Progress

My life is progressing nicely I should say. I am doing okay for once. I just got my latest blood work done and most everything is about as expected. I do feel some RA progression and have a dr apt next week to discuss what's next.

I have painted some more walls in our house. Eventually I think every wall will be painted. Right now I have done 1 bathroom, the walls on the stairs, and half our bedroom. That means I have a lot left to go but I like the progress I have made.

Back in February I blogged about starting a knitting group at a local cancer center. The first meeting I showed up at 1pm because originally we had said 1 pm, but it was switched to 1:30 pm. And there were two other people waiting for the start when I got there. Then more people showed up and we ended up with seven people the first week. It was also supposed to meet every other week. Participants requested meeting weekly and asked if we could stay later. So we will just say that it is very successful. And the best part is that one other woman who attends is an madly amazing knitter and she can help more people that I can.

Finally, I haven't had a doctor appointment in more than three weeks - a very rare occurrence. However next week I have three doctor appointments to compensate. Back to reality I guess.

About That Positive Attitude

Having a positive attitude with a bad diagnosis can be like putting lipstick on a pig.

The pinkification of breast cancer includes that perky little attitude with perfect make up and a big smile. Sorry but some days I just don't feel that way. I read this article about how the positive attitude requirement of breast cancer or other icky diagnosis can lead to a feeling of guilt. Um, yup.

Cancer (and other icky diseases) bring a whole range of emotions and some days, especially during chemo, a positive attitude can be fleeting. Or just not there if you are working on keeping your lunch down again. And after treatment its the same thing. And, as I said, its not just with cancer, but any crappy diagnosis, a positive attitude doesn't always happen.

I can tell you that my positive attitude can be virtually non-existent many days. Sometimes people ask me how do I do it. I think what are they talking about? I am just going through my life and putting one (aching) foot in front of the other (aching foot). Please don't tell me you are amazed by that. I'm not amazed. I'm just getting through my day.

The ever knowing 'them' tell us to keep our positive attitude. It will help us get through treatment better, prevent depression, and make us better people. Well, lah-di-dah, I try but I'm not going all out.

And if I am so happy and perky, what happens when I lose a friend or my next scan isn't as hoped? I'm not going to be so perky am I? And maybe I'm not going to be so happy. I might even feel a little guilt about my lost friend. And more guilt about a bad scan. What did I do wrong? Why did this happen to my friend?

That so-called required positive attitude can be a pain in the butt. I know it takes drugs and therapy to get through life sometimes.

Saving My Strength

I am saving my strength for a test of my endurance later this week. I am driving to visit my brother. 384 miles or 5 hours 36 minutes away per Google Maps. All by myself.

This is my annual trip to visit his place, this year in his new place. I go out and annoy my brother and have fun with his kids for a few days. Then I drive home. All by myself.

In recent years, I have noticed my ability to drive long distances is less than in the past. Also when I get there, I am really tired. Driving is the one thing I can do that day. And I have to drive home on Monday and get back in time for a 4 pm doctor appointment.

Anyway, will I be exhausted all weekend I think. My brother suggested going for a hike. I don't think so.

But I really want to have fun with my nieces and nephews. There are four of them. Two have birthdays in the fall and two have birthdays in the spring. I have given up finding birthday presents for them so I take them shopping and they get to pick out what they want. It also gives me a chance to spend time with them individually. We go on my annual spring trip for the spring birthday kids and then at Thanksgiving for the fall birthday kids.

The other reason I go is to annoy my brother in person. Actually I like spending time with him and as we get older it gets harder and harder to find them time.

Is it possible to save my strength for this? I am not sure. I just know I will be very tired when I get there. And even more tired when I get home. I am not sure my husband will appreciate my resulting crankiness.

Language Please!

I am not very happy with the language used to describe people who are less than healthy. Just like the mental health community has changed their words to avoid calling people the "R-word", we need to get rid of some other words as well.

I'll start with that awful S-word, the one to describe people with cancer. Ditch it. Please. I didn't survive anything more than a boat load of doctor appointments. And by the way you can get rid of all those war-related ones too. The B-word (battle) is another awful one. Fight? Fighting a cold is okay because I think its a short term inference and I can live with that. Fighting cancer? Not so good.

Next there is another S-word, we'll call it S-word2, or 'Sufferer'. First of all its hard to say. Eat some peanut butter and try to get it out. I suffer from pain, not a disease. And don't call me that word either.

What are good words to use? I can be someone living with cancer, rheumatoid, or fibromyalgia. Or I could be an arthritis patient. But I would really just like to be a person, not a statistic, a number, a survivor, a sufferer, a battler. Just a person.

Going to the Beach!

I am so excited. I haven't been to the beach in months. Not since sometime early last fall. this is very unusual for me. I like to go to the beach year round. I don't swim that much but I like to walk in the sand with my toes in the water. See what the tides have brought in and how the storms change the coastline.

My husband thinks I am weird crazy insane for insisting we go to the beach in the winter. But I have convinced him that he will like it because we go out for clams (and he gets a beer) afterwards.

I have wanted to go to the beach for weeks months but either our schedule didn't work or the weather was not cooperative. I draw the line at going to the beach in a blizzard, a snow storm yes, but not a blizzard. I do have my limits.

But today we are going to the beach. I can't walk on loose sand and the tides aren't the best - coming in, not going out. We enjoy fresh air and a breeze off the 40 degree ocean water which will make it a bit chilly. Then we will take the Sunday paper to the clam shack to read while we wait for our food.

It may not sound like much but there are so many things I cannot do any more because of my health and this is one thing I can do and really enjoy. Its the little pleasures in life that keep us going.

Deadline 2020: I am very disappointed

I have never been a big fan of the whole Deadline 2020 (to end breast cancer by January 2020). How can you put a deadline on something like that? Apparently back in 2010 some people decided they were tired of scientists setting the research agenda time line so they decided to create their own deadline. How illogical... how over simplified.

Through my blog reading, I read the latest updates from other bloggers. One of them, Jennie, went to the recent Deadline 2020 people's meeting, which the metastatic breast cancer community calls, Deadby2020, at a high end resort in Napa Valley. I am flabbergasted that they can send a bunch of white healthy people to an expensive resort (that could be held in a Holiday Inn conference room in a cheaper area of the country) to discuss a topic while leaving out important portions of it. (Read Jennie's blog post to get all the details.) Perhaps there should be an investigation into misuse of funds here as well.

One problem is the Deadby2020 people ignore metastatic breast cancer and only focus on prevention, and women, and white women only (if their meeting is anything to go by). This leaves more than 40,000 people dying each year from the disease. And Jennie acted  in the normal fashion of the metastatic breast cancer community and started live tweeting from the meeting. And was cornered and told to stop. This was after she was cornered and told to stop bringing up metastatic breast cancer.

I can't believe how rude they were to her. How selective they were to her. How unconcerned they were about her feelings and sensitivities. I have run many events myself and can understand how one person with questions can appear to alter the focus of a meeting. But if they are too narrowly focused they are not benefiting anyone. It would have been better if they had stopped their agenda and added a session on metastatic breast cancer and what can be done about it.

Also the concept of holding such an event which does not accurately represent the people they are trying to help while excessively spending (rooms start at $540/night), in my opinion, is basically unethical and irresponsible.What were they thinking? Or not thinking at all?

So, if you have dollars to donate, I would like to ask you to not donate to the Deadby2020 people (National Breast Cancer Coalition) and give them elsewhere which might be more inclusive and more representative of the people they are helping..

I Am Too Tired

You know you are tired when people you don't really know tell you that you look tired. At the end of my knitting group yesterday, people told me I looked really tired. I went home and got in bed for a few hours. I did get in bed long enough to cook and eat some dinner before going back to bed.

Yesterday I knew I was going to have a long day. I had a long postponed appointment to return some volunteer materials to an organization for which I am no longer able to volunteer. They were meeting me half way but I still drove over 150 miles round trip. And went to my knitting group. I was gone from 9 am to 430 pm which is a very long day for me now.

Today I am contemplating skipping the gym because I am so damn tired. Yes I am that tired. But I still have other things I need to do today. The most important is getting my nails done - and that doesn't require much effort. Actually more important is I will stop by and see my parents.

I know going to the gym is a good thing but I think it might be better for me to save my energy and continue to rest. If I don't go to the gym, I can stay in bed for most of the morning, which is something I really need.

I have to do something about my life to slow down. In the last few months, we have been busy. Last week we went out to dinner twice. I have taken care of a bunch of loose ends (like driving so far yesterday) and life is calming down. But gardening season is approaching and I still need to finish painting. Maybe its time to hire someone for that.

I want to add I am not a lazy person. I just have a very finite amount of energy each day and I seem to have used up too much energy earlier this week and need to rest to recover. Its sort of like having a really bad cold or flu where you don't have the energy to move from the bed to the couch because its too far and would take too much effort. I wish it would go away but there is not much chance of it.

Another Ailment (In Pictures)

Recently I discovered this really neato nifty cool article on BBC of the 20 best science pictures of the year. Do you have any idea what a stem cell really looks like or a moth's scales? Who knew? Definitely worth the look.

But what really caught my eye was this picture:

Look at all the colors! Aren't they awesome? And then you wonder why are they different. That my friends, is my point.

"From multicoloured scans of parts of the human body to vivid photos of creatures up close, the finalists of the annual Wellcome Image Awards have been announced.

The thermal image above shows the temperature of two people's hands - a healthy person on the left, and someone with Raynaud's disease on the right.

Both hands were put in cold water for two minutes before being imaged. The healthy hand then warmed at a considerably faster rate.

"This image is striking because it shows so vividly the difference between normal circulation and the poor circulation of someone with Raynaud's disease - triggered by cold temperature, stress and anxiety,"..."

And yes I have that ailment, Raynaud's too. Some where I have pictures of my hands where my fingers are pure white, as if a line was drawn with a ruler - one side white and the other side almost normal.

My husband has long complained that I have cold hands and feet (that I warm up on him). With my diagnosis Raynaud's a couple of year's ago, I have to be very careful with my hands in the winter. Sometimes when I would leave work in the winter, even if wearing gloves, my hands would be so cold that I could not warm them up until I got home. 

So just another little part of my life. But the colors are really cool.

Hospital Safety

You go to for an appointment, see the nurse first to go over medications, get weighed, maybe get some tests, and the results, finally see the doctor and then there's a follow up where you start all over again and maybe throw in a medical misadventure or two. Repeat over and over again. At each stage of your visits, you get weighed, vital signed, medication list reviewed, and talk to numerous people, repeating the same information ad naseum.

Most of the time every thing goes okay. Sometimes it doesn't. And who's fault is it? The question should be asked. And also how is it going to be fixed. This is the main concern. How will the hospital fix this so it doesn't happen again? As patients, usually we will never know. We just assume someone at the hospital will say 'we need to fix this'.

But now at Brigham & Women's Hospital in Boston, they had decided in the interest of full transparency, they provide a blog on their Safety Matters. Previously a PDF, it became a blog last year and now is available online to all. It discusses a recent safety issue and then reviews what is being done to correct the situation. In January's issue, for example, a patient was given the wrong dose of a medication. It goes through what happened, how did it go wrong and how it was fixed.

What I find most interesting is that it shows the entire process, how it works, and what went wrong. What surprised me is that how many times the patient gave the information and it was never verified. What would it take for just one person to verify the information? Seriously.

I know sometimes when I go to for an appointment, I feel I get rushed by the nurses and not as much care is given to review information - when the nurse asks me what I weigh instead of weighing me on the scale next to her or when they never even look at my amended medication list.

I do know that now that I have read several issues of Safety Matters, I will start doing more of my part to make sure I bring all my information with me to visits. And no I will not switch to BWH just because of their blog.

Warning: A Cynical Post

They, the infamous, all-knowing 'them', say that after a cancer diagnosis, in one year you will reach your 'new normal'. As I have said before, the whole new normal thing is bogus and not worth seeking because it doesn't exist.

And its not after a year either. That year concept is wrong. First of all, your treatment may not end in a year. You are forever changed and even if your body returns to something resembling your previous body, your mind has been irreparably scarred. At every doctor appointment or test or scan for the rest of your life there is that evil little voice that says 'what if....'. It also shows up in the middle of the night when you can't sleep, or it wakes you up.

Also there are the people, like me, who find that after that cancer diagnosis, your body continues to rebel and send you down the never ending medical spiral of more ailments. While in chemo, in addition to growing a benign breast tumor, my gall bladder developed gall stones (a completely separate ailment) which led to surgery. Other people I know have developed cardio issues and other treatment side effects. And the women who chose reconstruction face additional surgeries. Never mind all the people who suffer from significant side effects from treatment and surgeries.

I am lying in bed this morning, waiting to take the (damn) cats to the (damn) vet. They are sleeping peacefully next to me but I know at the first sign of the dreaded carriers, I will be faced with the game of 'chase' with me chasing them so I can stuff them in their carriers. Full carriers are hard for me to pick up and carry to the car. When I arrive at the vet it will take two trips to get them inside. But they need their physicals and shots and exams (which they will hate). When we come home they will hate me. And my back will be killing me.

And I hate it that my body no longer allows me to do all the basic things in life that I used to be able to do. I am frustrated with my pudgy body that makes that is difficult to lose weight.

Yesterday I finally finished the latest request for information for my SS Disability application which includes asking me about how my ailments have changed my life from before when I was sort of healthy to after when I can only when I can watch everything I used to like or that used to be easy for me that are now a struggle. I really do not need reminders of the things that I can no longer do.

Pause. Deep breath.

Sometimes my inner cynical b*tch comes through and needs to vent. Maybe this is why I need therapy to cope.

Sympathetic or Over Sensitive?

When you were diagnosed with cancer, didn't other people with cancer come crawling out of the woodwork? You met all these people to talk to about cancer and help you through your diagnosis and treatment.  You got diagnosed so you can talk to other people in cancerland. That is fine, actually pretty cool. Its actually nice to bond with people who are coping or have coped with the surgeries, chemo, radiation and all that other 'fun' stuff.

But then, if someone you know knows someone else who was diagnosed with cancer, do you feel like they rush to tell you about it? Or are they asking questions of you to help their friend? Or are you just being hypersensitive?

I remember when I was in college a couple of years after my thyroid cancer diagnosis, a guy I knew was diagnosed with cancer. He was brought to a party by a mutual friend who brought him over to me so we could talk. He had a late stage brain cancer, only lived a few months longer, and was in a wheelchair. It was actually great to get to know him better but a very sad conversation.

Afterwards I started thinking (which I should never do, I know) and almost felt like I was expected to talk to him because we both had cancer so therefore we must know each other and be friends. Even though our cancers were completely different on all levels.

Since my breast cancer diagnosis, I have been more open about my medical history and talk to people all over all the time about cancer and other medical issues. I am happy to talking as many people who want to talk to me about medical crap (all cancer is crap).

I had a nightmare dream last night that I met up with an old friend from college (who's brother was married to someone I went to high school with) who was going out for a big dinner an hour before his last hope surgery for lung cancer at a time when I was also hospitalized. In my dream, I felt very stressed about my old friend (who was a melange of a bunch of old friends) being so sick and running out of options when I was hospitalized only for a minor issue and went home the next day. (And who goes out for dinner before surgery?)

When I woke up I felt I had been very put upon my by high school friend and her husband because I had cancer I was supposed to be the 'caretaker' of the sick friend. Then I started thinking about it (I promise I will try to stop thinking as much):

- am I the good sympathetic resident of cancerland; or,
- am I becoming oversensitive to the 'friend of a friend of a friend who was just diagnosed with cancer'; or,
- am I becoming a cynic about all medical crap?

Peeking Into Research

We have medical and scientific research going on around us all the time. We have the freedom of the press people demanding instant access to the research. There are some who are concerned about it in that opposing factions are demanding this access into research so they can come up with ways to block or slow it.

The Union of Concerned Scientists is even concerned about interference into the "deliberate nature of science research". Scientists learn about something new and have to digest and discuss it and research it further without interference to learn its impact.

"These scientists, the group says, are increasingly being harassed by ideological foes who seek to unearth documents that would derail or sully their work with evidence of bias."

My concerns have long been based in the media who seem to insist on hyping tiny developments in research, particularly cancer research, to be the biggest breakthrough since sliced bread. While I appreciate First Amendment rights for freedom of information and I do not think that anything but the truth should be published. I think we need to learn the whole story when the research is completed before being subjected to media hype.

If a clinical trial was based on FOUR people, as I blogged about last year, it is NOT newsworthy. Or if its a preliminary breakthrough which was not the goal of the study, why are you telling us this? And if you are only looking for a reason to derail someone else's work, why don't you wait until they are done (unless you truly have a scientific reason, not a personal agenda) to tell us about it. Research takes time and is not going to be ready for the evening news, until it is complete.

This holds true for all types of research. Time is a requirement of research. And even with the internet and open access an expectation, we need to allow the research to be completed before airing it. This also is the case for clinical trials and FDA approvals. 

Okay, this is a pet peeve of mine.

Please Do Not Make Assumptions

Even if you have walked the walk, please do not make assumptions that what works for you will work for others.

I had one of those around and around and around arguments discussions yesterday with someone (not my husband) yesterday. He kept saying that what he does to make himself feel better will work for everyone else, especially for the person we were talking about. I chose to disagree and we ended up arguing discussing it way too long.

My point was that with rheumatoid you may be able to go do something for a bit and then you need to take a break and rest for a while before doing something else. And sometimes that rest period could be a few hours before you were up to anything else.

His point was that if you were sitting for a few hours, reading or whatever, you need to get up every hour and do some exercises. And you need to go for a walk or two every day and you should never just sit around.

I tried to explain that with lots of pain or different types of pain, rest may need to take priority and getting up and doing exercises every hour may not be a reality. I agree that sitting around all the time is not a good idea but sometimes when the pain is too bad, that may be all you can do.

He would not let go. He insisted he was right because it works for him and that he has pain too (but not rheumatoid) and he is just stubborn as hell. He assumed because he has pain too what works for him works for everyone else with pain. I ended up being very upset and made some excuse to get off the phone.

He assumed the wrong thing. That pain is pain and it is no different for one to another. But it is. I find this so aggravating. Please, if you have learned anything from your own medical issues, do not assume what worked for you will work for everyone else.

I Have A Problem

Since we moved, I have found I am incapable of keeping on top of my medications. I have:

• forgotten to get refills on time
• forgotten where I put my refills
• forgotten to call in refills

I have even forgotten my husband's (only) prescription and had to pay out of pocket because I didn't get the preapproval done.

This is turning into a real problem. I have been having a problem for months with increased pain in my hands and feet. Now my back has been more of a problem as well. It turns out I completely forgot to get my prescription anti-inflammatory refilled. No wonder I have been having more pain.

In our old house, I had a system. I kept all the prescription bottles on the top shelf of the closet closest to my side of our bed. Every week I sit down and refill our pill boxes. I put all the bottles in two rows on the bed, prescriptions in one row and OTC (mostly vitamins) in the other row. Then I fill my husband's pill box with his prescription, move on to the OTC we both take, and close his box and put it aside. Then I go back to my pill box, adding all my prescriptions and then the rest of the OTC items. 

If I empty a bottle or nearly empty a bottle, I put them aside until I am done and then I get a refill or replacement as needed so by the next week we have all the pills we need and we never run out.

At our new house, first we were very disorganized and there is no closet near my side of the bed. I kept all the prescription bottles in big zip lock bags on the floor in the corner. After a few weeks, I found a little book case, which doesn't hold books, to hold all my bottles. I keep everything there. Then one day a week, I put all the pill bottles on the bed, prescriptions in one row and OTC in another. I sit down and fill all the boxes as before. Sounds good? 

Well for some reason, I keep screwing up. I don't know if its because of more RA problems with my hands or that I am not focusing or something, but each week I find as I go through the week, that my pills are messed up. Sometimes I am missing one in a box, or have an extra in another. Or I find that I have missed a pill all week.

This morning I realized that perhaps one reason why my hands haven't been very good is that I have not been taking my prescription anti-inflammatory pills. I don't even have a bottle for them. I checked online and found that I haven't refilled it since late January which makes sense why I am out now. But I have no idea when I last took it. Anyway, I sent in a request for a refill and will pick it up later today. 

However, the real problem is that I need to fix my system so I stop screwing up. I need to do something because I really have to be sure I am taking everything I should. AAARRRGGGHHH!

Fear Of Recurrence

Face it, that's what we are all scared of. Will it come back????? Once you get cancer, you spend the rest of your life wondering at some level 'will it come back?' or 'will they catch it in time?'

The biggest thing about learning to cope with a cancer diagnosis is learning to squish that evil little voice that asks 'will it come back?' when ever you aren't expecting. Sometimes I feel I need a little punching bag or something that I can smash with a baseball bat and beat the crap out of when I feel the need.

[Actually I think all post cancer treatment packs should come with a stress relieving punching bag or something. Complete with a personalized baseball bat or punching bag. Something we could beat the crap out of just to calm our nerves. Does anyone else want one?]

I am serious. That evil voice sometimes is muted or is silent for a while, but we know its not going to last. Learning to control it from taking over your life what we all strive for. I can tell you that while sometimes I have to count back to the dates of diagnoses, but that damn voice never goes away. It lurks in the background. It usually grows in response to how near I am to a medical facility or personnel, especially when any kinds of tests are taking place.

The other little evil voice is the one that says 'what if I get another cancer?' Maybe we need a whack-a-mole game that we can smash to get rid of both.

An ounce of prevention is worth of pound of cure

So the FDA has acted (the ounce). Yes they work slowly but personally I prefer they do that and not rush drugs through the approval process. (Something about deadly

But I digress. Because of that evil man who jacked up the price of a drug because he could and didn't care about the patients, the FDA has moved to see if they can expedite reviews of certain generic drugs (the pound).

"The agency plans to expedite reviews of applications for generic drugs where only one treatment is currently sold."

I like this idea. A lot. Since a generic is essentially the same (but not quite exactly) of existing patented medications, the approval process is much easier than for brand new drugs (or so I believe). The problem is the agency has a backlog of generic medication applications. So now they will see if they can speed some up.

The more generics available, the better. This makes me happy. 

A Cold and Rainy Day For Me To Take Advantage

I am sitting here in a warm sweater with my feet up watching reruns on the DVR while it is cold and rainy outside. The cats went out because they insisted (I said they should stay in but they didn't listen - of course). When the electrician showed up around 845 AM, they came in soaking wet and snow are napping where its warm and dry.

Now that I am not working, I do appreciate having the opportunity to stay home on bad weather days. The whole point of stopping work was to be able to take better care of myself. And cold rainy days are perfect for sitting around with my feet up.

But if you want to think I am that lazy, I am not. I have the second of five loads of laundry in the wash with the first one drying. I have also picked up the house in preparation for the cleaning lady's arrival tomorrow morning.

My health is more important to me than almost anything. (Everyone should keep their health front and center take care of themselves.) Is there anything I could have done to prevent the collapse of my health? No I don't think so (except for my bad knees which I managed to do in through skiing, ice skating, hiking, snow shoeing, and more). These days my goals include not doing anything that might make my heath worse - short or long term. It doesn't seem to take much.

Last summer I went to water the plants in the back yard with the hose. And managed to completely tear my ACL in my left knee - something that won't be fixed short of a knee replacement. Some caution is the word (especially when my husband is looking except when I want him to take over for me).

I do want to get to the library later to pick up and return books. I also want to stop by the paint store to get paint samples to try out. Eventually I will paint more rooms but I am still confirming what colors I want. I want to try painting the samples on the wall and see how they look. (I will paint them on the wall where a picture is hanging and then I will rehang the pictures until I am ready to paint.)

I am taking after their example and will stay inside until I break down and go to the library and paint store. In the meantime I think its time for a cup of tea.

Explaining Cancer Afterwards

Life after cancer can be very different than before it. Forget all that 'new normal' crap, I'm talking about how to tell new people in your life about your cancer history. This includes dating post cancer, just making new friends, and even new employers.

After a cancer diagnosis, you move to 'cancerland' and are basically stuck there for the rest of your life. As life goes on you meet new people as do non-cancer people. But the difference is when, and if, you tell them about your medical history and cancer.

Let's tackle these one by one. First of all when you get a new job after cancer, you should never tell your new employer about your cancer even if you get a new diagnosis. They do not need to know. You are not legally required to tell them. If you have medical appointments, they do not need to know why. You can always say something like 'I have an issue that needs to be dealt with'. And if you need chemo or radiation again which will require frequent absences you can just say you have a medical condition that may require alterations in your schedule for a while.

It is your decision if you want to share your medical issues with your employer and, if you do, it will be held against you at some point. No matter that there are anti-discrimination laws, you will be discriminated against. You will become a 'sick person' in someone's mind and will blatantly or subtly become the subject of discriminatory practices. Miss out on a promotion etc because you may not be able to grow with the position or could miss too much work because of your medical issues. So keep your mouth shut.

New friends? That's different. When you feel comfortable in the relationship you can tell them about your cancer if you want. It depends on how open a person you are. And how you think they might react. Some people (because they are idiots) head for the hills at the word cancer, others will wrap you in a protective blanket and try to baby you, and others may try to drive you crazy with their attempts to make you a healthy person by following their misguided attempts to force you to alter your life to that of a grain, eating raw vegan who runs marathons (or anything you are not - I am not against vegans I am just not a vegan and don't want to, nor do I want to run a marathon). Note: none of these people are your friends. The people who are your friends will treat you the same as they did before they knew about your medical history.

Dating? Same deal. I was first diagnosed with thyroid cancer before my freshman and sophomore years. My father called the dean because I was late coming back after summer break because of my surgery. I told a few friends and it was somewhat a known fact while I was in school but I didn't discuss it much. But I did date and tried to be a normal college student as much as possible and didn't let my cancer distract me from normal college student activities such as parties, football games, bar hopping, cramming for exams, staying up really late, and binge watching old movies on Saturdays with a group of friends.

But later on when I was out in the real world, dating was different. Should I tell that hot new guy or not? Eventually I learned that there was no reason to share my cancer history until the relationship got serious. Basically, if they were close enough to me to see the medications I took daily, realized I took more than the average human being, and asked me why I needed them, that might be a good place to start. 

I had roommates for years that I never told about my medical history because I just didn't consider it their business. Some boyfriends I told, some I didn't. If it was a short term relationship that wasn't going anywhere, why bother? If a relationship was getting serious, it could become shared information. But it really didn't rush to share the information. Maybe I am a fairly private person but I never have found a reason to rush to share the information, unless I was is at a cancer focused organization or something. 

I guess what I am saying is that there is no reason to share your medical history if you don't want to. People don't need to know the specifics unless you want them to. 

If you are diagnosed with cancer, it is your choice to share or not. Society has become more open about cancer than in the 1980s when I was first diagnosed, but it doesn't mean you have to tell anyone you don't want to. (But feel free to tell the cop who pulls you over for speeding on the way to your cancer support group. I had a friend did and got out of a ticket.)

Genetic Testing Is Ahead of Treatment Options

Genetic testing has been researched like mad in recent years. Breast cancer genetic testing is no different than that the rest of genetic testing. But treatment options are not right up there with the testing results.

When this mother found out she had breast cancer she went for a lumpectomy to be followed by radiation and that would be it. But then she went back to her doctor to discuss radiation. More genetic testing had been done and she had inherited an alteration to a gene that is needed to repair DNA. And if radiation breaks DNA so it might be better for her to skip radiation and have a double mastectomy instead.

So she talked to a professor of genetics and medicine who said that information was wrong and she should be able to go ahead as originally planned. Then a group of doctors met and couldn't reach a consensus so they left the decision up to her on what to do.

I am so glad I am not in this woman's shoes. That would be a horrible decision to be forced to make. Which option would be better? Or which might lead her to a quicker death? I could not imagine the emotional stress.

And this shows a real problem that I had thought might be lurking in the background of progress. I have long been nervous iffy edgy unsure about the fast pace of research in some areas and the slower pace of advancements in other areas would be gaps that would leave the patient over a barrel so to speak. Some research takes longer than others to complete for a start and some times it takes longer to get to the starting point.

Perhaps we might need a bit more coordination here to lessen these gaps. But since we can't undo time, here lies the question: if research has lead us to the discovery of this new gene and how it might potentially impact a patient's tolerance of treatment, should the patient even be told about the gene? Since there is no research showing how it might or might not impact the success or risk of radiation treatment, how is a patient supposed to react?

I just think its blatantly unfair for a doctor to tell a patient that you have this gene that might or might not impact your course of treatment and we have no options to give you so you have to figure it out on your own. I would start by getting a new doctor who would provide guidance and reassurance to help make the patient feel confident that she is making a good decision.

Trauma and Ailments

One of my many ailments is fibromyalgia. How fun. NOT! This is from Web MD.

"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals."

Yes, fibromyalgia amplifies pain. It makes life so much fun. I don't get a little twinge, I get ripples of pain across parts of my body.

"Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event."

Could a second cancer diagnosis be considered 'a physical trauma, surgery, infection or significant psychological stress'? Do we remember those studies that associate cancer with PTSD? Yes. So is that how I ended up with it and rheumatoid arthritis? RA does run in my family. But no one else has had fibromyalgia.

"Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression." 

Depression? From cancer twice? Maybe. And add in my other health crap. And the best part is always the last.

"While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help."

So could the trauma of my health disasters pre-2012 have triggered my fibromyalgia? One of those little medical mysteries I need to learn to live with. Along with why I got cancer twice before 50 and why my body then decided to fall apart. I'll work on sucking it up for now because I don't see much choice in the matter.

Would you get a dog?

I am a cat person but after reading this article about dogs who sniff out cancer, I briefly considered getting a dog. I am not a dog person. Its not that I don't like dogs, I do. I think for a pet they are a lot of work. You have to make sure you are home to walk them etc.

However, if my dog could sniff out any cancer in me before it could be found by a scan or test, I would be very happy with a dog. It would save me a lot of stress and anxiety.

Like all other cancer people, I have more concerns about another cancer than the average person. There is only so much kale and greens eating, green tea drinking, alcohol avoiding, and exercising that a person can do. We get examined, tested, lectured, and any other things our doctors tell us we should and shouldn't do often.

But we still have those 'what if' moments in the middle of the night. So if when one of those moments occurred and we had a cancer sniffing dog sleeping next to the bed who was not concerned about any cancer scents coming from us, we would be reassured that there was no need to concern and more easily go back to sleep.

So I will follow this research and consider getting a dog. I'll have to ask our cats about this as well.

Wednesdays Are Killing Me! (Or Having Shrinking Activity Limits...)

Yesterday I had big ambitions. I did go to the gym and the grocery store for both our house and my parents. When I go grocery shopping, I shop for both houses and then deliver my parent's groceries to them and bring them to their kitchen where they put them away. (Some how their tangerines ended up at our house this week - I will return them tomorrow.)

Then I came home took a shower and took advantage of the nice weather to lounge around on the deck while I had lunch. I later attacked the brambles but it was a short battle as my back started to hurt so I switched to knitting in front of the TV.

When my husband came home he said he was going for a walk so I went with him for part of it - 10 minutes-ish. I started cooking dinner which evidently was a mistake because at that point my back hurt so much I was having problems standing. I gave up after dinner and went to bed.

Last Wednesday I had similar problems. I went to my therapist, the gym, the grocery store for both houses, my therapist and came home exhausted. I think that's all I did. I don't remember.

The only similarity with the two days are the grocery and the gym on the same day.

The problem is since we moved I now live 20+ minutes away from the gym which is a mile or so away and my parents live on the way back home from there so I combine the trips. Logical? Yes. Within my abilities? I assumed so but I may be wrong.

Next week I will change my Wednesday. I will only go to the gym and the grocery store. I will not do anything else except reading, knitting, watching TV or any other lazy activity. The only other item on my calendar is the cleaning lady is coming. I will make a point to plan of no other exertion for the day.

Yes this is my life these days. My health is impacting my abilities to do things. I really wanted to go walk on the beach this weekend - this means walking along the shoreline a bit. Sitting down to enjoy the view. I used to go and walk for a good hour or more but can't any more. Then we go get clams for lunch.

My husband pointed out (I hate it when he's right) that I can't go to the beach, make dinner for a friend who is coming to spend the night and hang out with her. It would be too much for me and I would be crabby and to tired to have fun. So that is postponed until next weekend so that I can enjoy myself.

In the meantime, when I look at my calendar and try to schedule things, one item a day is all. One of my doctors just tweaked one of my prescriptions and I hope that will help.

Ambitious

This morning I am feeling ambitious. I have no idea where this came from. But now I am ready to go to the gym. Then the grocery store. Then home to do some gardening. Its supposed to be bear 70 today - which is very rare around here at this time of year.

I also have a goal. Our new house has all sorts of brambles growing near the house. Brambles (or picker bushes or briers or whatever you may call) them are not welcome in our garden. I got one out of the ground yesterday. I have my sights on a few more for today. I figure if I get to a few of them at a time I won't over do things (not me!), I can get on rid of a lot of them. One thing at a time is how it works for me.

Maybe I am just feeling positive for a while. That would be a good thing. Its not that I never feel positive but I am ambitious today. My husband commented that he is used to me being tired, sleepy and grumpy. That tells me I do need to change my ways.

But now before I lose my ambitious, I will go to the gym.

I'm not being a good patient

I try to be a good patient. I really do. I know my health is complicated and the best I can do is be the good patient to help my medical team keep me feeling okay.

What is a good patient? They are the people who actually show up on time for doctor appointments, basically follow doctor instructions, and take their medications.

I have one area where I am falling apart - managing my prescriptions. Since we moved, my little system for remembering to refill prescriptions has fallen apart. Normally what I do is fill our pill boxes once a week. When I go through all our prescription bottles, I pull out any that need to be filled before filling our boxes the following week to make sure we do not run out.And that hasn't been working.

Several times now I do my little weekly routine and pull out the prescriptions need to be filled. Then my system fails. I then seem to ignore the empty bottles waiting to be refilled. I have no idea how I manage to do that each week.

Last week I went to refill my husband's prescription to find out that the preapproval hadn't been done because we forgot to make sure the doctor's office did. He had two switches in doctors recently which may have caused the lapse but that left me standing at the pharmacy and eventually paying full price for his meds.

This week I went to fill my pill boxes with my synthetic thyroid meds and I have none. NONE! I don't even have a refill I can get filled today. I have to call my doctor's office and beg to get my refill in today. I can go without this for one day.... and it does have an impact on how I am feeling.

I forgot another one a few weeks ago as well. I think I need a new system. In the meantime I am not a good patient.

Not sharing your medical news

I had dinner with an old friend last night, as well has her husband, and some of my family. I hadn't seen her in a few years just because both of our lives have taken us in different directions.

In talking, she shared that she had gone through a second breast cancer diagnosis last summer. And she had decided not to tell everyone about it. She told some people but not many more about her diagnosis, decision process, surgery and treatment. Why? Because she didn't want to and she decided there really wasn't a need for it. So she didn't.

I completely agreed with her decision and fully support it. Why? Because its what she was comfortable with. With any medical diagnosis, it is completely the patient's choice on how to handle it. (I mean unless there is an issue of lack of mental capacity.)

Seriously, the absolute worst thing that can happen to a patient if other people decide to share their diagnosis publicly. Imagine that you get a diagnosis and it ends up as the front page of your local newspaper? (This must happen to celebrities with the National Enquirer, and similar publications, all the time.) Or, you go to a theater and have the emcee start with a spotlight on you and the announcement, 'let's welcome Caroline and her newest cancer diagnosis'. That would really suck.

This is where HIPAA laws are important. It doesn't matter if you are the patient's friend or family member, its not your news to share so shut up! HIPAA laws should also apply to friends and family.

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

Another 'Breakthrough'

There is another cancer breakthrough that could lead to 'new treatments'. That would be nice to see. This one claims to have found a cancer mutation weakness that could be identified. And if it could be identified then it could be isolated and targeted. Then it could be stopped or 'cut off' and cancer could potentially be stopped. 

It sounds great on paper. And it might work out in the future. After a few years of research followed by five to seven years of testing. So in a decade this might make a difference to patients.

I am getting tired of this. New medical research is always taking place. But it takes so long to actually make a difference to patients. 

This is actually stressful to the patients who are waiting for treatment and a new medication to save them.

Here's the problem. The media now announces every new medical breakthrough as it is discovered which may or may not actually lead to a new treatment option in a decade or so. With the internet and newer technology the news is spread far and wide. This reaches all the patients and the families who are waiting for the treatments. 

Then as the drug development process starts, patients follow this information. And as drugs go through clinical trials, patients start lobbying the FDA to release drugs early and rush them through clinical trials. Which is not a great idea. 

Think about all those drugs that are recalled by the FDA after additional research finds out that they are harmful. 

But I digress. I hope this 'breakthrough' will lead to new treatments, but I am not holding my breath.

Changing the Affordable Care Act

One of the big claims by all the candidates for president is to reform healthcare. I can understand the desire to change a healthcare plan which is hated by some and loved by others simply because it was the first pass at a national health plan. Obviously it needs some tweaks. Some want to add to it, some want to change it, and some want to replace it. I hope none would remove it.

While I understand the need or desire for change, I really hope that health insurance is not taken away from anyone who already received it under the current plan.If the ACA allowed someone to finally get health insurance, could they really take it away?

Many of us sick unhealthy people previously faced the barrier of not being able to get or keep health insurance after a not so good diagnosis. I hope those days do not return. Seriously could some of the people who most need health insurance have it taken away?

This is a real concern for me. I realize that one of the biggest complaints of the ACA is the mandate that all citizens have health insurance or face a penalty. I can accept that. Some people just don't want a requirement like this in their life, whether it is desire not to have the government intruding in their life or that they do not feel the need for health insurance.. That is their right.

But the people who want health insurance and couldn't afford it, were rejected by their insurance company, or any other reason, should still be able to have health insurance.

Health insurance should not be taken away from anyone who has it and wants to keep it. Also any one who still does not have health insurance and wants it should still have it accessible. I hope the politicians are listening to us unhealthy people.

When all else fails, take a nap

Yesterday, after my therapist appointment, gym, and grocery store, I was so tired I couldn't watch TV. I was probably borderline exhausted. So I was smart. I took a nap.

Actually I didn't just take a nap, a nice little snooze, with my feet up. I slept like a log for over two hours. Then I went back to bed after dinner and slept again for eight hours. So maybe I was tired.

Actually I was so tired, I couldn't focus on much. If you can't watch a Lifetime Movie because you can't focus, you must be tired. In the past my criteria was if you are too sick to focus on the weather channel, you must be really sick. (I learned that lesson while stuck in a hotel with the stomach flu on a business trip.)

It is hard to focus and function like a human being if you are not fed and rested. Those are basic facts. I don't have problems with the food side of the equation (my inner size 8 is protesting) but I clearly have problems keeping up with my rest.

I have to work on my napping skills. The biggest problem that napping causes is not getting enough sleep at night. Your body needs along period sleep to get to that REM stage of restful sleeping. Its bad enough when I wake up in the middle of the night and am not rested the next day. But if I nap too much then I will have problems getting sleep at night.

Today I am tired again but not as bad. I may or may not nap again. It depends how my day goes. But I will make a point not to over exert myself.

My Body Isn't Letting Me Do What I Want

I have big aspirations for our new house. And I'm cheap. I hate, hate, hate, hate the paint colors in our new house.

Brown paint in the master bedroom makes a smaller room look tiny. And there are chips in the walls where the previous owners pulled hooks out. I can't stand it. The same purply brown paint was used in the hall bathroom. Making it look like another cave.

The kitchen is this ugly taupe/tan which continues into the dining room and living room and the upstairs hall and the third bedroom. The second bedroom and the master bathroom are pale green - also known as cucumber by Benjamin Moore. Initially I hated it but its growing on me.

Then the downstairs, where do I begin? The majority of the main area is painted a dark, dark, dark blue. If you rub your fingers or anything else on the paint it leaves a mark. Evidently the previous owners wanted a gaming/theater area to be really dark. They even replaced the drop ceiling tiles with black acoustical tile. And they used blue painters tape to hide the white runners between the drop ceiling tiles. The rest of the room is decent a lighter tan which is nice with the white trim.

My aspirations include repainting the entire inside of the house. I have no thoughts that I can do it in a reasonable period of time. I had thought I could paint a room each week. There is no wallpaper here that needs to be removed. The walls are in pretty good shape. I need to spackle, tape, and wash the walls first.

I started by getting a nice pale peach for the hall bathroom that will also be used in the kitchen. That was Monday. I painted Monday. I did more on Tuesday but I was so exhausted from Monday. But I still need to go back in there. First I need to get a better paint brush. and see my therapist and go grocery shopping. I might not be able to paint today. I think I can paint tomorrow.

I mean I will have time to paint tomorrow. But I don't know if I will be up for more painting tomorrow. And I need to clean up the mess I made in the bathroom and put everything back to the way it was. So I should be able to finish this week. I hope.

Then I need to rest up before I try painting the master bedroom next week. I think that will be one wall at a time instead of the whole room. And a lovely pale blue.

Seriously I didn't think I would be this exhausted from painting. I take breaks all day long. I didn't even expect to finish in one day. But damn I'm tired.

I am not working now. I am, by nature, cheap. I really do not want to pay someone to paint the house. I expect I can do that. My husband works full time and I do not expect him to spend all his time fixing up the house. I want to pull my share too. I expect myself to contribute equally to the household. But my body is letting me down here.

Doctors Paid to Tweet

Twice last year (March and June) I blogged about doctors who provide medical advice in a tweet. Now I found out that doctors are being paid by pharma companies to tweet about specific medications. And doctors who use social media do not disclose that they have been paid to do so.

So now I am even more on the side of medical advice for me will not come for a tweet. Their impact on my life will be the same as an ad for a pharma product - I ignore them and wait until my doctor tells me about it.