christmas. My brother was going to come in last night to stay until the weekend. But since I am sick, they did not. 

The last I heard, and I am staying out of the decision making, is that my brother might come in today and stay in a hotel (additional unneeded expense) and my family will celebrate without me tomorrow. They were going to postpone it until MLK weekend but my niece will have gone back to school by then and my other niece has a concert that weekend so it would have to be Presidents Day weekend. 

This is what happens when you get sick with RA. Family events get  postponed and celebrated without us those without colds. Kids miss out on family Christmases. All because I was exposed to a germ ten days ago.

And no I am not feeling any better. I barely slept last night because of my cold. I did get some cold medicine but there are limits to what I can take because of allergies and other medications. 

So again, if you have a cold, stay home and stop exposing everyone.

Resolutions

As the year end approaches, I contemplate my wishes for the coming year. I may be a bit different than most because of my health but here goes:

• I wish for another year without a cancer recurrence or new diagnosis.
• I wish for another year without new significant health issues.
• I wish for approval for social security disability insurance.

I don't think they are big desires but they are important to me. Like to be healthy-ish would be nice. And the disability insurance would help my wallet.

A Request For All Those With A Cold

Please, a request to anyone with a cold who wants to go out and celebrate the holidays: Please DON'T!

I have a compromised immune system and met some friends for brunch last weekend. One of whom, the one sitting next to me, had a cold and said she had had it for a few days. 36 hours later I started feeling like I had a cold too.

Because she didn't want to stay home and take care of herself, now I have a cold and may or may not be able to celebrate the holidays with my family. Never mind all the other people she has exposed to her cold. She went to work every day except one that she took off. She went to all her family get together's including school sporting events where she was in big crowds.

Where I used to work, there was one guy who always came to school when he was sick. Finally I said something to my boss who said something to him. When one person has a cold for a few days, I have one for at least two weeks.

So, if you have a cold and want to join in the holiday celebrations, please give the biggest gift you can to others, just stay home and don't risk sharing your germs.

All of us chronically ill people with compromised immune systems thank you.

Happy Holidays!

Today my husband and I (at my husband's suggestion) are spending the day at home together. We chose to spend the time without the rest of the family because:

• We wanted to spend time together and enjoy the holiday in our new house.
• We went out to dinner with my family last night and my brother and four children are showing up Tuesday night and we are having a big family dinner here for 12.

My husband is the smart one. Its a great idea. We even went for a walk. We are enjoying the prechaos calm (think calm before the storm). 

What is a holiday supposed to be? A day where you enjoy those who are close to you and celebrate the seasons - and maybe have some good food as well. That is what we did today.

Stop Hiding From The Holidays With Ailments

Yesterday I posted a list of a holiday to dos:

1. Be present, don't buy presents
2. Wrap someone in a hug, instead of wrapping gifts
3. Send love, not gifts
4. Donate food, don't shop for it
5. Make memories, not cookies
6. Be the light, instead of hanging lights

Then I started thinking (sorry). I know I am guilty of not being present at holidays. At Thanksgiving, hosted here, I got tired and ended up lying down in our bedroom for long enough that my mother came down to lie down for a minute and talk to me because I was gone so long.

I really have limited abilities and get tired or end up in pain and need to rest. Normally, I would sit down and let everyone else do all the work. But if we are hosting, I never get to sit down because people keep asking for something so I have to get up. Now that I have had a chance to think about it I realize that I am not being present. I am hiding away.

So I have to come up with a plan. First of all I will talk to my husband and siblings because I know I can't do everything. I can also enlist one of my nieces and nephews to help.

I think I have dealt with my health for so long that I have learned to hide away so much that I start hiding away too soon. I need to work on staying out with everyone else and relax and let everyone else do the work and delegate.

That is actually pretty funny because last week I talked to an old friend who was stressing about the holidays. I told her I thought she should delegate part of the work to her husband and let him do it. I ran into her in the grocery store yesterday and she was shopping with her husband and he was doing the work. She had delegated and was very happy to do so. I have to take my own advice.

I (state your name) will stop hiding on the holidays and delegate instead.

The Best Holiday Advice

I stole this from Journeying Before Breast Cancer and I think it is the best holiday advice I have ever seen:

Doctor Search

Dana Farber Cancer Institute just released this list of what to look for in an oncologist. I just think that they are things we should look for in all doctors. I have ditched doctors who didn't have all these: Communication - why have a doctor who doesn't talk to you. Specific expertise - I wouldn't want a dermatologist to treat my rheumatoid arthritis but I would want them to remove funky looking moles. I would also want my oncologist to specialize in breast cancer. Willingness to collaborate - this is exactly why I am getting a new pain management doctor: he won't let his patients talk to someone else and then go back to him - meaning no second opinions if you are his patient. Access to new technologies - if my doctor is not using the newest technologies to treat me, I don't want them. I had a gastroenterologist in the mid 1980s. At that time he was the head of the department. I went back to him around 2009 and he was still writing paper notes, and only looking at his hand written notes.  Emphasis on personalized treatment - I am not a number. I am an individual. I have a million (or so) ailments and I want a doctor to take all of those into account. Focus on the whole person - please don't just treat my breast cancer but look at the rest of me and suggest things that will benefit my entire body and think about my emotions and mental state. Someone with your style - actually, someone who will adapt to my style. I know how much information I want to hear and will ask you questions. I expect educated answers and references to where I can find additional information. A good team on their side - its not just an individual doctor that treats you. You have to deal with everyone from the person who calls you to make an appointment to the nurse who checks your vitals when you get there and answers questions when the doctor isn't available in person.  This is a good list to review and consider when looking at any doctor.

Women Doctors Are Better

It took a study but the truth is out, women doctors are better than men.

I have always preferred women doctors. I just assumed it was because my pediatrician was a woman. The first dentist I went to was a woman - I have these vague memories of going to see her in her Boston office and getting erasers shaped like animals afterwards. If I get a choice, I usually prefer a woman doctor. Currently I have women doctors for: primary care, oncologist, endocrinologist, dentist, periodontist, therapist, meds therapist, rheumatologist, eye doctor....

"People treated by a female had a 4 percent lower relative risk of dying and 5 percent lower relative risk of being admitted to the hospital again in the following month.

To explain the discrepancy, the researchers point to past studies that have shown female physicians are more likely to provide preventive care and psychosocial counseling. Female doctors are also more likely to adhere to clinical guidelines."

I think the biggest part of this is the level of compassion I receive from these medical professionals. 

I think women are more compassionate as a rule and this compassion is also less likely to come from male doctors. Preventive care and counseling are very important. Clinical guidelines may or may not be as perfect as the article goes on to add:

"...adherence to clinical guidelines “does not always equate with quality or value of care.”

But the point is there. 

Back in the old days, women were not allowed to be doctors. But the times have change, go find a woman doctor and get better care.

Loneliness and Isolation

I find our new house provides lots of loneliness and isolation. I knew it when we moved out here and I stopped working that my life would be very different. But I don't think I realized how different until now.

Last winter and spring I was busy getting settled into our new house - and painting about half the rooms in the house. Then I was busy gardening and being outside. Then it was craft show season. Now not so much. I'm not going to finish painting the house until after the holidays but that only takes up so much of my time.

Our neighborhood is full of people who work. The woman on one side is home with two small children to keep her busy. The woman on the other side is retired and never seems to be home. I have taken time to get to know her but I don't think we have that much in common.

Most of my friends work full time or nearly full time so they aren't available during the week, or they are not very local and a good drive away.

My Christmas presents are all purchased. I have to put a few more in tissue in gift bags. I am waiting for a couple last things. I have one idea of one thing to make and that's it.

I love my husband but he isn't here all day long. He works full time and then comes home and does his own thing. This is important because he needs time to relax. When he's not here, he's busy, even if I am not. So I can't expect him to focus on me the second he walks in the door until we go to bed at night. I can't count on him to fill my time when he is home. But the real problem is when he is at work anyway.

Yesterday I was at the gym and then came home and was then home for the day. The cats are not much for conversation. So its just me and and bad TV all day long.

That is not a good combination. I need more to fill my time and interact with other people - other than the gym and doctor appointments. Basically I need a life. A new life.

So that is my focus. My first experience with this kind of isolation was during breast cancer treatment. I was home and I bored. My husband was at work and it went on for months. I was lonely and isolated. Any other time I was home for extended periods of time I was healing from something and got better. Now its just me.

I have options I can turn into Suzy Homemaker but that's really not me. I hate housecleaning. I have been cooking more (but that's not good for my waistline). I could get healthy - but we know that's not going to happen. 

My health is the huge limitation in my life. Physically I can't do much more than I do now. That is my problem. 

The problem is I know what my problem is but haven't quite figured out how to fix it. This week my calendar is pretty empty except medical appointments and the gym. Next week we will have house guests for several days. The week after - I need a plan. I need friends to get together with. I need projects to do. I need to figure out how to get out of the house and do things (within my limitations).

Peer Support

When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.

I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.

Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.

I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.

I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.

Don't Go Quietly

Somewhere out there is a birthday/friendship card about the friend you want is not the one who will bail you out of jail but the one who is sitting there with you in jail talking about how much fun you had. I want to be the instigator who got us arrested for something like 'public embarrassment' and I have a couple of friends who would be sitting in jail with me.

I have two old friends who might be sitting in jail with me (you know who you are - don't deny it). One is a friend from college and one is someone who I started working with in the mid-1980s - you know who you are!

Back in 1981 I was told I had thyroid cancer and I should take it easy for the rest of my life, get plenty of rest, eat right, blah, blah, blah. I then thought about it and decided I would not play in traffic but I wasn't going to stay home and do nothing. (Hence, 10 Club Med vacations by myself but that's another story.) I have also done a lot of other travel, adventures, and finally some medical mis-adventures.

But I have also learned to cultivate a list of heroes, of people who I admire who have not gone quietly. Just last week, I learned about another person who did not go quietly. That is how I want to go. I'm still working on the details.

Do not go gentle into that good night
Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Doctors Should Speak Clearly

I really dislike a lot of doctor speak. They say things like 'with your medical history we need to be sure' or 'that really needs more research before we can tell if it would be right for you'. Then they try to add explanations about things that include the words 'that's a possibility' or 'we could consider that'.

What exactly does the word 'consider' mean? I had never really thought about that until I read this blog post that was mentioned on Facebook and then I got really irritated. If a doctor says they will 'consider' a potential treatment protocol? Does that mean they want to go look something up about it or they want to prolong my agony? Why can't they just say there's a new option for you that looks pretty good.

I think doctors get trained so much (and have to keep potential malpractice suits in mind) that they hesitate to speak directly about anything. They feel the need to insert all the fine print you see in a print ad for a medication to cover all the potential side effects or 'adverse reactions' into their words. Can't they just drop the doctor speak and talk clearly to a patient.

Its just you and your doctor sitting in an exam room or their office, and they have to speak in circles so there is no chance you could ever sue them for anything. Its unfortunate that some people feel the need to sue too quickly and even more unfortunate that some doctors abuse their power and some patients suffer as a result. The rest of us patients pay the price for that in the resulting doctor speak.

I think if doctors spoke clearly to their patients and talked to us like a person instead of as a potential lawsuit? And if they didn't use the words like 'consider' or 'possibility', wouldn't we all be better off?

You Know You Are Unhealthy When....

Your calendar is full of medical appointments and you never get to see your friends.

I used to work with a woman who told me that I was unhealthier than an entire floor at the local hospital combined and she didn't even know about my cancers .

But you really know when you are unhealthy when you are in a room full of people with cancer, mostly stage IV, and they consider you unhealthy. That is what happened to me yesterday.

I'm just trying to keep my sense of humor through all this.

Living Without Cancer

I have had further thoughts on my post from the other day on Not Talking About Cancer and then more thoughts. As I wrote about enjoying not talking about cancer, it really made me think. What if you didn't even have to consider talking about cancer or not talking about cancer? Because you had never had cancer?

I think this is the part that I am stuck on and really struggle with at times. I have never been an adult with out cancer. This is very difficult for me. I went from being a fun loving, college freshman to a cancer person. (This means if you got to know me after August 1981 you never knew the pre-cancer me.)

If you have had cancer, can you think about your life before and after cancer (and none of that 'new normal' bullshit) how have you changed? How has your cancer diagnosis changed you? What is different about your life?

I couldn't tell you what is different about my life, before and after cancer. Whatever equilibrium I reached after my first cancer diagnosis, it was shattered by my second one. I do know that having cancer once before, gave me some additional experience for my second diagnosis, but even then I wasn't prepared.

No matter what I think you are never really prepared for life as a patient instead of life as a person. My big struggle is to learn to cope with this in life. Perhaps this is why I have therapy?

Making The Change

Okay, I am going to do it. I have been pondering changing my pain management doctor and I have decided today (I am finally going to remember to) make the call. While I personally like my old pain management doctor and think he is a decent guy, I question the care I have been receiving.

I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.

After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.

He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.

Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.

I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.

Talking About Cancer, Or Not

I have a lot of friends these days who have had cancer. And then I have friends who have not had cancer but sometimes we still talk about cancer or my health. But then I have friends who do not have cancer or any big ailments and don't really know about the disasters of my health so we talk about other things. Like life.

Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.

I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.

We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.

Further proof there is life outside of cancer crap (and if its cancer, its crap).

It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.

Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

Vanessa Bayer

I can tell you I am not Vanessa Bayer's biggest fan, because I honestly do not stay up until midnight to watch the show (waaaayyyy past my bedtime). But I am suddenly a hug fan of her openness regarding her leukemia diagnosis.

I was getting my hair cut this week and had a chance to catch up on the latest magazines, including People. 

"When Vanessa Bayer was just freshman in high school, she was diagnosed with leukemia. While the news was a shock for her and her family, Bayer says her cancer battle ultimately led her to a career in comedy.

“I wasn’t really that scared,” Bayer says in the latest issue of PEOPLE. “My dad is a really funny guy, and we would make jokes about my leukemia. When my friends would come over we would joke about it too. It’s sort of messed up out of context, but it put everybody at ease. Being sick is the reason I went into comedy.”"

She went from being a Make-A-Wish kid to a career in comedy and she's still here. 

Also, I really want to say that I am so happy to hear about another person who had cancer while young and is being very open about it. I think that the world is a better place if people do not keep their illnesses quiet. There is nothing wrong with talking about your medical ailments. And you probably are a lot healthier if you do talk about your medical issues. 

But anyway, I am now one of her biggest fans.

I Am Aggravated

My body is not cooperating. It keeps on bringing areas to my attention that are not cooperative, i.e., causing pain or other discomfort. I am not happy about this. I am already in PT for one area of the body that has expanded to a second area. I am going back to the knee doctor on Monday to talk about my formerly 'good' knee which is causing way too many issues. My 'bad' knee isn't going to be a good substitute for it.

Also, my fatigue levels are not doing me any favors. I was so tired this afternoon that I didn't put away the groceries - except for the most perishable - and left them for my husband so I could go lie down.

This does not make me happy. The roller coaster of cancer is bad enough, actually it probably the worst. But the fatigue and pain roller coaster isn't much better. I am not coping well. I am whining.

And it snowed twice this week and we are due for more snow Monday and Wednesday of next week. This makes me less happy and more aggravated. Its time for my body to suck it up and get back in lie.

The Idiots At the TSA in LAX

Did you hear the story about the woman who was basically groped and abused by the TSA at LAX? Sure it made a tiny story on CNN and now they just show the video with the title "Breast Cancer Patient Livid After TSA Screening'. Then I went and read the full story on the woman's blog. 

The TSA has issued a small apology but apparently they don't get it. Even their supervisor in the video is pretty darn useless.

Seriously Deborah, the woman in the video, told the TSA agents she had breast cancer and they still didn't get it. Really? She is undergoing cancer treatment and you treat her like a piece of crap.

Getting Back On Track

This morning I actually feel rested. Actually I felt pretty rested yesterday morning as well. But my day got hijacked and I ended up spending several hours with my father taking him to a doctor appointment (broken second metatarsal in his left foot at age 88) and then x-rays, back to the doctor, and then home. And then home to our house. I was totally exhausted by the time I got home at 430.

But then I slept for close to 9 hours without waking up. So this morning I will go to the gym, then get my hair cut, and go to the library. Then I will stay home and finish what I never got to yesterday. I need to get back on track.

What works best for me is to go out and do things during the first half of the day and then stay home for the afternoon for the most part. I often need to rest in the afternoon so if I am out all afternoon, I lose that key resting time. This will also allow me to eat regularly.

If I skip lunch I have a tendency to eat a lot of crap just before dinner. Yesterday I didn't get lunch. My father and I kept asking each other if we wanted to get something to eat. We both said we weren't hungry so we never got lunch. Eventually, we decided we just wanted to get out of there and never ate lunch.

So when I got home after dropping off my father, it was 430. I first ate a chocolate chip cookie (which also has cinnamon, clove, oatmeal, and pecans - oatmeal is most important) and then I ate some cheese and crackers. Then, 400+ calories later, I decided I needed to wait until dinner. I should have had an apple or an orange and a big glass of water - you wonder why I struggle with losing weight.

I should be home by noon and can then do what I need to do. I need to be back on my schedule. Rest and food are very important and I need to schedule them in to my life regularly.

Wallowing

Recently I have been wallowing a bit too much. A few years back (2010 to be precise) I blogged about my wallowing rule - 3 day maximum. I have said that I have been whining but really what it is is wallowing.

What is the definition of wallowing? (since it is such a 'common' word. Most people probably haven't considered it since some word test back in high school):

wallow
verb (intransitive)
1. (esp of certain animals) to roll about in mud, water, etc, for pleasure
2. to move about with difficulty
3. to indulge oneself in possessions, emotion, etc: to wallow in self-pity

See? Definition #3 is exactly what I mean.

I think I have been wallowing in self pity, or the stress of more medical ailments.... I am not sure which one I prefer. If you add in lack of sleep and fatigue, ta da! You get wallowing.

After blogging yesterday, I realized I have been wallowing. I need to change my focus and be more positive. That has been hard to do when I haven't been getting enough sleep, been very busy with craft shows, Thanksgiving, house guests, concussion, and stress, depression, and anxiety, and new medical ailments. (But otherwise I am a very healthy person).

So my goals are to do less wallowing and do more positive things. Today are my first steps:

• I am meeting a friend for lunch and a little shopping.
• I am going to research CPAP machines so they aren't a looming mystery (causing stress).
• I am going to fit more fun into my life. 

Being home and not having the benefit of going to work and seeing other human beings, I find I can easily let myself get depressed and then stressed which means anxiety. This is not a good combination. 

Now that we have been here for almost a year, I need to find more things to do to keep my sanity. I might breakdown and go to events at the senior center (even though I am too young to join). But I will pull my positive attitude out of my back pocket and stick a smile on my face to rejoin the human race.

More Ailments

So yesterday I blogged about my stupid sleep test, CPAP machines, and other whininess. I wrote that I have a new ailment, and what's another ailment. But seriously, another ailment? I don't really want another ailment. In fact, I am kind of sick of being sick and having ailments and more ailments.

Honestly I just want to stop having ailments, be a healthy person, and and have a life. I mean what do I do now? I go to the gym three times a week. I go to doctor appointments and PT now. I don't go to work. The only other places I go regularly are the library, grocery store, and knitting group.

I would prefer to do thinks like go to the beach, go hiking, go skiing or snow shoeing, garden more. I just feel like whining today.  And my car was sliding around in the snow.

I did my sleep test with the CPAP machine. The tech was happy to show me how much smaller the full face mask was that I got instead of the older bigger ones. I don't care. I felt like I was back in the hospital after surgery with the cannula and a combination of when I had an endoscopy and had to deal with that damn tube down my throat. Needless to say, I wasn't comfortable. I couldn't reach over and have a sip of water when I wanted.

I am not looking forward to when my damn CPAP arrives and I have to use it. Whine over. For now.

Managing That Sleep Thing

Yesterday I got to my last craft show of the season. I got set up and then sat down in my booth to regroup before the show started. I was nice and warm and I started to fall asleep. At 9 o'clock in the morning. In front of hundreds of people. Several times during the day, I had to get up and walk around (and steal fudge samples from the booth next to me for the caffeine) to stay awake.

Why do I get so tired? One of the many reasons is the fatigue caused by my fibromyalgia (and its insomnia) and rheumatoid, to a lesser degree. It also turns out I have been diagnosed with sleep apnea which causes me not to sleep very well. (What's another ailment along with all the others? I have stopped keeping count.)

Because of my reports to my primary care that I get so tired sometimes I can't stay awake and  need to nap extensively, she sent me for a sleep test back in September. It came back with reports of Apnea. So tonight I am going to another sleep test, to try out a CPAP machine. (I am so excited, I can't wait.)

If I end up with a CPAP that has a giant mask on it, I won't be happy. I think the new ones have something under your nose only. I don't think I can sleep with a big mask on my face.

At this point, I would be happy with a good night's sleep regularly.

Breast Cancer Idiocy

First day of radiation treatment. I look like I'm about to make a run for it which is accurate. Radiation is frightening to me. Something about not being able to see the laser, see the treatment and having this machine moving around you just scares me. I'm sure I'll get used to it but right now.... I hate it. #radiation#radiationmondaysucks #stillfightinglikeagirl

This is a picture of Shannen Doherty, from '90210', as she starts radiation for breast cancer. Why do I call this idiocy? Her business managers allowed her health insurance to lapse. She had to sue them. Can you believe that?

What competent person would allow health insurance to lapse when they were responsible for other people's insurance.

A cancer diagnosis is stressful enough but if the 'moron's (and I use the term loosely) let your insurance to lapse, that would be insanity. Even though insurance regulations have changed so that the pre-existing condition clause is no longer legal, who wants that extra burden on you as well?

If you think what the costs of breast cancer treatment can amount to, that could bankrupt just about any one without insurance.

My message to Shannen: I hope you sued the pants of those idiots. And yes, you can make it through breast cancer treatment. Hugs to you!

Expectations vs. Abilities

Sometimes expectations exceed abilities. But the real problem is when other people's expectations of me exceed my abilities. For example, last week we saw family friends and agreed we need to make it an annual event. It was suggested to me, actually I was told, that we should alternate hosting and my husband and I should host next year.

Um, that doesn't work for me.

I have major limitations on what I can and can't do. I do not go out much at night because I get too tired. We don't entertain much again because I get too tired. Or end up in pain.

No I am not meeting for drinks at 9pm. I am going to be in bed by then. No I am not going for a little walk because you want to. But we could go out and have a cup of coffee or you could come here and we could have tea. Anytime we plan on doing something, there always have to be an out - can I cancel at any time because I need a nap or to lie down.

I am learning to manage my expectations regarding my abilities, but it is clear I need to learn better how to manage other people's expectations.

When I worked, I was a big fan of managing up. This is where you train your manager to understand what you do well and what you are like. It is clear I need to learn to manage my friends and family. No one more trip down or upstairs is not what I am about to do anytime soon. Nor, once I have said I am exhausted, I am not going to stick around for another cup of tea. I am heading home to lie down.

I feel like a recording when I keep saying 'no' but I will have to keep doing so until they get it, which may be never. In the meantime, we will not be hosting an evening get together next year. Maybe during the day, unless I need a nap

Post Cancer Survivorship

So Becky over at BC Becky blogged about developing her post cancer survivorship plan. (Personally, I hate the S word but will suffer through it for this blog post, using it as Becky's word not mine.) Other people call it their new 'normal'. I have found it very elusive. And basically think its a crock of sh*t. However this morning I started thinking (which is dangerous) while reading Becky's post.

I have no way of reaching a new normal because I was living my new normal, post cancer since 1981. I have no way of knowing what it would be like to be an adult without cancer since I was 19 and in college at my first diagnosis.

I always forget this. I am not sure how I am capable of forgetting this. I think I keep going on the bandwagon of let's find our new normal. But I was already living the post cancer 'new normal'. This begs the question is it possible to reach a 'new normal' for a second time?

Along with hating the S word I also have a problem with the blankety-blank 'new normal' concept. But in this case, I may have found the reason why I hate this so much because I have been living it all along.

So this begs the question, what would I be like without cancer? I have no idea because I never really had the change. So you are stuck with me and my post cancer self.

I Can Be Such An Idiot

Let me tell you how much:

• Saturday I was at a craft show. At the end when I was packing up, I could not find my keys. Anywhere. I dumped out my purse twice, looked through everything I packed, checked all my pockets, several times. I was going nuts. I couldn't find them. I asked the few people that were left to see if any keys were turned in. Nothing. Finally, I was calling AAA and dumped out my purse again, and there they were. Talk about 45 minutes of stress!
• Yesterday while leaving a doctor appointment I pulled out of a parking space and clipped the car next to me. In front of the owners. My car only got a corner broken off one of the hub caps. Their car has a scratch on the bumper. They are going to see what the damage is going to cost and get in touch with me. I was mortified. How can I clip a car when I am pulling out forward of the space I backed into. MORON ME!
• Today I went shopping and after I was done and paid for my stuff, I couldn't find my keys. Again. I dumped out my purse again. I checked all my pockets. They weren't there. I asked at the desk to see if they turned in by anyone. The manager was helping me look for them. No where. He said I should leave my information at the front desk and they would contact me if anyone found them. Then I realized that maybe I left them at the register when I paid and I went back to check. They weren't there. But someone had found them outside and turned them in.

So how much of a moron am I? I blame chemo brain, fibro fog, and anything else I can think of in my tiny brain. 

I honestly believe that my ailments and all my medications cause memory and brain problems. Never mind aging, even though I am still 36. So if you want to be brainless, get ailments... They make life so much fun.

Self-Induced Diagnosis

Over the summer, I noticed (I thought) that there were a couple of moles on my face that were getting a little crusty from time to time. I resolved not to make a big deal out of them but to make sure I asked my dermatologist about them at my annual skin check. In the meantime, I should forget about them.

Of course I totally forgot about them because I have no brain these days. Then a few days ago I noticed they were a little crusty and reminded myself to ask my dermatologist. In the meantime, I self diagnosed myself with skin cancer, probably melanoma, Stage IV of course. I am so smart.

You wonder about this. I am an educated person. I know how to be rational and sane and take a pragmatic approach to my life, and its medical disasters. I have my share of medical ailments and medical disasters. I am not due any more.

But once that cancer crap gets in your brain, its hard to stop self diagnosing with more cancer crap.

My dermatologist said they were nothing and I don't need to come back for another skin check for a couple of years. My poor brain.

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Holidays with Ailments

Healthy people have a holiday celebration and they do things like: cook, socialize, eat, socialize, eat more, socialize more, eat more, socialize more. Me? I do things like: cook until my back starts hurting, lie down for a while, cook more, delegate, delegate more, eat, socialize briefly, lie down for a while, eat more, socialize more, fight off sleep while lying down, eat more, socialize more, lie down more, send off guests, sleep, wake up, socialize, go back to bed until morning.

Yes, I had to take breaks to lie down during the day yesterday. I had to take more pain meds than usual. I almost fell asleep while we had a houseful of guests. I did fall asleep while my siblings were driving home relatives and my niece, nephews, and husband were watching a movie. I got up and socialized more. Then I finally went back to bed and slept for nearly 10 hours. 

Today my back hurts at the place my doctor (who will probably be replaced soon) doesn't think is painful. Why am I not surprised? I was happy to host Thanksgiving dinner but with ailments its not as easy. I can't stand up long enough to cook for so many. I need to take breaks and rest. This also means that I have less time to socialize with family members. 

I guess what this really means is that my life has changed and I don't get to do everything I want any more (I am glad I 'finally' figured that out..... Call me slow.)

But it was enjoyable. I just need to learn to remember to plan my abilities better.

I Was Too Busy To Blog

Its the truth. I was too busy to blog. Tomorrow we are hosting Thanksgiving dinner for the first time. My mother, after 45 years of hosting Thanksgiving, has decided that she wants to go to someone else's house for dinner. Now I do admit to doing a fair amount of the cooking for the past 30 years or so, but its the first time at our house. In our new house with its big living room and open to the kitchen dining room which is why we now can host. In our new house with all my health ailments.

That's okay, my husband helped a lot and I can always take a nap if I get tired. Since I have cooked, I do not do dishes.

So anyway, today I have:

• brined the turkey
• chopped celery and onions for two kinds of stuffing
• chopped vegetables for veggies and dip
• made a pecan pie
• chopped the Brussels sprouts
• Set up beds for four guests after finding the sheets, pillows and blankets
• Went to Michaels (for a frame for the picture that should have gone on the wall weeks ago), the grocery store (for butter - you can't make Thanksgiving dinner with two sticks of butter, bagels and cream cheese), and the drugstore for my two prescriptions that I needed. 

I still have to:

• Make the dip for veggies and dip
• Wash and trim the green beans
• Set up our pill boxes for the next week
• Order take out for dinner
• Make a second dinner for our house guests that will show up around 9pm.

So all that being said, I am exhausted (but don't tell my brother or husband or they will start telling me what to do all the time). I need to take care of our pill boxes and go to bed early. And sleep late.

With my health ailments (and even before then), I do not do well with not enough sleep. I need sleep, I need sleep, I need sleep. Last night I was so tired I fell asleep before taking my giant pile of nighttime pills. I did wake up in the middle of the night and took the important ones which won't mess up with my morning pills (some need to be spaced out). 

But I digress. I do not want my health ailments to interfere with my enjoyment of Thanksgiving. I want to be able to enjoy spending time with everyone. After I sleep and take all my pills. And delegate more cooking stuff.

Its A Miracle

I have been running around like a crazy person for the last few days, and will continue to over do things all through the long holiday weekend with three days of four house guests, hosting the big dinner, and then two craft shows over the weekend.

Although I was completely exhausted by yesterday afternoon, I noticed a lack of noticeable amounts of pain. I was so tired I couldn't stay awake after dinner - in bed before 8 (and feeling no shame about it). I went to bed, did wake up for an hour or so, but feel rested this morning. I hope to take a significant nap this afternoon as well.

But pain? I have been doing pretty well. I had a doctor appointment yesterday where they asked me my pain levels and I thought about it and said maybe a 2 or 3. That is not bad for me. What was hurting? Back, right shoulder, left hip, and right elbow. But my back was being okay. I have been doing all the good things, such as taking my pills, not carrying things around, etc. But I have been doing a lot.

This is a miracle. Even though I have been exerting myself and doing what many people will tell me is too much (yesterday was one doctor appointment, one PT appointment, gym, Trader Joe's, Bed Bath & Beyond, and Best Buy), I have not been debilitated by significant pain recently. (Knock wood).

My fatigue continues to dominate my life but its nice to be (sort of) pain free. I'll just schedule a daily nap as needed.

Coping and not coping

Finally this morning I have an appointment with my meds therapist. The week I fell and was home with my 'concussion' I was emotionally a mess. I have found I do not do well with staying home for day after day.

My husband works full time and if I don't leave the house, he is the only one I see for a few hours each evening, I feel very isolated. I need to see other people at least every other day.

My socialization is planned. People need people. I think I especially need to see people and socialize. I was concerned about this when we moved out here and I stopped working.

I planned my schedule to go to the gym Monday, Wednesday, and Friday so I could go out and see people. When I go to the gym, I end up chatting with many people. I think most of there go to socialize as well as work out. Tuesdays I am home and often have lunch or socialize with friends. Thursdays I go to my knitting group.

This isn't the first time I have felt all alone and gotten depressed. But it was the worst. I think because I was home for basically a week by myself. I felt awful, was tired and had to sleep. I was not able to go places and get out of the house with out total exhaustion creeping in.

I was upset and I tried to see if I could get into see my meds therapist sooner than February. But no. Her next appointment was April. I tried to send her a message directly but didn't hear back. So I decided to call her secretary to ask for a prescription or something. It turns out she had a few cancellations and she could fit me in today.

I want to talk to her about how to avoid depression and isolation when I can't get out of the house.  I am sure with my house this is not an infrequent event. I need plans to avoid the stress and depression.

To clarify I am not a massively depressed person. But with every medical set back I seem to lose my ability to cope more and more. If I was a healthy person and able to do everything I enjoy, like hiking into the woods or skiing or..., I might be less depressed.

Yes I Do Have Back Pain In The Middle of My Back

Yesterday I went back to my pain management nurse practitioner yesterday. I felt like it was pulling teeth to get her to admit that there might be an additional source of pain in the thoracic area if my spine (that's the middle part - lumbar is the lower part, cervical is the upper part including your neck).

She saw my x-rays which my rheumatologist pointed out to me as showing possible sources of pain. She didn't think they could be causing that much pain. She did push on my back to see if it hurt (how thoughtful of her). She nearly pushed me across the room as she pressed on my spine. Yes it hurt. A lot.

Finally she agreed to recommend that I have an MRI on my spine to see if anything had changed in nearly 8 years. Its about time.

I keep saying I get new areas of pain and pain management seems to want to prescribe medication to me and give me injections. They never seem to want to look at the areas that might be causing pain. Whenever I say there is new pain, I get these responses "its your fibromyalgia in that area", "its referred pain from this other pain", "there isn't pain in that area".

I think that there is new pain obviously and finally they are going to look at what is going on in my back. At first the nurse practitioner wanted me to come back and see her after the MRI, but then she said I should see the doctor himself and see if he can do trigger point injections there to resolve the pain.

So now I have the date for my MRI (after Thanksgiving), do I want to call my pain management doctor or do I want to try a different pain management doctor to look at the results? A dilemma for sure.

In the meantime, I am sitting down because my back is hurting a lot in the middle where I have been telling them about.

Health Care Crap

So we have a new president elect (who shall remain nameless). My biggest problem with him is that he claims he will dismantle the Affordable Care Act. This is a serious issue. I do not give a rat's a$$ about political partisanship or how Hillary is a liar or whatever label you want to put on anyone. I only care about health care for those of us sick people.

What if health insurance was taken away from all of us chronically sick people? That would be murder essentially for many people who can't afford their health insurance and are seriously ill. And if they don't die, they would be bankrupt.

This is a serious problem. I am not sure how health insurance could be taken away from someone once they get it. But if the insurance was cut back so it wasn't really providing the needed coverage, that is different.

I see this as a fine line that needs to be watched carefully. I can understand if he wants to reorganize it and change how it is funded, but not how he could change the actual coverage and financial benefits it provides.

Hmmmm.... I will be watching.

Germ Exposure and Common Sense

I had a great craft fair on Saturday. I had a table at a busy craft fair and had some great sales. Between sales I chatted with the women in the booth next to me. Both our booths were set up so that we squeezed behind them on the same side. They had several friends stop by and chat with them for a bit.

One woman pushed right up front to talk to them behind their booth, with her cold and told them loudly that she had a bad cold and then about one of her chemo patients who had also stopped by the booth earlier in the day. She sneezed a couple of times while there as well.

I was appalled that she was out at a craft show with her cold. She had shoved into the booth with her germs and sneezed on people. And she was a chemo nurse and treated patients while sick.

And she sneezed on me. With my compromised immune system.

I know, I know that I am the one with the compromised immune system that is way more susceptible to germs than the average person. I know that I am also the one who goes out in public and increases my risk of being exposed to germs. But I do expect that most people will have the common courtesy and common sense of staying home when they have a cold.

I used to work with a guy who would come to work when he was sick. And he didn't seem to care if he shared his germs. I finally complained about him because if I got a cold I would be sick for two weeks.

Yesterday I was supposed to go to a friend's funeral but I woke up feeling like I was coming down with a cold. That meant for me I had to stay home to rest and hope I don't get really sick. Grrr. And I missed the funeral.

Where is the common sense in the world these days? Keep your germs at home please.

Reducing Cancer Care Costs and Hospital Stays

There are two really irritating things about cancer care for me. (Well there are really lots of things that irritate me about cancer care. I could make a giant list of them if anyone really cared but today I am going to focus on two things.

Cancer care is ridiculously expensive. You can take a drug for $100,000 that might increase your lifespan for a couple of months. A single chemo infusion can cost upwards of $20,000.

And at the least sign of germs or low blood counts, you are sent to the emergency room where they admit you. That is a really stupid part. You feel like crap on a Friday night, you call your oncologist and they send you to the emergency room for blood tests and then they admit you after you sit in a room full of car accident victims and finally end up in a really uncomfortable bed with IV antibiotics. Really not a good idea.

The second annoying issue is how quickly doctors throw more drugs at cancer patients. Here, take this too and this and this and this. Let's get you some skilled nurses at home to help you with some fancy new equipment. Each one adds another triple zero item to your bills.

(I could rant on about the annoying part of going to daily radiation for weeks and weeks.)

But finally there are two new ideas that are focused on reducing cancer care costs and hospital stays. (Its about time.) Anyway here are the two new ideas:

Oncologist Dr Barbara McAneny in Albuquerque, NM looked at how her cancer patients dealt with hospital stays and ER visits due to low blood counts and other chemo side effects. She convinced the rest of her practice to provide weekend and evening availability for shots. Then they added other 'off hour' services such as nighttime appointments and same day availability. This resulted in major cost savings and reduced hospital stays. This practice is now being expanded to other clinics across country.

Next, this program above has been expanded even more after July 1 of this year:

"The Centers for Medicare and Medicaid Services has long talked about alternative payment models (APM), and now they are a reality: as of July 1, CMS launched its first APM, for one of the priciest specialties in healthcare, oncology.

The so-called Oncology Care Model (OCM) is now in play in 195 practices across the country, and will last 5 years. Late last June, just before the OCM went live, CMS Acting Administrator Andy Slavitt tweeted: "Big news fr @CMSGov this morning. 3,200 oncologists (double the target) signed up 4 new payment model -- 25% of all cancer care smarter way."

In a nutshell, in addition to traditional E&M codes, the CMS is paying oncologists $160 a month per patient undergoing chemotherapy for 6 months, starting with the patient's first dose. Oncologists are supposed to use that money to set up programs that effectively manage patients' chemotherapy complications "and heighten the focus on furnishing services that specifically improve the patient experience or health outcomes," the agency said.

A key element is that practices must provide "patient access 24 hours a day, 7 days a week to an appropriate clinician who has real-time access to practice's medical records." This and some other aspects of the OCM were drawn from the "Come Home" program pioneered in Albuquerque, N.M., by oncologist Barbara McAneny, MD."

Okay, who wnts 24 hour access, 7 days a week during cancer treatment? Me! Look at smart business practices being applied to cancer patients, reducing care costs and hospital stays.

My Body Needs A Pep Talk

I saw my rheumatologist yesterday and she was impressed with how much is going on with me medically these days and none of it was related to rheumatoid. LOL.

Actually, its not very funny. She looked at my x-rays and explained a bunch of stuff to me. Basically each vertebrae in my back has issues around its edges and the bone spur in my neck is pressing on the nerves which cause problems in my neck and shoulder, exactly as I am feeling. She was also concerned with the osteoporosis in my spine.

However, this all sucks.

My body is not doing its share. It needs a pep talk to regroup. No more ailments. Especially ailments that usually occur in the over 80 crowd. (Personally I am sick of the phrase 'you are so young to have this'.) It needs to stop developing new ailments. It also needs to heal from my damn 'fall' last week. I still don't feel right.

I am skipping the gym again today. I was exhausted yesterday and all I did was go to my doctor, visit my mother, and go to my knitting group. I even left early and went home to rest. I have another craft show tomorrow and am running out of oomph.

So body, listen up: No more ailments. No more long healing times. No more injuries. Start getting your act together and no more whining. Thank you. The management.

Pain and Suffering

Yesterday was not a good day. Some how I did too much (who me) and ran out of steam by the end of the day. And I got some bad news.

First off, even though its been over a week since I fell, I am still not right. I run out of steam too soon and end up feeling a bit 'off' each day. I did ask Dr Google about concussion recovery and found out it usually takes a week or more to fully recover and if you are older or have health issues, it can take longer. Drat.

I want that magic wand to make me better as always.

Second, I called a friend yesterday to see how she was doing. Her husband was diagnosed with stage IV colon cancer nearly seven years ago. He went into hospice just over a week ago. I have such poor timing. I called to see how she was doing and her daughter and step daughters. Then I found out he had died the night before. I felt like a heel. I had no idea.

I will send a card and go to the  wake and funeral. I feel awful I called and didn't know.

I am also sad. They were together a long time and married for ten years. Now my friend is a widow. She had retired early this year so they could spend time together.

Cancer sucks.

Pain Management

There is a lot of information on pain management. I even have a pain management doctor. But what constitutes pain management? I have several prescriptions for pain management - patches, pills, etc. I go to the gym and exercise to help control my pain. I do regular stretching and exercises for pain management.

As you can see, pain management is not just about medication and injections. I want more than that. But I am not sure my doctor understands that. If I go to my pain management doctor and tell him my pain is acting up, he always tells me the same things:

• Don't sit around, get up and move.
• Here's more medication.

He never says lets take more pictures. Or 'let's see if there is anything else new'. Never. He just says here's more meds. Either shots or pills. I think I want more.

I did blog about this in a long day of doctor appointments. I saw his nurse practitioner about 2.5 weeks ago. All she did is order x-rays and upped my pills. My complaint is that I have new back pain higher up in my back. She is thinking fibromyalgia. I am thinking new issues. The x-ray did show some degeneration higher up in my back. I looked up what the x-ray showed and it has nothing exciting to say.

So why does my back hurt there? Fibromyalgia doesn't cut it for me. I know what fibromyalgia feels like. Trust me, I do. And my doctor and his nurse practitioner do not as they do not have it.

For the record the new x-rays were compared to my x-rays taken in December, 2008. That is the last time there were pictures taken of my back. It took an MRI then to tell us the whole story. I think I want an MRI to prove to me that there is nothing new going on. I think if you are being treated for something, you should get scans done periodically to make sure nothing is new.

I understand the over testing/over-diagnosis issues. I get that part. But since I was diagnosed with back issues in January 2009, I have been diagnosed with fibromyalgia, rheumatoid arthritis, have had several falls, and a few million other ailments.  Its not like my back pain has lessened in the intervening years. It has increased. You can't keep just upping the meds without further examining what is going on.

When I made my last appointment with the NP, I was told that my doctor has said that if one of his patients sees another back pain doctor, they can't go back and see him again. That's a bit to proprietary for me. I should be able to see another doctor in the department if I can't see him. Also, when I saw  his NP that is the second time in all these years that I haven't seen him. One other time, I saw his physicians assistant and that was years ago. I think I'm done.

I go back and see the NP next week. If she doesn't send me for an MRI or other scans, I think I will find a new pain management doctor.

That Was a BAD Dream

Last night I had a weird dream. I woke up around 3 AM after dreaming that I had a rock hard lymph node on the top of my chest, near the base of my neck. In my dream, I could slide it around and feel it. A bunch of doctors were there trying to explain to me that it wasn't a big deal and chemo would solve everything. Thank god I woke up!

But of course, then I had to see if I could feel a rock hard lymph node on my chest near my neck. Of course I couldn't.

Nothing like a dream to show your worst fears in 'living color'.

And did I ever get back to sleep? No. I am sure I will feel very 'energetic' this afternoon....

Not Blogging Equals Stress

As I also previously blogged, I haven't been blogging as much recently. And I have been feeling very stressed, and depressed recently. I realized these might be connected. At the beginning of my medical disasters (except my hysterectomy which was 18 months earlier) 9.5 years ago, I started blogging about my medical crap. I was 'expressing my stress' (say that three times fast). I trained myself to vent through my writing. Then I haven't been writing, so I haven't been venting.

Last night I started thinking (which is very dangerous at times) and realized that I really need to start blogging again for the emotional stress release I need.

What is on my mind causing me stress? The bump on my head was a real eye opener to my stress levels. I spent most of last week doing a lot of nothing.

I stayed home all week, not just one day as usual. I went to PT on  Monday and the doctor for my concussion diagnosis on Tuesday and that was it. I physically was not up to doing anything else. I didn't go to the gym at all. When I go three times a week, I get to see a lot of people and chat with some. I think its my one big 'get and see people' event each time I go. I also cancelled my second PT appointment of the week and skipped my knitting group. In not going out, I really isolated myself. Which was very bad. But I did feel so bad the beginning of the week that physically I needed to stay home and rest.

By the end of the week, physically I was feeling better but emotionally I was feeling worse. In addition to not going out, I didn't blog much so I didn't get to vent as I needed.

Saturday I had a craft show and I was very happy that I actually felt good enough to be there all day. This week I plan to be social - go the gym 3 times, PT twice, meet a friend for coffee, go to my rheumatologist, and prep for my next craft show this coming Saturday. I also plan on blogging every day.

Today is Better Than Yesterday

By the end of yesterday, I was beyond stressed. Let's see why was I stressed: I have been feeling like crap because of the bump on my head. I have two friends in hospice care (see yesterday's blog). I have several other medical issues to deal with - my PCP keeps sending me with more blood tests to figure out why I have been so anemic (problem since chemo). My neck hurts from the (stupid) bone spur. My mother ended up in the emergency room yesterday (but she's going home today). I have my first craft show this weekend and need to get ready. I can't remember the rest.

I was so stressed I was ready to call for an prescription of ativan (a/k/a lorazepam). But I survived.

This morning I have taken my time to get ready for my upcoming craft fair. I have also talked to a friend and my mother.  I feel slightly less stressed and am relaxing enough to get things done.

I hate stress. I don't need any more medical issues. My mother needs to get healthier.

I'm Losing My Friends

Right now I have two friends in hospice care. One I have known for only about six months but we have gotten pretty close. She was in my knitting group and when I met her she was on palliative care only for pancreatic and other cancers that she has been treated for over 20 years. She is on hospice care at home and no longer goes to knitting. We have talked on the phone and skyped regularly over the past four weeks but it is unclear how much longer this will go on.

The other friend is the husband of a very old friend (friends for more than 40 years) and has been treated for stage IV colon cancer for nearly seven years. His disease has now progressed so that he is fairly 'out of it' and is in hospice care. I hope to get to see them both this weekend but am not sure due to my health. If you are incoherent and in hospice care, how long can you last?

It is hard enough to deal with one friend in hospice without having a second one to cope with as well. I am close to them both and will go to both their funerals.

Cancer sucks.

Bump

Sunday morning is special around here. We used to get the paper daily but now just don't have time to read it. So the Sunday paper is special. I get to spread it out and read as much as I want. We also tend to make a nice breakfast to eat together.

But this Sunday was a bit different. I was still in my pajamas and barefoot and headed back to our room to get something. As I stepped into our room and stepped on a piece of tulle from one of my craft projects. That was a bit slippery and my feet went one way and I went the other.

The resulting damage was from the fact that I landed on my hip, elbow, knee, and shoulder.... I took the ice packs my husband got me and went back to bed to read the paper. I took it easy for a few hours. Later we went out to dinner with my family until my back started complaining and I decided I really didn't feel that well.

Of course I didn't want to go to the doctor about a fall because they would add it to my record as a fall. If you are a fall risk in the hospital, they give you bright orange or yellow wrist bands and make you stay in bed until someone can walk you ten feet to the bathroom. I hate going to the hospital because of a fall. I don't want that label.

After thinking about it, I decided that I also probably hit my head, either on the floor or the door. Monday morning, I decided I needed to take it easy and skipped the gym. I did go to physical therapy for my neck. I told the therapist about my fall and he asked me if I lost consciousness or not. I said no and he told me if I didn't feel well again today I should go to the doctor.

So I went to the hospital and saw a nurse practitioner. She sent me for a CT scan to make sure there was no bleeding on my brain. (Of course being a cancer person, my real fear was that there was a bad thingie up there.)

I am fine and there is no lasting damage. But even though it technically it isn't a concussion, I should treat it as one. This means no gym. No PT. Just rest and take care of myself. All from a little fall and bump on my head.

I Haven't Been Blogging

I haven't been blogging recently and I haven't figured out why. Well I do have some thoughts on the subject.

Originally I started this blog as a way of communicating my medical disasters, especially with breast cancer. That is what I told everyone. It was also my way of venting. Sort of journaling. It was very helpful to me in both ways.

Over the years (9.5 to be exact) the topics have added and changed, as my health has continued to decline. My blog has been so helpful to me.

But I have hit a major wall, writer's block so to speak, in recent months. Its not like I haven't had medical issues to deal with. I just haven't been very good at writing about everything.

I did have some major distractions because I did some travelling. But I haven't been able to write. I also have had some fun and its getting to be craft show season for me.

I think I just need a break for a bit and will be blogging again.... So my blog may be intermittent for a bit but I'll be here and blogging regularly again.

Thoughts on Coping

I was talking with a friend today. She is having a nudgy little problem that is driving her crazy. She doesn't like nudgy little problems that drive her crazy. She asked me how I do it and cope with everything.

My reply after that, with some deep thought, is:

• Exercise
• Whining
• Prescriptions
• Bitching
• Ice packs
• Complaining
• Chocolate (preferably dark with cashews or pecans)
• Over eating
• Heating pads
• Under eating
• Substance abuse (just kidding)

I admit I haven't had the best week but I'm still here. Monday I was exhausted and in pain. Tuesday I was in pain. Wednesday I was okay but sore after PT. Thursday, its still morning but I feel okay, so far. 

Pain is no fun and its been way too popular this week. One of my many doctor appointments on Monday changed around some of my pain meds. But its still too early to see if that is helping me. So I will refer to my list of options above on how I will cope. But in the meantime, I might need an ice pack and/or a pain pill. 

Alternative Medicine and Naturopathy

I have always been a fan of alternative and holistic medicine and naturopathy as well as Eastern medicine. I believe that modern Western medicine works fairly well but there is no reason not to look at other established types of medicine. Tell me Chinese people didn't develop their own type of medicine to survive and grow for thousands of years.

I think there are many things that are involved in good health care and an antibiotic isn't going to cure everything. I mean what about drinking hot lemonade with whiskey for a bad cold? Its a dose of vitamin C and the whiskey might help you take a nap. Rest and vitamins will help a lot to cure a cold. Or steaming out congestion with a pan of warm water and a towel instead of taking a decongestant? Or acupuncture for knee pain?

Anyway, I have always thought there was a lot of benefit to these types of medicine. Then I read this article. A former naturopath is taking on her whole field of medicine saying it isn't anything more than witchcraft. I read the article and then read parts of her blog.  I found it fascinating.

The way I read it is she believed in naturopathy and then she studied it in college before beginning practicing. Then she decided that it wasn't helping people.

“I’m trying to contextualize and call out the false and exaggerated claims,” she said. “They want to be able to do everything an MD wants to do — but they also want to practice essentially witchcraft.”

In contrast other naturopaths are lobbying to get their practices more legitimatized. So the question arises, why? As a practitioner, Britt Hermes didn't feel she had the education to help people:

"Hermes has railed against the Bastyr curriculum as wholly inadequate to train practicing clinicians. She says she never learned about the medical standard of care for most illnesses and had minimal experience working directly with ill patients."

So she thought she got enough training but then realized she didn't. She was smart and decided that she needed to do something else. And now she is working to raise awareness that naturopathy isn't going to cure very much. It can help with conventional medicine but isn't going to cure anyone alone.

If you use naturopathy to help you, you might want to go read her blog and the article to get a better sense of the short comings of ignoring hard evidence.

A Long Day At Doctors

After all my traveling, I realized that my body was not being very cooperative. I have increased knee pain (in the new bad knee, as opposed to the old bad knee), I have new back pain higher up than previously (it came and went for a few years but is not more there than not), and my neck and right shoulder have been giving me lots of problems.

So after waiting around for a few weeks, it became time for all my appointments. I had three different medical appointments, in two different facilities 30 minutes apart, yesterday. I started at physical therapy about my neck and shoulder. After speaking to the therapist, he did some stretching on my neck and gave me a  whole bunch of exercises. I will go back and see him twice a week for the next six to eight weeks. And its not that convenient a location.

Next I saw the nurse practitioner of my pain management doctor. She talked to me and pressed all sorts of painful places on my body. She upped my medications and sent me for x-rays. I am supposed to go see her again in three week to see where we are and see if I need an MRI or other imaging. I haven't had a spine MRI since around January 2009 and the question will be if my insurance will pay for it, if I really need it. 

I am kind of fed up with this doctor. He has said to me that even though he has been treating me for nearly 7 years, he does not think there is a need for any new imaging. Any new pains are only caused by my existing conditions. If I don't get anywhere with this NP and doctor this one last time, I will probably find a new one. A friend of mine also saw him for  years and then went to a back surgeon who told her she should have had surgery a long time before. This does nothing to my comfort level with him..

Then I went to X-ray for five pictures of my knee, four pictures of my thoracic spine, and three pictures of my lumbar spine. That was lots of fun. I am not good with the contortions required for some x-rays.

Finally I saw my orthopedic surgeon. My knee was back to its throbbing at night that I had experienced last winter and spring before he injected my knee. I hoped for a new injection which is what I got. But it made my knee really sore and I hobbled out to my car. I went home and took a 2.5 hour nap. I think I was a little tired.

Overall it was a good day, just very long for me. I am not sure I am up for a long day like that again. 

This is just a bit of my life with millions of doctors. At least I didn't see any oncologists. That part makes me happy.

Ignoring Pinktober

I have been doing a pretty good job of ignoring Pinktober this year. I know I went to a breast cancer friends meet-up recently and everyone (but me because I forgot to order one) wore their pink shirt for the event. I don't consider that a Pinktober event because it doesn't matter what time of year it is that we get together. The get together is the most important part.

I have seen pink ribbons everywhere. I went shopping at a mall this weekend where every store in it had a pink ribbon on its front to promote something about Pinktober. I can't even remember what it said because I didn't really stop to read one. I know there are a lot of other pinkification events but I have put my blinders on and ignored them.

I am okay with this. I don't need pinkification in my life. I can live with it. I think the worst of it has subsided due to the backlash in recent years. Some women like wearing pink and don't really care what month it is that they wear pink. I certainly don't need a pink ribbon on everything.

Some people really embrace these 'cancer' months. How many men grow a beard in whatever month it is that is for prostate cancer awareness? (I had to look that up because I couldn't remember what cancer it was.) Or is it an excuse not to shave for a month? I don't know but they do it because they want to.

I think if we all wear our blinders as it suits each of us, we will do fine. For example, if you put your election blinders on you will make it through to November 9 when we will know who our next president is. You might be less stressed if you do.

I will survive Pinktober as I plan Halloween at our house. I have a hidden candy stash. I have to talk to our new neighbors about our willingness to participate in trick-or-treating. And I will wear pink when I want.

The Hospital Space for Relaxation

As you go through cancer treatment you need a place to sit quietly with friends and family. Every hospital has a space where families of patients can come together and relax with the hospital patient. There are little areas tucked away. Every hospital has one.

At the hospital I go to there is a little quiet space tucked away down by the chemotherapy infusion rooms which is comfortable and has a small lending library for patients and their family members.

At Children's Hospital in Boston, they have the Prouty Gardens. It has been there for sixty years and was donated for that specific purpose. Mrs. Prouty was told by the then hospital president, that it would stay until 'all children were well'. She then hired professionals to design and create the garden using her own money. On a plaque in the garden it says: “Because of Mrs. Prouty’s vision, this garden will exist as long as Children’s Hospital has patients, families, and staff to enjoy it’’. The value of this garden to patients and their families can not be measured.

Many families have spent time there with their children in their last days. They have even spread the ashes of their children there and have gone back to remember then there. Its a cemetery in some respects, even if its use as one was not intentional. Its a place of remembrance.

Now Children's Hospital is going to dig up Prouty Garden for the purpose of expansion. The claim is they need the space for more private rooms, a neonatal intensive care unit, and a heart center. Big business interests have taken over the wishes and desires of patients, former patients, deceased patients, and their family members.

On one level I can understand the need for the hospital to expand and add more space to treat more patients. All businesses run into the need to expand. They find more space where they could then expand. Children's Hospital has multiple campuses where they could expand elsewhere.

The idea of taking a space which has been used for contemplation and remembrance for so many for so long to build a huge building is very unjust. This whole idea just upsets me. The hospital went back on their word that has stood for decades. The only hope is that a judge will step in and rule to protect the garden.

Its How You Get Up Again

After cancer hits you, you cope and move on. But I think the most important part is how you cope. Many people are familiar with Scott Hamilton, the Olympic medal winning figure skater. But I am not sure that everyone knows about his cancer diagnoses. In addition to testicular cancer in 1989, he has also been diagnoses with brain tumors, several times. And he has also developed that awesome resource ChemoCare which provides a huge amount of information on chemotherapy regimens, including the all time favorite, side effects. His last diagnosis was last spring.

He spoke about this recently with People Magazine, that ever popular medical reference. I found the video very interesting and provided some thought provoking insights. Watch it all the way to the end (its less than 3 minutes), and then think for a bit.

A cancer diagnosis is a big fall in your life. Actually its not a fall, its more like it threw you down three flights of stairs. But you have to regroup and go on with your life.  You still need to go to the grocery store, have surgery, drive your children to school, do the laundry, deal with surgical drains, mop the kitchen floor, dust the living room, make the beds, hang out with friends, and go to more damn doctor appointments that you ever thought possible. And deal with this huge emotional wave of medical crap.

Scott Hamilton has had to deal with this four times now and he came up with this advice.

Its not what happens when you fall its how you handle it. The remember to smile like Kristi Yamaguchi as you do it.