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.

In My Inbox

I get so many emails every day from some of the many websites where I am registered. Most of them are health related (becuase I am still waiting for that cure). Usually I can hit delete on many of them because they don't appeal to me for some reason or another. Then I move on to the rest of my day (after the USA today crossword puzzle, checking Facebook, and my blog).

In my inbox this morning was a startling, shocking, upsetting email. Its title was: "Is having bacon good for fibromyalgia?". First of all let me say that I really hate emails that start off with a question. They are just click bait. And I hate that.

Next, bacon is a favorite food. I know its not healthy but if I can have bacon I will. I don't like other breakfast meats much so its bacon or nothing. And if bacon can be incorporated into dinner, that is just fine with me. (A favorite is cook a couple of pieces of bacon - one per person - in a fry pan. As the bacon is almost done place scallops on top. When the bacon is done, the scallops should be too. Serve scallops with bacon crumbled on top.) I have bacon maybe every few weeks at the very most.

Don't tempt with bacon in click bait. Its just wrong. But I read the email and found out that bacon isn't that good for fibromyalgia.

"Bacon is highly acidic and the fatty acids it contains can easily aggravate your pain symptoms. Having a lot of pork can result in massive inflammation of your joints. Just imagine eating bacon for breakfast and having to spend the rest of the week in pain, it can really affect your lifestyle."

That is just wrong. Bacon is good for everything as far as I am concerned.

"It is a big NO to take bacon although some suggest that having bacon in moderation is fine. If you suffer from any muscle and joint pain from fibromyalgia, it is recommended that you stop the bacon intake. If it is a tough task for you to cut your bacon completely, a big tip from us is to replace your bacon with turkey bacon which has just half the calories of pork bacon. There are some brands that have no saturated fats. Pick those."

No. Way. Some days breathing causes pain so I can't see that bacon can cause any worse pain. And turkey bacon is full of sodium, more than pork bacon so its really not better for you anyway.

But I didn't know pork could cause inflammation and will check into that part. And I will figure out how to incorporate bacon into our menu this weekend.

An App for Lymphedema Self Care

I am on the fence on this one. At NYU, a bunch of really smart people have developed a prototype of an app for self-care for lymphedema. They have tried it on about 20 people. They realize that they used their app on patients who are highly educated and tech savvy. A great idea. Right?

Not. They realize their audience is skewed in one direction. But I think I could be put in that group myself of well educated and tech savvy but I am not going to jump on my phone or laptop at every twinge. Not happening.

I think I blogged about the idea of 'cool' apps for anyone over 30. Not so great. I like the idea of helping with self-care for patients but not necessarily an app. I think we need a new idea for this. The internet and technology do not solve everything.

I Don't Heal

Part of one of the many 'joys' in my life is that my body heals very slowly. When you have RA or other auto-immune disease your treatment often includes a immune suppressor, such as Methotrexate. I get a weekly injection of it (courtesy of my husband). It suppresses my immune system so am very vulnerable to germs and heal slowly. A cold doesn't go away in a few days, it can take a few weeks and can result in ear infections and other 'fun' ailments.

A few examples: I have this stupid ass wart on my foot that the doctor froze off September 1. Of course it turned into a big blister but is it healed yet? No. Its only 49 days later and its not healed. It still has a scab covering an open area on the top of my foot. I was supposed to have a follow up today but I cancelled it because there is no point. 49 days, that would be 7 weeks in normal speak, and I am not healed.

I had a periodontal deep cleaning almost three weeks ago. I went for a follow up last week and it was barely healed. And I had an area that was starting to cause new problems that the dentist had to lean up.

My husband had a cold last week which he nicely shared with me. I am still sick. I have been skipping my methotrexate shots in hope that I will heal faster but it doesn't seem to have made a difference.

This also can make a difference with any 'fun' medical 'misadventure'. Recovery can be slow.

Today I feel like crap still. I really would like to go to the gym and burn off some flab after traveling and eating badly for two weeks. But I am still not sure. I feel okay for a bit and then not as well. I debate - do I stay in bed or do I pretend I am healthy and go to the gym? 

Finally Back Home

I have spent most of the past two weeks travelling. First it was a needed break with my husband. Then it was a road trip to meet some people who were very important to me but I had never met. I am also now getting over a cold. My husband shared his cold with me last week and I have had it since. To be fair he has been sick for a week as well.

While it may not have been the best idea to over do things for several days in the row, emotionally I needed it.

Anyway, now I am back home and relaxing instead of getting up to go somewhere. I am way behind on rest and sleep. My fatigue level is too high. Basically I need to nap for the next few days to catch up.

However do I regret all my travelling? Certainly not. It was a welcome break from reality. Everyone needs to break up their regular life and do something different. Especially people who are not healthy and feel stuck in a rut because of their health limitations.

Now I do feel refreshed and ready to get back to my regular life (and finally put away my suitcase). And get back to doctor appointments.

I am ready to catch up on so many things - my blog, my doctor appointments, and more.

On The Road Again

This weekend I am on the road again. It is a real road trip. I drove with a friend (well she drove all so far) about 840 miles to the middle of Indiana from Massachusetts. We spent a night at my brother's and two nights in a hotel and then we will go back to my brother's and home. A road trip without the Thelma and Louise business.

Why am I on a road trip like this when I am among the least health people in the country? Because:

1. I wanted to
2. Its a great change to do something completely different
3. I am meeting some people I have known online since 2007 but have never met in person. 

Reason number 3 is the most important to me. When I was diagnosed with breast cancer, I went online for support and to find out information about my latest health debacle. I met all these wonderful women who were also coping with their own breast cancer demons. They were amazingly helpful and supportive and got me through some tough times.

But I never met them in person and now here I am. I will get to meet some of the people who were very important to me and understood what I was going through like no one else could. 

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

Back and Forth

Adding to yesterday's post on the evil voice, I can go weeks, even a few months, and feel that I am doing okay and I am in status quo of a semi-healthy state. Then I go over to the other side and think my body has let me down and I have some new ailment. Or an ailment has decided to act up again.

Its just unfair. Seriously.

But I digress. I felt well for about a week. By well, I mean sort of normal. Then we came home and my back started killing me. And my knee hurts. And my neck hurts. Then I am sure next week at least for a few days, I will feel fine.

The hard part is the balancing. Every day I wake up optimistic and then I do something like try to move, or get up to head for the bathroom. Some days I can manage the basics without saying 'ooch, ouch' constantly. Some days, people start to look at me funny when I start talking to myself 'ooch, ouch, ooch, ouch, ooch, ouch....'  You get it.

So some days its good. Some days its not. I never know. I can have big plans for the day and then my body says 'no you aren't going anywhere'. I can't count the number of times I have changed plans simply because I can't go anywhere.

Back and forth. Every day. Its a crap shoot. Back and forth.

That little evil voice

After years of medical crap behind me, I still get those nasty niggling thoughts that something new might actually be wrong with me. What is the reason for that 'new' problem? Is it cancer again? No I can't get cancer again. I have had my share already thanks. My body can't take much more please. 

I admit to having some not so good thoughts about pains in the past few days that are leading me to making new appointments with a couple of doctors. This does not make me happy. But sometimes I have to just calm down that little evil voice that causes me so much stress. But since its a Monday morning I have to wait a bit to call in to make appointments because everyone else in the world is also calling in because they get sick on the weekend too.

Anyway my health management basically consists of quieting the little evil voice whenever it speaks up. Is there special health insurance for that? There should be.

Changing Your Wardrobe For An Ailment

I couldn't sleep last night (again - thanks to back pain) and started wondering why women with breast cancer instantly start wearing pink and accessorizing with all things pink upon their diagnosis? Why do they feel the need to do this? I just don't understand. I admit when I was diagnosed with breast cancer I did go out and purchase one pink breast cancer t-shirt which I wore to chemo once and then donated it. I was also given breast cancer t-shirts by family and friends after they participated in an Avon walk. I never wore them either.

What if your ailment didn't have a 'pretty colored' ribbon, would start wearing that color? If you were diagnosed with narcolepsy, for example, would you start wearing black and accessorize with black ribbons? Or if you had ADHD would you wear orange and orange ribbons? Probably not.

With my medical history I should then wear purple (thyroid cancer and fibromyalgia), blue and purple (rheumatoid arthritis), light blue (lymphedema), and pink (breast cancer). I am probably forgetting something but that's enough of a rainbow for now. (See the whole list here.)

Pink has always been one of my favorite colors. I have always worn a lot of pink clothes. But now I actually stay away from pink as I don't want to be identified as a breast cancer person by the clothes I wear. So in some ways I am changing my wardrobe away from pink in a cringing way.

Call it backlash.

I took a break from reality

We just spent six days in northern Maine where there is sketchy phone service and minimal wifi - if at all. I kept my phone on airplane mode so I wouldn't kill the battery with it searching for a signal. Because there weren't any. We couldn't phone home if we wanted to.

Actually it was very nice. A break from everything. I didn't blog which was very minor. But I also didn't worry about medical issues. At all. I pretended I was healthy and did what I could.

We had fun. It was peak foliage. We took a boat tour on Moosehead Lake. We drove 10 miles down a dirt road to look at ruins of a plane crash - which was eerie and creepy to say the least. But definitely worth it. We helped the local economy by shopping and dining out.

It was a wonderful break from all things medical. I didn't have a doctor appointment. I didn't concern myself with anything. This week I have two medical appointments to make up for the break.

I highly recommend a week of unplugging and disconnecting for everyone. But now I have to catch up on so many things.

I Have Learned

Unfortunately because of my health I have learned a lot about dealing with doctors and ailments. Its the one thing I can still do.

Someone I know has been dealing with a significant medical issue and now has gotten some more news which could impact the rest of his life permanently. As someone who has dealt with multiple medical issues I could relate to his concerns.

I shared what I would have done based on my experiences with ailments. I guess I have learned a lot in the past ten years or so of medical disasters. This is what I have learned:

Step one: education. Find out as much as you can about the body part with the problem. Research the crap out of it. I would start with any medical organization for doctors who deal with this problem. Then I would find out as much as I could about the ailment. And then the body part with the problem - what does it do, how does it work, and what is the impact of a not so good body part - can you live without it or if its damaged. What is the long term impact of it. Take the time to learn all you can about the changes in your health and how your body can deal with it.

Step two: ask questions. Write down all the questions you have and then get someone to go to the doctor appointments with you so you can the answers you need. Their job is to make sure you get all the information you want. This is always a good idea with a major medical issue. Keep learning, even attempt to stay up with the latest research.

Step three: options. Once you get the information so you have a better idea of what you are facing, maybe get a second opinion. Take your time and think about options. Digest what you have learned and figure out what you want to do. Don't assume the first doctor is correct.

I hate dealing with doctors and stuff. But I guess I have learned enough that I can share with others on what has worked with me. I just wish I was healthy.

I Survived the Week.

I blogged that this was going to be an awful week. It was. My biggest problem is that I was tired all week. I didn't get enough rest and felt exhausted all week. Every time I wanted to take a nap, I couldn't because I had to go somewhere or someone was going to be here.

Finally last night I got into bed around 8 or so to read. I didn't read very long before I fell asleep. I woke up in the middle of the night and fell back to sleep pretty quick. I woke up at 830. That means close to 12 hours of sleep. I needed that sleep.

I feel much better today.

Its amazing how important sleep can be. If you do not get enough rest your body is running on its last legs. Its can be as important as getting food and water. Most people can get by on a few hours of sleep for a few nights. But me, I need my eight hours or more of sleep. Now ten hours is better for me. And I need to be able to spend some time during the day taking it easy.

But now we are on to another week where I do not have anywhere as crazy a schedule as last week. Sleep and rest will be high on the agenda. I will pencil in some naps as well.

I wish I could go back to the days where I could go from one activity to another. Those days are long gone. I just have to get used to that part.

The Snoring Controversy

Do you snore? No of course not. You have never heard yourself snore. So of course you don't. Sometimes its possible your spouse/partner/significant other will infer that you might snore a tiny bit. But that doesn't mean its really true. Does it?

Last night I had the oh-so enjoyable sleep lab test. I had a sleep test about two years ago so it wasn't all that unfamiliar but I don't remember squat these days.... But because of my blood oxygen levels and my feelings of fatigue it was time for another one.

I got there at 830 last night and was escorted to my 'comfy', 'little' (hospital) bed. They gave me time to change into my PJs and hit the bathroom before they put about 800 leads on my head and face. No not 800, maybe 22 or something. But it took about 40 minutes to get me all connected and then of course I had to pee again so I took the whole concoction with me to the bathroom and then got back in bed.

Then I took my sleeping pill so I could pretend I would actually get some sleep. Then she said 'don't stay up late on your phone and she closed the door and shut off the light. Like I was 8 years old. I should have brought a flashlight so I could read under the blankets in bed.

I finally fell asleep and I must have slept for five hours or so. When I woke up I lay there sort of awake but not really for a couple of hours. Half in and half out of it.

At 530 in the morning, the technician was all perky and said it was time to wake up. That was way too early to be perky. I asked her if I snored. She said she COULDN'T TELL ME! What? She said I could ask my doctor after the report was ready. Which is in two or three weeks. She said the sleep lab generates about 900 pages of crap to be read and then it was summarized in a report for my doctor.

After another 20 minutes of her taking off my million little cables, I was allowed to get out of bed finally and got changed back into my clothes. Unfortunately the cafeteria wasn't open yet so I struggled to the gym without coffee.

And I still don't know if I snore or not. I will definitely need a nap later today.

On Not Blogging About Breast Cancer

So yes my blog is called Caroline's Breast Cancer Blog but I haven't been writing about breast cancer as much. Why? Because of several reasons:

• My health is not focused on breast cancer
• I try not to live in the 'all cancer all the time channel'

Honestly, my health sucks but its not all about cancer. I have plenty of other chronic ailments to cope with. And I also try not to focus on my health all the time. I have other things going in my life - weaving, knitting, travel, gardening, reading.... I can't remember anything else. Oh, cooking. I like to cook.

I wish I could cut all the focus in my life off my health. There was a time in my life when I just had one little niggling constant glimmer in my mind of thyroid cancer and nothing else. Those were the days.

Stress is Bad for My Waistline

This isn't a good week. (I swear I do have good weeks, just not right now.) The reasons why it isn't a good week is that I had an MRI Monday night so I was up way too late - meaning after midnight. Today I have a deep cleaning at the periodontist. This means they will inject Novocaine and then scrape way under my gums. I expect I will have soup or scrambled eggs for dinner. Then tomorrow night I have the sleep lab so I don't expect to get a good night's sleep again. I know I whined blogged about this earlier this week but I want to whine some more.

Yesterday I needed a two hour nap to recover from Monday night. I also needed too many snacks. Today I think I will probably be grumpy. I plan on eating lunch before my appointment which probably means some kind of fast food which is bad. But I think if I have some food in my stomach I will probably handle the teeth scraping better. (My dentist has told me this several times - eat a good meal before dental work. Having food in your system makes a big difference.) Also I probably won't be able to eat for a few hours after between sore gums and numbness.

When I am stressed I find myself stress eating. I know I am doing it and have tried to turn myself towards fruit instead of fattening food. But its just too many categories. When I am extremely stressed (think cancer diagnosis level of stress) I stop eating and actually lose weight. I need to lose weight but I am happy I am not that stressed and am at the whining stage.

I just need to watch what I eat and get through this week. Then I'll stop whining.

When To Get a Flu Shot?

This is part of the big conspiracy to confuse patients. When am I supposed to get a flu shot? In previous years I would go to my primary care physician and get a flu shot. I saw her a couple of weeks ago and was told it was too early. I should wait until the hospital has its clinic in October or go to an other flu shot clinic I find. Hmmmm...

So I did some research. The latest wisdom is to get a flu shot between Halloween and Thanksgiving. But there is other evidence that it may be different for over 65 or the medically frail. Am I medically frail?

I don't know. I do know I am confused.

The Political Season

We are far into the political season. I am just happy it will end in six or seven weeks. I don't know how soon it is and I don't really care. I just know the following:

• When voting for a candidate you are not voting for the best, you are voting for the least worst. This is especially true this year. No one is running around saying which candidate is better. They are only saying which candidate would be the least bad.
• We all have the opportunity to weigh in on election day by voting. I am not interested in discussing anything political and especially will not have any conversation with someone who doesn't vote.

That's it. You have time to educate yourself on the process and the issues now with enough weeks left to learn about them. So go forth and educate yourself and then make your choices (silently) and you have done your part.

I am so frustrated with the entire process this year, I am not interested in discussing it. I am not happy with how the campaigns have progressed so far that I just am going to ignore the whole thing and vote on election day.

I had thought I would watch the debate tonight and then thought not and then wasn't sure. Its supposed to be HHHUUUUGGGGEEE! But then the decision was taken away from me when I was scheduled for an MRI tonight at 930 PM. I will not be able to watch it. I need to leave here at 9 PM and then will be done around 1045 PM.  I still may DVR it so I can watch it another time. Decision made

I was thinking it was unusual that I could get an MRI on such short notice but I think I figured it out.

Politics over for me. Just go vote.

Why Can't I Sleep?

So I am always in pursuit of the land of nod. The only way I seem to be able to sleep is to take a sleeping pill but that doesn't guarantee a full night's sleep. If I get so exhausted I can't watch tv I usually get a couple of hours of sleep. Sometimes I can even sleep all night. But I'll tell you my secret for sanity in the middle of the night. I pull out my tablet and play computer games until I can fall back to sleep.

I am always looking for help with sleep. WebMD can always provide assistance with all things medical. They sent me an email the other day on the Causes of Fatigue and Seepiness and How to Fight Them. It wasn't that helpful. It included things like hidden UTIs, dehydration, heart disease and apnea. None of those are me. And the one that is me didnt help.

"Fatigue Cause No. 14: CFS and Fibromyalgia
If your fatigue lasts more than six months and is so severe that you can't manage your daily activities, chronic fatigue syndrome or fibromyalgia are a possibility. Both can have various symptoms, but persistent, unexplained exhaustion is a main one.
Fix: While there's no quick fix for CFS or fibromyalgia, patients often benefit from changing their daily schedule, learning better sleep habits, and starting a gentle exercise program."

I have done all that. We even got a new power bed with a good mattress where I can raise and lower the head and the feet. I do exercise. I do everything else. I am just very complicated.

I might need to start counting sheep or something.

Not A Good Week Ahead

This coming week is going to be long, stressful, and sleep deprived. I don't know what I was thinking but I think the real answer is I wasn't thinking. This is my week:

• Saturday (today) - craft show where I will have a table all day
• Sunday: Lunch and dinner reservations with two different groups of people. Lunch at noon and an early dinner at 4 PM. 
• Monday: 930 PM MRI for my neck. I should be home by 11. I never stay up that late.
• Tuesday: Deep cleaning at the periodontist with novacaine. How fun! 
• Wednesday: The only good day because there is nothing on my calendar
• Thursday: Lunch plans with a friend. Sleep lab overnight to see if there is anything else wrong with me. This means another night of not enough sleep.
• Friday: Leave the sleep lab at 630 am and go directly to the gym.

What was I thinking? I don't know. I need to allow enough time for plenty of sleep each week. Monday morning I hope to sleep late. I also hope I can sleep in on Wednesday and Thursday since I will be up too late and do not expect enough sleep at the sleep lab.

My goals then for the week: focus on getting enough sleep and rest and pretend nothing will hurt. This is just a lot of poor planning on my part.

How Long Do I Have?

When we are first diagnosed with cancer, one of the first questions we ask is 'how long do I have?' We assume/hope/pretend we will beat our cancer and live a long life. But for me, the little voice inside has always asked 'will I live a long time after the beating my body has taken, mostly due to cancer treatment?'

With two cancer diagnoses behind me, I have wondered how long I will live. My family mostly lives into their 80s, my parents are currently 86 and 88, my maternal grandmother lived to 96. I have always thought I will make it a while longer, being very indeterminate. I don't think I am dying anytime soon.

My body is not what we call 'in good shape'. I have aches and pains all the time, as well as arching pains across my back, twinging hips, throbbing knees. All of this wears on my body. It has gotten me concerned.

I am currently 35 years from a thyroid cancer diagnosis and 9 years from a breast cancer diagnosis. But today I read about a woman who is 50 years from her breast cancer diagnosis. She was diagnosed at age 29 in 1966. Now she is 79 and still here.

That is very encouraging. I really hope to make it 50 years after both cancer diagnoses. I have 15 and 41 years go to. I am not sure if that 41 years is doable for me but I wouldn't mind.

So I hope you are also encouraged by this as I am. With a breast cancer diagnosis, we deal with surgery, radiation, chemotherapy, and more. Our bodies are stressed and strained. But now we have a hero to look up to. If she can do it, so can we.

More Needles????

I hate needles. I really hate needles. If a needle is near me I can't look. If a needle is near anyone else, I leave the room. (Actually sewing needles and knitting needles are fine. Its those icky medical ones that cause me problems.)

Now it looks like more needles are in my future. Ick. Double ick!

Yesterday I went to see neurosurgery because of increasing pain in my neck. Real pain in my neck, not the literal kind. I do have to deal with the literal pains in the neck (like insurance companies, hospital billing departments, and poor bedside manners). Back in 2014, I was having problems with my right arm. I was sent to see a neurologist to see if there was something going on back in my brain to cause this. (A subtle way to see if there was a 'thingy' in my brain.)  There wasn't anything in my brain (except my brain) but there were disc protrusions and bone spurs on my neck.

Jump ahead 2.5 years later and I have increasing pain in my neck, shoulder, and arm. My primary care referred me back to neurosurgery. The neurosurgery physician's assistant said the following:

• Your body may reabsorb disc tissue but will not reabsorb bone so its not going away anytime soon, probably not ever.
• Physical therapy may help so we are going to try that.
• They want a new MRI of my neck (and brain) to get another picture of what's going on and see if there are any changes (read that as growth).
• The next step is needles in my neck sort of like what I get in my spine.

I am overjoyed. I can't wait. But I guess I have to realize that I can force myself to deal with needles if it means the pain might go away lessen. That is my dream actually for a pain free, healthy body. So I guess I have to stick with needles (that is such a bad pun I have to leave it even though its not what I meant to say. What I meant is I have to cope with needles.).

Lymphedema and the lymph system

So as an extra gift with breast cancer, I have lymphedema in my left arm. I am very coordinated and fell on our icy front walk and landed on my hand. My arm swelled up and voila, I have lymphedema. I have a 'lovely', 'skin tone' sleeve that I get to wear sometimes. It even provides some sun protection so I get a tan line on my wrist.

So what is the lymph system? I had no idea until I fell that day. I sometimes try to find more information on the lymph system.

First of all what is lymph? That clear fluid that seeps out of blisters and cuts sometimes. Its the other system in your body like your blood system but it has white blood cells and cleans out the dirty cells.

The smart people at Dana Farber provided this nice picture and a more detailed description on their blog here.

So if you look at the picture in detail, you will see how it flows around your body. And its pretty much divided in four quadrants of the body: top right, top left, bottom right, bottom left. Lymph nodes are lymphatic coolers. But if some get taken out, a 'traffic jam' occurs and all that lymph fluid gets backed up in whatever part of your body is beyond the incisions.

In my case, they took a big scoop under my left arm that grabbed a whole bunch of nodes. So the little lymphs get stuck in my arm which swells and is permanently larger than my right, dominant hand.

A former co-worker of mine had a bad leg from something traumatic and walked with a lymph. He ended up in the hospital for six months with lymphedema in his leg. I have a friend who had lymphedema in her arm and also on her side and in her abdomen. With treatment, she is now a smaller size in her torso.

So this is a nice little education class for the day. Class dismissed.

In Shock

We moved to our new neighborhood last January. January in New England is not a time when people are outside much (unless they are playing in the snow somewhere). People are not outside in their yards and being social. All socializing is inside.

We met one family of neighbors a few weeks afterwards because we were outside dealing with snow and ice. We then met more neighbors as the weather got warmer. Because of the street's turns, we have one neighbor directly across the street and one next door. Everyone else is around a corner someplace. I met the neighbor across the street, B, in April or so. We talked gardening. She works at a local school and was very nice. I met her son and grandson. She was planning on working a few more years and then retiring to enjoy her gardens.

We discussed gardening issues over the spring and early summer. She was looking forward to a trip to her home country with some family members in the summer. Then we went away for a few weeks and she was away for a few weeks. I hadn't talked to her since July or so. I just figured she was busy and I was busy.

Last week I noticed lots of cars visiting her. Her family would come over from time to time, mostly on weekends. But there were never that many cars for that many days. It was very out of place. Friday it looked like a big garden party was going on. One of the other neighbors told me that the mailman, delivering a package, told her that there was lots of crying and hugging going on.

Saturday we went to the beach for the day. Sunday one of my other neighbors asked if I knew what was going on because on Saturday she saw a hearse and a procession leaving the house. (She couldn't stop because her child had a medical emergency she was dealing with.) No one knew what was going on.

I thought about stopping by on Sunday to make sure all was okay. All the neighbors were concerned. No one knew anything. I was asked by several people.

Yesterday after the gym, I saw people sitting in the garden. I went over to ask. It turned out that was two of her children. B had felt sick on Tuesday and went to the hospital. She died Wednesday morning in the hospital. She was gone. Everyone is stunned.

It turns out B developed a horribly aggressive, very rare form of lymphoma and that was it. Nothing could be done. Its just horrible. I can picture her in my mind but I will never see her again.

I took a day off

I took a day off from basically everything. Everyone is entitled to a break once in a while. Saturday we went to the beach for a few hours and out for clams. Yesterday I was lazy and did not accomplish much.

I actually pretended I was healthy but wasn't dumb enough to try to do anything I shouldn't. Yes I took it easy. I played with my loom - I have been weaving more. I got some awesome yarn last week that I had to try weaving.

Actually I needed a break from the 'sick' me. Friday night I remembered to check my cell phone for voice mails. Unfortunately I didn't get them to call back two doctor office's before the weekend. I wasn't going to worry about it all weekend so I took a few days off. I will call this morning and work it out and find out what's going on.

Back to reality on a rainy Monday morning. Maybe the drought will finally be over.

I Am Entitled To Change My Mind

Most days I blog about what is on my mind and it just sort of  pours out of me. Sometimes its in reaction to something I saw, read, or heard. Sometimes its just what is on my mind. And sometimes I change my mind. Sometimes I read my blog again and think about what I actually wrote.

Yesterday, I blogged about changes I could make and a week ago I blogged about how I am done making lifestyle changes. And I realized I totally changed my mind. But then I realized I didn't. I am ready to make changes that other people tell me to do. And I am ready to make changes that I want to do. I don't want to be told what to do. I am an adult after all. (I realize some people may disagree with this - about being an adult that is.)

I like to make my own decisions about me. And I am kind of sick of doctors telling me what I am supposed to do and needing to know every detail about me. The worse your health is the less privacy and modesty you have. Doctors make all kinds of decisions for you - eat this, not that, let me stick this needle into you, you will only feel a pinch, etc.

So I am done with being told what to do, or have it suggested to me.... I am going to make my own decisions.

Changes I Can Make

My therapist asked me an interesting question the other day - do I eat specific items that could help with my fibromyalgia? I actually thought about it for a minute. (Me, taking other people's advice???? LOL) An email came through my inbox on foods that are beneficial for people with fibromyalgia - I got as far as seeing bananas on the list and I eat one every day.

However that did prompt me to wonder what other changes I could make to my life to help me in some ways. I had thought that once I left my pastry filled job I would lose a few pounds. I did lose a couple pounds but then they reappeared. This indicates to me that I need to rethink my eating habits because the flab is not going to vaporize as I expected.

I am going to think about making some changes to help me feel better - losing weight will help with other health issues. Here's my list of what I want to work on:

- Food and eating habits. Incorporate more 'good' foods and less 'bad' foods. Good foods are ones which may help with fibro and RA as well as lose weight. Lots of whole grains, fresh fruits and veggies and better home made stuff. The problem with me cooking more is I don't have the energy or the stamina to do much more cooking. I'll have to work on this area and figure things out.

- Exercise. I do go to the gym and get an hour of cardio in three times a week. I also then spend another 30 minutes or so doing stretching, free weights, and machines. But I can't go for walks and things like that. Different body parts start hurting once I go too far. I do try to go out and garden and get out in the yard but I want to figure out how can I do more without regretting it. Maybe I should sit down with my physical therapist and get some professional advice.

We already are leaning to the organic, whole food sort of thing so that area is under control. I grew a lot in the garden this year until the drought hit so we didn't get as much food as I thought but this will expand next year. I am not sure what else can I do but I will give it more thought.

I do think I want to explore more changes that I can make to work on this. I think a goal is a good thing and will provide motivation for me.

Pie in the sky!

The lovely smart people at Komen have announced their new goal: To reduce breast cancer death's by 50% in the next decade. Um, this makes me think of the Deadby2020 people. 

Its so logical to to just come up with a great, yet unattainable, goal that makes an awesome headline so you get great publicity to get more donations for this unrealistic idea. 

Its all about the headlines. This is how the PR machines crank out buzz. Seriously. I used to work in marketing and PR and this is what they do. Now the organizations may think they are reasonable goals but if you think about them, they aren't. 

Can an organization decide that they are going to obliterate a disease over a ten year period that has been researched to death (no pun intended) for a very long time? Does that sound logical? No. Or how about another organization decides that they are going to cut the death rate in half from a disease that has been increasing mortality? If something is still rising, how can they just cut it in half? Again, not logical. Or feasible.

I am sure the people at the both Komen and NBC 2020 think they have come up with good ideas. But honestly I am not sure how realistic they are. And if I recall correctly didn't the urge to end breast cancer by 2020 start before 2010 and now they have just over 3 years to go and I haven't seen much progress. Yes I know there have been incremental advances but no solution yet.

These are basically your pie in the sky PR dreams to raise money.

Sleep, Glorious Sleep

So in recent months I have developed the ability to take two hour naps and then get a full night's sleep. I just thought it was just because I need more sleep because some nights I get lots of quality insomnia. But no. My doctor doesn't agree.

No, no, no, no.She is concerned that I get so tired that there might be something going on when I sleep (like snoring) and that my blood oxygen (not blood alcohol - which I often say instead of oxygen for some reason) level has been running lower and lower over the years. So I get to have a sleep test again.

I just had one two years ago. I don't sleep well during a sleep test. I hate the idea of being watched and monitored while I sleep. I sleep best when in a bed with my husband and my two cats. (Maybe I can bring them with me?)

Anyway, grr, grr, grr. But if it makes me end up healthier (but not with a CPAP machine) I will be happy. The idea of a CPAP machine drives me crazy. I am not sure I could sleep with one.

That Breast Cancer Bond Thingy

While I was at the gym yesterday, I was on the bike getting my cardio in when I two women who I know started talking next to me. Then one of them came over to said hi. I knew she had a lot of cardiac issues last spring and I asked her how she was doing. She said she is better now but still had some soreness on the side of her rib cage. That didn't seem like a cardio issue so I asked her what it was.

She had a mastectomy because she had her third occurrence of breast cancer. Twice on the left and this third time on the right. And all three were different cancers. I thought wow three different breast cancers and now two separate mastectomies. And over twenty years.

Of course we became instant pals because I told her about my breast cancer history. That breast cancer bond showed up.

I still find it funny when that breast cancer bond shows up. I have no other ailment that inspires such close bonds. ACL injuries? Nope. Fibromyalgia? Nope. Thyroid cancer? Nope. Rheumatoid arthritis? Nope. Breast cancer? Yep! Big time.

I think its a spin-off of all the unity behind pinkification. You get breast cancer and someone wants to stick a pink ribbon on you so you can become best pals.

How can I sit?

My newest advice is don't sit with your legs crossed. The reason for this with my bad knees is that the amount of torque that is put on your tibia when you do that is very high. My right knee (the one with the partially torn ACL) popped and I couldn't move or straighten my leg. It took about 15 minutes before it started to feel better.

I asked the physical therapist at the gym. He was the one who told me I shouldn't sit with my legs crossed.

So if I sit down on the floor, how am I supposed to sit? I can't sit with my legs out straight. I can't bend them to one side because my back would complain. Don't even think about kneeling. That is not possible. I can't stop sitting on the floor either. Sometimes you just need to sit down an take care of something.

All I can say is crap!

When Will I Learn?

The answer is not anytime soon. Yesterday I went to a craft show and had a booth. I had a blast. I sold tons of my stuff and had a lot of fun at the same time. I might have even made a new friend.

But obviously I am not the best candidate to leave home at 620 AM to get to the show at 7 AM, set up my booth, sit and stand for hours, and break down my booth, and drive home to get home at 530 PM. I also lifted things, dragged things, set up folding tables and a canopy. I pulled things out of my car and then put them back in. I did all those things my doctors are telling me not to do - lift, carry, twist, push, pull, etc.

Today I am paying the price. I am sore and achy. I am sore in places that haven't hurt in recent years. My right knee, which has a partially torn ACL for the last 15 years, is now complaining. Significantly. I think I need ice and elevation for a while to make it feel better. Then I can tell you about the place in my back which had injections on Thursday. Its very unhappy.

So when will I learn? I need to learn that my body is not built for any of this any more. I need to learn to be a nice sedate quiet person. (I almost typed 'sedate little old lady' but I am definitely not ready for that classification. I want my tombstone to say something along the lines of 'that was one hell of a ride'. And I doubt I will ever be called sedate, unless it was in the context of being sedated, queue the Ramones song now.)

I may need to sedate myself to get through the next 24-48 hours. 

But I really need to learn to stop over doing things now so I stop needing to recover from them. 

So What Does RA Feel Like?

There is a big difference between rheumatoid arthritis and osteoarthritis. Osteoarthritis is the kind from overuse that causes your knee/elbow/hand to hurt when you over use it, or maybe even when you aren't using it. Rheumatoid arthritis is systemic and starts with your little joints - like your feet and hands. The joints become achy and bulge and more.

This article explains better than anything else I have seen on what RA really feels like:

Like the fatigue and exhaustion after climbing a mountain or running a marathon.
Like the aches and pains after a significant fall or being in a car accident.
Like the full body aches and pains of a bad case of the flu.
And the stress as you wait for a flare to happen and make all the aches and pains start again.

"However, in order to truly understand, you must envision your injury, the flu, and the exhaustion all occurring at the same time. You must accept that your body would not heal in a few days, you would not be refreshed after a night of good sleep, and your ‘normal' would forever be compromised. But like all RA patients, in time you would learn to adjust. Having Rheumatoid Arthritis is not the end of the world it's just another way of living in it."

Not only that you can't forget the mental confusion sort of like chemo brain.

This is part of my life. And add in all my other health issues and I am the picture of health.

Finally Some Good News

You can balance out the damage of drinking by exercising. Doesn't this sound too good to be true? It does, and its also true.

New research has been done over years that show:

• It is impossible to stop people from drinking alcohol - in general. They have passed laws and tried all sort so different things. Even in cultures where alcohol is forbidden, alcohol is still drunk and abused. Alcohol abuse causes a lot of damage to people's bodies. 

So researchers went on another tack. What can be done in order to help people's bodies recover from this abuse from drinking alcohol, not even when it is not abused. Meaning when people drink in what are considered 'normal limits'.

Well there is a 'miracle' cure. Its called exercise. Yes, exercise. The results from the study are:

"Exercising the recommended amount "appeared to wipe off completely" the inflated risk of cancer death resulting from alcohol, said Stamatakis. Similar physical activity also offset the increased risk of all-cause mortality linked to drinking. Exercising more provided slightly better results."

I will continue to do my 3 hours of cardio a week. And maybe feel less guilty about drinking wine with dinner.

I Am Done Making Lifestyle Changes

When I was 19 and diagnosed with thyroid cancer, after treatment the doctors told me to stay healthy, take care of myself, eat right and get plenty of rest. Um, great advice. I was in college so it did not exactly fit my lifestyle.

But I did put some deep thought into how I was going to live my life. Having cancer sucks (if you want to disagree with that, please let me know). It was a big wrench in my life. A huge elephant in the room. And one I was not too sure how to approach (there was no social support for cancer people in 1981). However, I decided cancer was not going screw up my life.

I made the decision that I would try to live a healthy life style. I was going to make sure I took care of myself. But I wasn't going to let cancer interfere with my life.

But then cancer decided to show up again nearly 26 years later. I did make some lifestyle changes during chemo. I did change our eating habits to include more fruits and vegetables. I made sure any processed foods were removed from our diet, not that there were that many. I finally quit smoking.

Now, nine years later, I think I am done with altering my lifestyle. I know my primary care doctor is going to tell me to eat more vegetables and stuff like that. But I am done with that.

I enjoy a glass of wine and am not going to stop drinking. I try to get plenty of sleep. I mostly eat right (but some how a bag of potato chips fell into my grocery cart last week). I try to eat plenty of fruits and vegetables. (Potato chips are vegetables aren't they?)

I have enough going on that I am not going to make any more lifestyle changes. I have so may issues right now with my health. I think I have made enough changes. The only way I am making more lifestyle changes if they will cure cancer and get rid of all my other ailments.

Sometimes We Just Don't Care Anymore

Yesterday I ran into a friend and we chatted for a while. I have been dealing with my usual ups and downs health wise and some emotional crap. She has also been through a round of health stuff and emotional stuff. We caught up on the most important things going on in our lives for a few minutes and touched on some of the items we have been coping with. We both said sometimes we just don't care anymore.

Call it being overwhelmed. Call it whatever you want. But we just don't care. As a professional patient, sometimes you get so inundated that you really don't give a s**t about anything. Coping with our lives gets so complicated that we just don't care, unless there was something near term fatal, there is nothing that is that important.

I have my annual physical this week and we will talk about my back pains and maybe I should have more imaging on it. Maybe I should have a lot more imaging and testing but I really don't want it now. Unless my doctor tells me I need immediate treatment for something so I don't die, I'm happy to wait. I have so many ailments that how can I have anything more?

My friend, who also has gone through her own personal roller coaster, agreed with me. Right now, she only wants to take a couple vacations and doesn't want to think about emotional or health issues for a while. After she does some travelling, we are going to get together at the end of October for coffee to catch up. Maybe by then we both will care about things again.

That Upcoming Month

This month is September. You know that first month of fall where you can feel the first crispness in the air (especially here in New England), back to school, and all that. It is also:

• Childhood Cancer Awareness Month
• National Pediculosis Prevention Month/Head Lice Prevention Month
• National Recovery Month
• National Sickle Cell Month
• National Traumatic Brain Injury Awareness Month
• Ovarian Cancer Awareness Month
• Pain Awareness Month
• Prostate Cancer Awareness Month
• 18 National HIV/AIDS and Aging Awareness Day
• 22 Falls Prevention Awareness Day
• 28 National Women's Health & Fitness Day

The full list contains many more awareness topics. (And the head lice one makes me cringe.) No where does it include the 'Brace for Pinktober' which it should.

Next month is Pinktober, formerly known as October which used to be about Columbus Day, Halloween, costumes and candy, and has some how evolved into being all about pinkification. Instead of everything else which include: 

• Domestic Violence Awareness Month
• Eye Injury Prevention Month
• National Bullying Prevention Month
• National Down Syndrome Awareness Month
• 6 National Depression Screening Day ®
• 12 - 20 Bone and Joint Health Action Week
• 13 Metastatic Breast Cancer Awareness Day
• 16 - 22 International Infection Prevention Week
• 16 World Food Day
• 22 International Stuttering Awareness Day
• 23 - 31 Red Ribbon Week

Personally I think bullying is way more important to many more people than breast cancer because everyone has experienced bullying in some way or another. I have no idea what Red Ribbon week stands for but it is probably covered in pink as well. However it and all the other causes in October have been covered in a big pink blob. And the saddest part is that Metastatic Breast Cancer is buried under that big pink cloud and should get more than a day and a lot more focus.

But I digress. This is time for all of us to put some thought into this and ask ourselves how we are going to avoid pinkification in October. We have almost a full month to come up with ways that do not include the color pink.

(The full list of National Health Observances can be found here.)

My Achy, Achy Back

My back has been very uncooperative recently. Actually its been a real pain, or in a lot of pain. I went to my pain management doctor a while back and he said that my back has been so bad because I haven't had any interventional treatments (a/k/a needles in my back) in a while and its time for another one. That is due for this Thursday.

But in the meantime, my back is giving me lots of grief (to put it nicely). Yesterday and Friday I was walking around hunched over in pain most of the time. My husband even cooked dinner because I was in so much pain.

Last night, I got in bed before 8 PM and took a breakthrough pain pill, an arthritis Tylenol, and a sleeping pill. I didn't wake up until 8 AM and my back feels better.... but not that great. I expect it to act up later today but I am happy with a few mostly pain free hours for now.

I do not expect a massive decrease in pain after Thursday's medical misadventure, but I do expect some improvement. And future needles in my back to help with this.

Unmet Needs of Cancer People

Finally someone figured out that there might be unmet needs of people after a cancer diagnosis.  A study was recently done:

"Cancer [people*] face unmet needs. These are needs which lack enough service or support for survivors to achieve optimal well-being. Understanding the needs of cancer survivors can help guide services and support to meet the needs of [people*]."

To complete this study, they asked over 9000 people one question: "Please tell us about any needs you have now as a cancer [person*] that ARE NOT being met to your satisfaction". Only one question. But they could answer how they wanted and then they sorted out all the results.

Here are the answers:

Physical needs: 38.2% needs affecting the body, including pain, symptoms, sexual dysfunction, diet, exercise, and rest. 

Financial problems: 20.3% 

Education and information needs: 19.5% needs which were related to unanswered questions and the lack of information about cancer. 

Personal control problems: 16.4%  related to one's ability to maintain autonomy over one's body. Health care system needs: 15.5% 

Access to supplies, medications, and transportation services: 13.8% 

Emotional and mental health problems: 13.7% had emotional and mental health problems

Social support needs: 12.7% 

Problems with social norms, discrimination, misinformation, and policy: 10%

Communication needs: 8.5% 

Problems with their relationship with healthcare workers: 8.25% 

Some groups had more than one problem, in fact women with breast cancer had an average of 2.88 unmet needs.

I was glad to see some kind of research into this. I feel that the medical profession takes care of you during diagnosis and treatment and then that's it. You get a 'come back and see me in 6 months'. And the patient is left grasping at straws. So of course there are more needs for the patients. But the bottom line didn't do much for me at all:

"The authors concluded that the needs of cancer [people*] are important and should be researched further."
I'll just hope for more research.
*I can't use the S-word, I find it offensive.

I Am No Longer A Morning Person

I used to be a morning person. Really. In junior high and high school I would even get up and go ice skating for an hour or two before school. This would mean being at the ice rink as early as 545 AM. I was never the kid who stayed up late. I always went to bed early. In college I only managed to stay up late and practiced the art of napping regularly. That way with a nap, I could still go to the keg party until 2 AM.

When I met my husband, my big fear was that he would be a late night person. That was quickly proved wrong. We both think going to bed at 9 PM is normal. (And we like reading books.) As a military guy he thinks 0500 is a normal wake up time. (It was a match made in heaven.) And every time I saw 0500 I think of Whats-His-Name in Good Morning Vietnam where the 0 stands for Oh-My-God-Its-Early. When I worked full time that was good. We both got up early and went to work. I was often one of the first ones in the office which would mean I could leave by 5 and get home to my husband.

Now I don't work. I need more rest and sleep. When I go to the gym, I usually plan on leaving after rush hour so I can sleep in as needed. I sometimes get up and sometimes I sleep in. I am no longer a morning person.

But every so often, I hate myself because I let my schedule mess me up. Today I am getting my nails done at 1015 AM. That means I need to go to the gym before then. (You can't go to the gym after you get your nails done because it will mess up your toes.) To allow time to drive to the gym, work out, shower after the gym and get to the salon on time, I need to leave here around 7 AM. Eek!

Why did I do that? Why, why, why? The easy answer is I had to post pone my nail appointment from last week and this was the only time available. I hate getting up this early now.  I am no longer an morning person. Maybe I can take a nap this afternoon.

A Post for Sick People

As a follow up to my earlier post for Friends of Sick People, here's a post for my advice for people who are sick.

As a patient with an icky medical diagnosis, you need to remember the most important person you need to take care of is you. I know you love your children, spouse/partner, and other people close to you but you need to focus on you for a bit. You will need more rest and care than usual. You will spend a lot more time at doctors and other appointments. Any time when you are not at work you will probably be focused on your (lack of ) health. Nap time!

You may find the need to set some rules and requests for other people. You are not being rude, you are letting other people know how they can best help you. You need to rest and take care of yourself, go to doctor appointments (and then recover from them).

Personally I decided I needed to limit social visits and phone calls. Newly diagnosed with cancer, and a cascade of additional medical issues, I decided I was not going to answer a thousand phone calls, texts, and emails asking the same (damn) questions and decided I would provide information for others in my blog. If anyone wanted to know how I was doing, they need to read my blog (unless you are my parents, they are allowed to ask me questions or my husband who went with me to all important appointments). If people wanted to come over, their visit had to be short.

People often want to be helpful but are unsure how they can help. If someone says anything about any kind of help, you can give them concrete ideas on what you need. A casserole for dinner? Help with laundry? Do you need someone to help get your children to school on some days or maybe even getting you to the doctor?

And its not just the physical issues but also your emotional self. At my second cancer diagnosis I decided I needed emotional support and joined a support group before my second surgery. I wasn't going to let cancer suck any more enjoyment out of my life.

If you feel you need more emotional support, start with your doctor or a social worker at your local hospital. They will have access to information on where you can find help. In addition, look for local support groups through your church or local support centers. And the stress? I'm not going there.

It is important to remember that the most important person, emotionally and physically,  is the one with the ailment.  Don't forget!

The Summer Ran Away

How did it get to be the end of August already? I do not know how that happened. It vanished. I do admit to having a decent suntan (just don't tell my dermatologist). I did spend the better part of two weeks floating in the ocean. My garden did pretty darn well considering the drought.

But how did it get to be the end of August? Kids are going back to school already. I have seen fallen leaves on the lawn. I am not ready for the fall.

Last winter was very mild for us, except one day of extreme cold. The year before was horrible. It was the year of 10' of snow around here that didn't melt for weeks. The long range forecasts are projecting a cold and snowy winter. I really am not ready for that.

I saw Christmas decorations in stores last week. I was appalled.

I am not ready to stop going to the beach. I will even go in the winter. I just wish it was the beginning of summer instead of the end.

Annual Physical

I am just fine. I am damn happy. And perky! And feeling no pain. No that's a big fat lie. I have a lot of pain. I ran out of steam yesterday. I was very tired by the end of the day. Apparently I did too much. All I did was go to the gym. And then the library and one store. That was it. I was wiped out. I even took a break after the gym.

Next week I have my annual physical. I have two options: go in and lie and say everything is fine, or go in and tell the truth about how I feel. This could put me back on a medical roller coaster of a sort. At this point I am not concerned with out going back on the medical roller coaster as I am with being as healthy as I can.

I do not think I have something bad going on. Its just my annual chance to sit down with my primary care physician and go through how I am feeling, what are my concerns, and what we can do to make me do better, or even improve my health - now that's an interesting concept.

Now I just have to make a list of what I want to talk about. Damn.

A Post For Friends of Sick People

Barbara over at Let Life Happen blogged about visiting breast cancer patients. I feel this is a greatly ignored topic and want to add my two cents on this for the benefit of all patients.

First of all, before you visit a sick person, put yourself in their shoes. When are you feeling awful, do you want to entertain someone for hours? Do you want to answer dozens of phone calls asking the same thing? Don't you want to sleep or watch bad TV or sip herbal tea in your bathrobe with fuzzy slippers on your feet? If you are in pain, what is your preferred activity - lying in bed with your tablet or sitting up in a chair talking to people? Please think first before you go visit someone who is ill or even call them.

Second of all, if someone is in the hospital these days, chances are they are not doing very well. I have never gotten a good night's sleep in the hospital (because my blood is best between 3-5 AM when they come to get it and wake me up). I am probably not feeling well and am usually cranky as a result. I am probably in my pajamas (or a lovely Dr. Seymour Butts hospital gown) and not looking my best. Chances are I am in pain as well.

Never just drop by because you 'were in the hospital'. A few years back, a friend 'dropped by' because she had some blood work done at 8 AM on the day after a major surgery. A very bad thing to do. I don't know what she was thinking. Visiting hours didn't even start until 11 AM. I was in a lot of pain and really didn't want to see anyone.

Having a party in someone's hospital room is a really bad idea. A friend had heart surgery in his early-30s. My then-boyfriend and a bunch of other friends were going to visit him at the hospital a day or two after surgery. I refused to go. Why? Because I had been a patient and had surgery and knew I would not want that many visitors for a few hours a couple of days after surgery.

I can't tell you how many times in the hospital, I have seen hospital rooms full of a dozen visitors for several hours and the patient is dozing in bed (probably wishing they would all just leave and let them rest). A hospital room is not a party room.

Once a patient is home, that doesn't mean the door is open for non-stop visitors. They probably want to rest and recover. They might have visiting nurses and PT/OT for a few weeks. If you want to visit, call first. If you don't get them, leave a message and wait for them to get back to you.

Honestly the best bet for visiting someone after surgery or who is ill enough to require hospitalization is to call before any medical misadventures and ask about visiting them afterwards. Do not assume anything. Some people may welcome visitors and some may not. You cannot know unless you ask. Also, you might want to offer to stop and get them some groceries or bring a casserole. Just ask first.

When I am in the hospital, I tell everyone the only ones to visit me in the hospital are my husband and my immediate family. Everyone else can wait until I tell them I am ready.

Finally, if you have been exposed to or are harboring any germs yourself, stay away until you are healthy.

Good News/Bad News

So the good news is that heart disease is becoming less of a problem for many Americans and the death rate is down. But the bad news is that cancer is beginning to take over as the leading cause of death of Americans. It is already the leading cause of death for Asians and Pacific Islanders.

Well whoop de do. Does that make me any less likely to die of heart disease or cancer? Not really.

Exercise for Memory???? Or Cancer Causes Stress.

A new study (because we all new more studies) says that exercise can boost memory for breast cancer patients. What? I exercise and my memory is shot, getting worse every day. I don't believe it.

The theory is that exercise alleviates stress and benefits women psychologically which improves their memory.

"A surprising finding is memory problems appear to be related to the high stress load cancer survivors experience, and may not be specific to chemotherapy or radiation treatments."

That's surprising? To me this is even more important than figuring out that exercise improves memory. Seriously, I could have told you that a cancer diagnosis causes incredible stress. It just amazes me how many people do not get that part. Obviously they haven't been diagnosed with cancer. 

Stop Comparing

When I was diagnosed with breast cancer, I quickly learned every person's cancer is different - even if they have the same diagnosis. (This is why it is so hard to treat.) I learned not to compare myself to anyone else. In every support group, even if we had the same diagnosis, we learned how different all are.

I get this. We are all different. We can't compare our cancers to each other.

But.... why do I keep comparing my rheumatoid arthritis to others? I have to stop comparing myself. My mother has had RA since 1989 and a friend (exact same age as me) has had RA since the early 2000's. Their differences are striking. My mother was diagnosed when they only treated RA when it became symptomatic so she has many of the deformities and issues common among patients treated according to the old standards. But her health is much more stable than mine. My friend has had RA and has very few problems. Until she retired (for non-health reasons), she worked full time including much business travel and long days.

Me? I struggle with fatigue, pain, and more fatigue and more pain. How did I get to be so special? I try not to compare myself with my friend but I do.

As medical diagnoses go, everyone is unique. It doesn't matter if three people have the exact same diagnosis but because of their genetic make up, medical history, and other issues, each is unique. No two are alike (boy am I glad I am not a doctor trying to cure people). And everyone interprets everything different. Some people might be distressed by a little nausea and others may not think it significant.

The lesson that I need to better learn is that I need to stop comparing myself to anyone else's medical stuff. I am unique and so is everyone else. I just need to focus on this life lesson. I think I will stop whining as much if I did. Everyone else will appreciate that part.

Has A Cancer Diagnosis Changed How You Think?

I was reading over at KatyDid Cancer that she turned 41. After being diagnosed with breast cancer before 35 she was never sure she would get to 40, or 41. (But now she is thinking 50.)

This made me think. How do I think about how long I will live? And how would I think differently about how long I would live if I had never had cancer?

At 19 (and invincible) I had no thought of how long I would live. Because I was barely an adult and between my freshman and sophomore years of college. And longevity was the last thing on my mind. I just assumed it would be shorter than without cancer.

At 45 I was more responsible and married with a second diagnosis. The thought of how long I would live definitely popped up again. But what was most concerning was how would I have thought differently if I had never had cancer? I have struggled with this one: how had my life been impacted by cancer which was something I never wanted. 

During the intervening years my thought processes had changed of course. But how would I have thought different if I never had cancer? I never really had a chance to be an adult without cancer so I have no idea on what I would have thought.

But since I can not undo the past, I have to settle with my current thoughts. Which doesn't give me any good answers.

I Am Feeling Stressed

I didn't blog yesterday and am a little late today because I hadn't really decided what was going on with me. Finally (call me slow if you want) I decided I am feeling stressed. And I am beginning to figure out why I am so stressed. I have a lot going on. Nothing major medically but just too much stress for me.

Last month, in the spirit of doing something good, I decided to convince my husband we need to adopt a third cat. As soon as I asked about where are the good local shelters someone offered me her two cats that she needed to get rid of (because her son was moving home with his dog who didn't get along with the cats). [Maybe the son shouldn't have been allowed to bring his dog home.... but its not my house so I kept my mouth shut.]

We waited until we got back from vacation and picked them up a week ago Sunday. When we went to pick them up my husband said 'you are making a mistake' but I still thought I was doing something good.

They were two incredibly obese orange tabbies that had been locked into an unfinished room in the basement without windows for 'several weeks'. They were not in good shape. I still thought I was doing something good.

We brought them home and put them into a separate room and I put them on diet food. Except Sunday afternoon we had two cats. Monday we only had two cats for a brief period of time in the afternoon. Tuesday afternoon we had two cats for about 5 minutes. This Sunday morning, after reporting a lost cat to animal control, we then had two cats again at about 4 am. We also had two cats for about 30 seconds at 5 am this morning. One of them (I think its Jake not Ginger), can jump over the baby gate we have keeping them in a separate room. He keeps hiding in the basement (we think).

This morning I found someone had pooped on the laundry room floor and someone else had tossed their cookies on the rug in the finished part of the basement. I decided that's it. They have to go back. We took them conditionally - if WW III broke out in our house, they had to go back. Right now we have four cats who keep hissing and growling at us and each other. I can't take it.

Ginger (or whichever is not lost living in the basement) meows all the time when he is hungry - which is all the time because he is on a diet. He keeps me up. (Who names a boy cat Ginger anyway?) If I close the door to either his room or our room, I can still hear him meow. I don't sleep well because of my pain levels and other health issues anyway. And if one cat is not meowing, another one is, or growling, or hissing at each other and having a 'conversation' that keeps me awake.

I really wanted to do a good thing but I can't do this one. I need to take them back asap. Like this afternoon. I am getting rid of one today around 6pm. I just have to find the other one so I can take them both back.

I do feel guilt. But I also believe that I need to take better care of myself. I felt my stress level go down after I made the decision. I called my husband and he is okay with my decision (and is probably telling me that I was making a mistake in the first place.

I am not in the position to do good deeds until I am in a better place with my place (in a few thousand light years).

I'm Not Suffering From Anything

I am not suffering from anything. I am living with a bunch of medical ailments, among them insanity.

Suffering sucks. Living is good. Its all about attitude in life. I think if you let yourself only see the downside of life (the half empty), you will miss out on the positive (the half full). So live with what you have and stop letting yourself suffer.

And enjoy your ride with your insanity