Sunday, June 30, 2013

Its been a long couple of days

Wednesday I had my back procedure. Thursday my back hurt less. Friday I started to feel like crap but got a manicure/pedicure in the afternoon to make me feel normal.

Saturday I started feeling pretty bad and took my temperature which topped out at 101.6 at 2am this morning. I couldn't talk and my husband had to screen my phone calls and tell people to email me instead. I feel like all I have done in the past four days is lie around and take drugs - pain meds, cold meds, and tylenol. I have also eaten chocolate chunk chocolate ice cream for its healing properties.

I woke up this morning and my temperature was 98.8 so I think I have mostly recovered. I am finally beginning to think I might survive. I am not going to work tomorrow so I can continue to recover.

But my back doesn't really hurt much any more.

Personally I think that if you have had cancer you should be exempt from the common cold.

Saturday, June 29, 2013

Back update

After my lovely adventure Wednesday morning where I definitely felt a few pinches, my back is doing better. After I came home, I took a nap to sleep off the anesthesia. I iced my back all afternoon and on Thursday as well as took pain meds. Yesterday I had less of a need of ice and pain meds.

So far this morning, my back feels okay but I have a nasty cold and am spending the day in bed. But my back doesn't hurt.

I was up until 1230 and then up again at 5 so I am a bit tired as well.

I am optimistic that it will feel better for a year or more. I just have to get over my cold to appreciate it more.

My brain is not working well enough to blog more today. I think I need a nap.

Friday, June 28, 2013

The other half of having cancer

I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.

I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.

Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.

My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)

I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.

Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.

When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.

But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.

I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.

Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.

Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.

Thursday, June 27, 2013

What if Chemo came the last resort instead of the first wave of treatment?

That would be awesome. Right now most cancers are automatically treated with chemo, radiation and surgery. But with the development of individualized treatment and molecular medications, chemotherapy may be going the way of the past.

This is a huge advance in cancer treatment and looks like it is not so far fetched. When I first saw this article I was very surprised but glad to see it.

It had never occurred to me that cancer could be treated with out chemotherapy. In my mind I was leaning towards chemo regimens that were not as harsh on the patient than in the past.

So optimism reigns in cancer land these days.

By the way yesterday's procedure went pretty well, some pain as a result but that should go away in a day or two. I'm taking it easy today and back to work tomorrow.

Wednesday, June 26, 2013

Am I supposed to be stressed?

I am really not stressed about my big needle adventure this morning. Am I supposed to be? I am very much looking forward to pain relief. I hate/dislike needles themselves.

But I have been through this procedure three times already so I  know what is expected. I have had probably six or seven other back injections as well. The last time I was there, the nurses all thought they knew me.

Well I will enjoy not being stressed. I am hungry of course but will have to wait to eat - no solid food after midnight.  And I could use some water - no liquids for two hours prior to arrival.

Upon my return, I will take a nap with an ice pack (and a cat who likes to snuggle). If/when I wake up, I might:
  • fold some laundry.
  • convince my husband its his turn to make dinner
  • prepare for a meeting I am having here tomorrow (which means I need to tidy the dining room).
  • And possibly go to the bookstore with my husband.
Of all those, my husband cooking dinner would be nice but tidying the dining room and living room before my meeting is important. I should probably also even look at my notes.

Damn, that meeting could stress me  out if I'm not careful.

Tuesday, June 25, 2013

Its Day 1

I am so excited! I am so looking forward to having needles stuck in my spine - you wouldn't believe!

This is what the procedure will be like. No beverages or food after midnight, clear liquids till two hours before arrival. We arrive at 815 am, check in, change in to the LOVELY gown (ugly so no one steals them), vitals checked, and IV started.

Eventually I will end up in the procedure room where I will lie on my stomach, they will crank up the IV and I will mostly be asleep. They will stick me six times in the spine with some kind of local anesthetic. Then they will stick in six heated needles in the same place (between the vertebrae) that will kill off the nerves (good bye evil nerves). I will wake up and have some local pain - an ice pack usually does nicely.

I will nap for a while to recover from the anesthesia and convince my husband to cook dinner. I may need pain pills and ice but it should be okay. After a day or two the area where they stuck all the needles will stop hurting locally. More importantly by Thursday am my overwhelming back pain should be 80-90% relieved. That is why I am so excited.

I hate needles, IVs, things that might cause a 'pinch' and all sorts of fun procedures. But this is one which will immediately improve my life. One day, one hour, and 11 minutes til we check in. I can't wait.

However this isn't to say, the nerves won't grow back and I'll have to go through this again.

Monday, June 24, 2013

Basic screening tests take on a new meaning after cancer

Most people, by this I mean people who have never had cancer, go to the doctor for check ups and get sent for tests and don't think twice. They get nice negative results sent to them in the mail and they don't think twice about it.

Throw in a few cancer diagnoses, and any screening test takes an ominous turn. Of course any screening test will show that you are doomed. There is  no way you will ever get a clean result again. One test will lead to another which will lead to another which will lead to another and then surgery, chemo, and more and more and more.

Or so the little voices in your head tell you.

It is perfectly acceptable to have little voices in your head after cancer.

Its when they take over all rational thought that you really are screwed. This is why we have psychiatrists, psychologists, and anti-depressants to keep us sane.

However our screening tests still can drive us crazy.

Sunday, June 23, 2013

Doing whats good for you

Yesterday we did something that is good for us. We went to the beach. I am not saying we went and stayed all day but we did go and stay for a few hours. Thanks to my back, I couldn't walk in the loose sand. I also found I could walk in the hard packed sand but only if it was flat.

I went for a nice long walk on the beach, which successfully made my back hurt because the sand was either tilted or bumpy. But it was worth it.

We had very healthy fried clams (gluten free) on our way home but I did have a salad with home made hummus for lunch to counter act it.

It was a very nice day. But today I will go to the gym, run some errands and generally take it easy. I have to work again tomorrow and Tuesday and I worked on Friday. Two days off is not realy enough for me to get enough rest on the weekend unless I really plan it.

Seriously, a two day weekends are hard for me. I try to work my three days together and then have a four day weekend so I can recover. The next few weeks I have two day weekends, work, and then medical procedures sucking up the rest of my time.

But I digress. Off to the gym now....

Saturday, June 22, 2013

Count down day 4

I have been pretty miserable these past few days. My pain meds are my friends. I take them everywhere. I wake up hurting. I hate my back. It might even be making me a touch cranky. Everything I do makes my back hurt.

Therefore I have a plan.

If everything I do makes my back hurt, I might as well skip the things I dislike (laundry, cleaning the kitchen, etc) and do the things I like (going to the beach). I mean if I end up in the same boat either way, I might as well have fun before I end up in pain.

Today we are going to the beach. Low tide is 430 or so. We will go around 1, get there a little before 2, leave around 530 or so and have clams for dinner. Not the healthiest and definitely not on the diet (but dinner last night was a yogurt) but I am pretty limited in what I can do so I might as well enjoy myself.

But only four days to go.

Tomoroow, a/k/a count down day 3, will be errand and laundry day - chance of rain so why not. I might even go to the gym. And take my pain pills.

Monday, a/k/a count down day 2, I will work 8-2 and take my pain pills.

Tuesday, a/k/a count down day 1, I will also work 8-2. I should also get a phone call telling me what time to arrive at the hospital - currently around 830 am. No food or liquids after midnight. But I will still take my pain pills with a sip of water.

Wednesday is THE day. If all goes as scheduled, we will arrive around 830, check in, change into a lovely gown (I was told they are ugly so no one will steal them), and see my old friends - the nurses in the day clinic. (Every time I go there, they all look at me and ask me if I work at the hospital or if they know me from some place else.)

I will get an IV, take a nap due to sedation (best kind of procedure - I can sleep through it), and wake up as the newer and improved less painful back. Well there will be localized pain where all the needles go in but after it should be MUCH better.

So I will suck it up for the next four days. (I'm so good at that - ask my husband....)

Maybe next weekend I will feel better enough to go to the beach again without my bottle of pain meds.

Friday, June 21, 2013

Cancer is cancer





This is a very interesting video on thyroid cancer and the stigma of having it.

Here's the premise: You are told you have thyroid cancer, you are told its the 'good' cancer and you will be fine. Then it turns nasty, and you feel like you were mislead and go through the whole cancer roller coaster. And you are being treated by an endocrinologist who may not have all the psycho-social support services available in the oncology department. Its the crazy cancer roller coaster.

Let's take it another step.

You are diagnosed with any type of cancer, early stage, and your doctors think you will be okay. You are on the cancer roller coaster but doing fine because treatment wasn't too bad, you did okay and you are doing fine. Then whammo out of the blue, your easy cancer became a not so good cancer and you are not doing well. The crazy cancer roller coaster is hitting you but much worse.

Society is training us that breast cancer, thyroid cancer or whatever are cancers that you get, are treated and move on. But cancer is cancer and that should never be the case. Society is wrong in this case.

Thursday, June 20, 2013

I hate heartburn

I really, really, really hate heartburn. I am at the point where I could even say I really, really, really, really, really, really, really, really hate heart burn. I get heart burn all the time.

I take Prilosec (or the cheaper version from Costco) daily. I take tums as needed. I watch what I eat.

I have a  hiatal hernia which is on the border between being big and small. It is 3cm and small is considered <3cm and="" is="" large="">3cm, so I guess its middle sized. It helps contribute to heart burn.

I am also on meloxicam for my back which is an anti inflammatory and has a tendency to irritate stomachs. But if I don't take it, I get more aches and pains.

I am on Methotrexate which can (and seems to) cause stomach irritation.

I get heart burn driving in my car on the way home from work. I get heart burn sitting in bed blogging (like I am doing right now) for absolutely no reason.

I have had an endoscopy (which was pretty damn nasty) to show that I have the hiatal hernia and some erosion but not much.

The newest instructions from my physical are to add Zantac (not Xanax which is something completely different) to my daily selection of pills and see if that helps. After two days, I don't feel any better so maybe I am just impatient. Who wouldn't be impatient with heartburn?

I just hate heartburn.

Wednesday, June 19, 2013

Blah, blah, blah - with your medical history we have to be sure

Yesterday I had my annual physical. Or Woman Wellness Exam or whatever the correct term is for it these days.

It did start off interestingly while I was waiting to check in at the desk, there was a woman who was being told she can't call the doctor's office every day making demands, should go back to her psychiatrist, and perhaps become an inpatient at a psychiatric facility. We'll just say that I was very happy that was not me. My health/mental stability is not that bad.

My primary care, who I like, just had a baby and is out for the summer on maternity leave so I met with her nurse practitioner who was one I had not met before. She was very nice and very thorough in her questioning after she let me go through my list of questions. We talked about my ganglion cyst which makes my wrist hurt, we talked about my arthritis, we talked about back pain, car accident, back procedures, previous surgeries, my general health, how much I exercise, and more. Then she examined me and thought I was pretty normal (wow!).

I left with two to-do items - one is a cholesterol blood test which can be done the next time I have blood work done - every two months for rheumatoid, every six months for thyroid - so whenever the next one rolls around.

The other is a much bigger test (where I might feel a 'little pinch') that she wants done in the next two weeks. I can understand wanting the test but I didn't realize she considered it to be more urgent. That part I don't like. I'm not looking forward to the test itself but really dislike it when I have tests which must be done right away.

Grrr.... All the little 'what if' voices in your head start to kick in when I have 'urgent' tests.

It is scheduled for July 5 - which is fine because we had no plans to go away for the weekend - which is 2 1/2 weeks. I have no idea why it is so urgent. But of course I get to stress about it. I will take my avoidance mode until then and discuss it in more detail when I feel like it.

Tuesday, June 18, 2013

Recovering credibility

Earlier this year Komen announced that they have basically cut in half the number of three day walks they will offer in 2014 - essentially saying they are not doing as well as an organization.

Yesterday they announced they have a new CEO, Dr. Judith A. Salerno, who has a background in medicine as well as in running non profits. I am not sure what Nancy Brinker's background was other than promising her sister to paint the world pink and earn lots of money from donors. Ms Brinker will still be around as Founder and Chair of Global Strategy.

I think the biggest problem Dr Salerno faces is regaining the credibility of the organization by the general public. I know many who have stopped donating to Komen based on the Planned Parenthood flap and the revelation that very little of their money goes to research and the rest goes to awareness, events, and screening and other programs. I no longer volunteer for them - I did for a couple of years and stopped well before the big hoohah last year.

She faces a huge job, one that I don't envy.

Monday, June 17, 2013

Count Down - Day 9

I am day 9 of my count until the day of nasty needles. I can't wait. that tells you how much pain I have been in if I can't wait to be sedated and stuck with  numerous needles into my spine.

I am on am opiate pain patch that provides 10 mcg/hr of pain meds. That works wonders but its not enough these days. I also have another prescription pain pill which I can take up to two every six hours with  no more than 8 tablets in a 24 hour period.

I used to take one every 6-8 hours. Now I take one every six hours. Yesterday afternoon I took a second one two hours after the first one because it wasn't making a dent even though I also had an ice pack. Two pills have a tendency to make me stupid(er), something I try to avoid at all costs so I rarely, if ever take a second one.

I just could not get comfortable and wasn't able to stand for more than a couple of minutes. I started cooking dinner in two minute intervals - go to the kitchen and rinse the spinach and leave. Then back to the kitchen to put out spices and make marinade for salmon (garlic, mustard, maple syrup) and leave.

Then I got brilliant and set everything up and delegated to my husband that he could empty the dishwasher and cook dinner because it wasn't happening for me. It was very difficult to get comfortable last night so I could sleep as well.

This week I am taking it easy. Exercise every other day at most. I will work for six hours today (if I can) and then come home and put my feet up and do whatever it takes to get comfortable. Which may be a fat lot of nothing but whatever it takes I will do it.

Sunday, June 16, 2013

Unplugging

It is the easiest way to fill in free time these days. Go online, watch TV, read your ereader, text/call on your smart phone. I know I do it.

I come home from work and am exhausted so I sit down on the couch, turn on the DVR and watch one of my many recorded shows, sometimes I even play games on my ereader at the same time or text on my phone. Three pieces of technology at one time.

I go to the gym to destress and exercise and either bring my mp3 player or my ereader and watch TV while listening to music or read during commercials. I grab my ereader for waiting in doctors office where I used to bring a book. My husband one time laughed at my in the car as I juggled my cell phone, GPS, and ereader all at once on my lap.

In the morning we automatically turn on the television to get caught up on the news and I boot up my laptop to catch up on blogging, email, facebok, twitter, and anything else that crosses my mind.

How much technology is too much? That's too much.

I want to step away from technology. I spend too much time on the computer, ereader, DVR, phone, GPS, and TV.

I am working on changing my ways. I am back to reading more books in book format. I actually went to the library this week and took out four books. I have read most of one already (and then I got an email that books I was waiting for are now available so I downloaded three more on my ereader.)


So, I pull out my knitting and sit and enjoy it without the TV on the in the background. I read books with no noise going on. I 'forget' to bring my cell phone places. I leave technology behind. And I find I like it that way. I will do more of it.

Saturday, June 15, 2013

Breast cancer over hype

"...breast cancer has become the most heavily promoted disease in this country, women walk in with information, misinformation, strongly held beliefs, opinions, and frequently a literal army of supporters."

 I completely agree with this statement which came from this article which I found to have brought up many thought provoking points. There is no other ailment which has an army of patients, painting the world pink, with the best of intentions, and share good and bad information.

The author, an oncologist with 30 years of practice, concludes with:

"The point is that breast cancer patients are a particular entity, heavily influenced by the media, social networks, and well-meaning friends. They envision themselves as patients, victims, warriors, survivors, experts, activists, victors, and people who just hit a bump in the road and kept moving forward. Pay attention to which one is sitting in front of you."

As you know I have numerous ailments. They all have message boards, support groups, web pages full of information, and all sorts of resources.

None of my other ailments have:
- As many 'warriors'
- Awareness messages on Facebook which want you to post your bra color
- Color coded events
- Arguments over treatment among friends
- As much 'advice' from know it alls who never had the disease.

I meet people all the time with breast and other cancers as well as all sorts of fun ailments. A breast cancer diagnosis turns on the media and the pinkification and takes off. All other ailments seem to have a different effect on the patient. Media influence is a huge part of it.

My advice is pay attention to your doctor's advice.

Friday, June 14, 2013

Victory in the Supreme Court

I have always wondered how Myriad Genetics was able to patent the two BRCA genes. I always thought it was a little funny because they are essentially a body part. Now the Supreme Court has agreed (9-0) that genes cannot be patented as they are naturally occurring.

Its about time.

Patents are awarded for inventions and new ways of making things. So I never understood how Myriad Genetics could own the genes. They had the market cornered on the BRCA tests and charging $3300 for the test. Even though most insurance companies pay for it, this overcharge is just another way that insurance costs are paying for vastly inflated prices.

This will also impact the biotech industry as they develop new gene sequencing techniques and it should open up genomics as researchers don't have to worry about infringing on another's patented gene.

This has been a long awaited decision that received very little press. It did make the front page of the newspaper in biotech happy Boston but I couldn't find it on CNN.

I call this progress and can actually agree with the Supreme Court on this decision.

Thursday, June 13, 2013

Warning - I have been thinking!

I'm sorry I don't mean to do that, think that is, very often. It often gets me into trouble in one way or another.

I wrote a post the other day about how time flies and how I am coping better these days - or so it seems. Being sensitive and thoughtful (hah!) I decided it was time for some inner-contemplation on my developing coping skills.

First, am I any healthier than I was six years ago? Absolutely not. I have so many new ailments that are the chronic kind that follow me around wherever I go, I think I have lost count. I definitely have many more doctors and doctor appointments (these seem to go hand in hand) than six years ago.

I have many more surgical scars. I have the kind of scars where they went back in a second time to make sure the scar is going to stick around a long time. I have had the kind of surgery which left not one but four scars. I am going to start playing connect the dots with my scars and see what I can draw...

Back to coping, I have come up with a couple little reasons and a couple bigger reasons.

On the little reasons, I see a monthly therapist. I didn't start therapy until I was going through radiation. I did go to support groups but therapy might have helped me sooner.

I also believe in 'better living through chemistry' where I take an antidepressant daily because as my therapist puts it "I am in constant mourning for my health". This might not be a problem if my doctors stopped finding new ailments.Maybe if I stopped going to see my doctors they would stop finding new ailments.... No bad idea.

Bigger reasons why I think I am doing better. First of all for over the past two years, I have been going to the gym regularly. I used to belong to a gym where I would walk on the treadmill and look at all the other equipment and never know how to use it and I went for daily walks. I broke down a couple of years ago and joined the expensive gym for dilapidated people where they have worked with me.

Now even though my health has clearly gone down hill, I am physically in better shape with muscles and things like that. I have retained a fair amount of flexibility and have a good sense of balance so I feel less clumsy. All this makes me feel 'healthy'. I can pick things up without straining. I don't feel like I am going to trip over myself.

Finally, I think my coping skills have improved. I don't let myself get all worked up over the little things any more. Life is too short to let the little things bug me. I save that for stupid customer service people or bad drivers on the highway. Most of the rest of it, I have learned to let it run off my back. I mean I have heard more medical ailments, there are not that many new ones left that might scare me at this point.

Just or the hell of it last week I decided to see if anyone would offer me life insurance at this point. The answer I have found is not for 'any reasonable amount of money'. So maybe I am seeing the humor in things as well. That is coping too. And thinking...

Wednesday, June 12, 2013

Rheumatoid treatment options

When I was diagnosed with rheumatoid last fall, I was already fairly aware of treatment options as my mother has had RA since 1989. The current theory for treatment is to hit it fast and early to slow progression and joint deformities.

I was immediately put on plaquenile and prednisone. Plaquenile is an old drug from the 1930s or so and has successfully been proven to treat RA but it is slow working - months to have an effect - so usually prednisone is given for a brief period of time to get the swelling and  pain down faster. That was bad news for me because I turned out to be allergic to both.

I was then put on methotrexate orally and after three months, was upped to the maximum oral dose but still not much progress against RA. Then after another three months, I was switched to injectable methotrexate which is not my favorite thing. This seems to be causing a few problems in reacting to the injection and I have been concerned about my options.

I go to my new rheumatologist in July to talk options. I have limited options because all those lovely new biologic drugs like Enbrel and Humira that are advertised on TV are not for me because they don't like giving them to people who have had cancer. (There's a choice - living in pain or cancer.) There is one new option that has only been out for a short time that might be a possibility but it is very expensive.

So while I have been over thinking this whole thing and spending all too much time consulting with the evil Dr. Google I just learned about a new study that says that the older drugs - methotrexate, plaquenile and another drug that I have not been put on are proving just as effective as the new and expensive ones that I can't take. And they cost a lot left. The article also notes that between 20-40% of patients do not react to methotrexate. So maybe I am not alone.

Now I am going to stop over thinking this, step away from Dr. Google and wait until I see my rheumatologist next month.

Tuesday, June 11, 2013

Time passes by

I used to keep a running list of things I wanted to ask my doctors at upcoming appointments. For instance if a doctor said 'we need to keep an eye on that' I would write it down and then next time I went to see them, I would ask about that.

Next week I think I have my annual physical. I am scrambling to put together my list of questions. I started it last night, lost the piece of paper (already) and thought up a bunch more things to ask about. And will now have to start another list on another piece of paper (that I can potentially lose as well). I may be up to a notebook by the time my appointment rolls around sometime next week.

I don't even know when my appointment is. It is sometime soon. If I could find my phone (probably with my list) I could look it up.

This is a complete turnabout from my stress level of say five years ago.... which leads me to realize that my blog is now six years old and that means I am six years from my breast cancer diagnosis. This is blog post 2152 to be exact. How the hell did that happen?

A lot has happened in that time period. A few hundred doctor appointments, five surgeries, a billion or two procedures, blood tests, and things that might make me 'feel a pinch' later I am still alive and kicking. Sort of, right now my back hurts so much I can barely breathe and I'm waiting for a pain pill to kick in so I can go to work.

I still have at least ten doctor appointments scheduled for the coming three months - that's been the standard for the past six years. (The hospital appointment lists show a maximum of ten appointments so I never know how many more than that I have upcoming.) I still have way too many doctors I see on a regular basis. Now I just have to figure out what I am going to talk to them about when I see them. I have to make a list or ten.

Monday, June 10, 2013

Count down

I am on day 16 of my countdown until my next back procedure where they will sedate me and stick nasty needles in my back and kill off the evil nerves which cause such pain. My back has gotten worse and worse over recent weeks causing me to decline fun events.

I am managing my resources so I can get through my work week. Last week I called in sick and to make up for it, I am working four days this week - which will be a stretch for me. It is my goal but I might not make it.

This weekend I had to decline offers for fun events and stay home to rest my back. Not fun but I did get some gardening in. Only 16 days to go.

Sunday, June 9, 2013

Whoops!

I forgot to blog today! I slept late. Is that a good excuse?

Saturday, June 8, 2013

What I have been doing with my time

With a little help from Mother Nature.
Lilacs

Triple Peonies - scented as well

Rhododendron

 Azalea
 Dogwood
Iris
Two types of peonies and roses - all scented.

Friday, June 7, 2013

A taste of my new life

Yesterday I had a fairly enjoyable day. Well not perfect but pretty darn good. Wednesday night was methotrexate injection night, where I keep my eyes closed and my husband injects me. We used to do this on Wednesday mornings but have found that I feel nauseous and pretty awful for a few hours so we decided let's switch it to evenings so I won't be trying to work through it.

So much for that idea as I spent the evening nauseous and woke up at 1130 at night running to the bathroom. I didn't throw up but I felt like I would. Then I slept off and on for the rest of the night. In the morning I was a wreck so I actually called in sick and spent the morning at home. I spent most of the morning feeling nauseous so I passed the time knitting on the living room couch (supported by the cat) with periodic forays out to the garden to do a little weeding. I had a banana and toast for breakfast so as not to tempt fate. Eventually I ate a some lunch and felt better.

My afternoon ended with a dentist appointment which was immediately counterbalanced by a mani/pedicure. So to counteract the news that I need some periodontal work, I have fuschia toe nails.

But I digress. I feel rested and got plenty of sleep last night. That is a taste of my new life I can get used to.

Thursday, June 6, 2013

What to eat

I am confused. In an age where the latest trend is to eat healthier food, buy local, and all that, I really do try.

My first motivator is the Mediterranean diet because it is supposed to be healthy and because I like the food. This means eating plant based food like grains, fruits and vegetables, less butter and more olive oil, less red meat and more fish and poultry. I can do this. Except my husband likes steak so when we eat red meat, I have gotten us smaller portions. This works pretty well for us.

Then there is the fibromyalgia diet which is lots of plant based food and lean protein which sounds pretty similar so that should work as well.

But then there is the arthritis diet which says lots of beans particularly ones with antioxidants like red beans, small red kidney beans, and pinto beans as well as black  beans and garbanzos. It also says to avoid the nightshade family to reduce inflammation. Night shade vegetables are tomatoes, eggplant, red bell peppers and potatoes. Some studies have shown them to contribute to increased pain in arthritis patients but this is not yet confirmed.

What is very common in the Mediterranean diet? Tomatoes, egg plant, red bell peppers and potatoes. This clearly leads to a conflict.

Also, there is the breast cancer - soy link. I hate tofu so I opt to skip it. I also avoid soy supplemented food and edamame because every time I turn around, the proverbial them change their mind if it is okay for breast cancer people to eat or not.

So if I take all this advice and summarize it. More chicken and fish, more beans and hummus. Less red peppers, tomatoes, eggplant, and potatoes which could lead to a boring Mediterranean diet. Skip the tofu as well.

Wednesday, June 5, 2013

We knew this would happen

Not to make light of an other's misfortunes but I think that we knew this would happen. Komen (for the Cure) has clearly been on a downturn since the mishandling of the Planned Parenthood epic in 2012. One of their main fundraising efforts has been their three day walks. There used to be 14 around the country. Starting in 2014, there will be 7.

The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.

And example of their recent numbers is here:

"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.

About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."

What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.

If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.

Tuesday, June 4, 2013

Balancing

As I now am happily employed at one job instead of two and have cut back at some volunteer efforts, I feel I am achieving some kind of work/life/health balance where I might be able to get enough rest as well as cash flow and not feel as if I'm running from one thing to another all day long.

My other job is almost at its end. I do need to tie up some last loose ends but that's it. I think they think I am leaving to work full time at another job but I'm not. Its because I have to cut back. This is very frustrating to me. But now its over.

I will miss parts of that job but life is all about balance. And my health is taking more of its share in this work/life/health balance than previously. I work my three day work weeks and then feel exhausted and need more rest.

I hope that my RA will get under control and I get more energy back. That would be nice. I go back to that doctor in about a month or so and will see how I am doing then. But for now I will have some sort of work/life/health balance (even if not mentally balanced).

Monday, June 3, 2013

I am way behind

Yesterday was National Cancer Survivors Day. How did I miss it? I should get to celebrate twice or something. But I wish it didn't have the S word in the title. How about National People Living With Cancer Day?

Also, this weekend was the ASCO conference. I usually read what is announced each day and now have to catch up.

Here are a few details so far:
There is lots more to read about and I'm sure there will be some big announcements. I have gotten through a few of the sessions so far. The two sources to read are:
So I will start reading them myself and see what I think about them. I am sure there will be many exciting new topics discussed.

Sunday, June 2, 2013

Thyroid cancer facts

The Huffington Post brings us Thyroid  Cancer: The Five Things You Really Need to Know. One little factoid jumps out: UP 274 percent since 1997. That would make it the fastest growing cancer in the country. But it affects a relatively insignificant number of people - around 60,000 this year - so it doesn't get a lot of attention.

Number one to know is it is not the good cancer. There is no good cancer. The term is derogatory and misleading.


Number two is that taking a pill every day is not that easy. You need to replace the vital thyroid hormone but if they give you too much you will be hyper and if they give you too little you will be hypo - too much or too little does not do the body good. And the doctors try to keep your levels low to prevent that lovely possibility of recurrence.

Number three is there is no new normal. I hate that term. After both cancers I was supposed to reach a new normal. If I was nineteen at my first normal and now I am on my third normal. What is normal for me?

Number four is that oh so subtle scar across the front of your neck. It fades with time but it never goes away. Stop staring!

Finally, you are not alone with thyroid cancer, you just have to look a little further to find support because it is still rare. I can count on my fingers the number of people I know with thyroid cancer. This includes the pharmacist at the local Walgreens, Ria the painter, Yumi from Japan, Lesley in Texas, the other woman I cant remember her name who also had both breast and thyroid cancer, and a few others online. (I know I am forgetting someone but after cancer twice the brain is the first to go.) But I probably know hundreds of women with breast cancer - literally.

So if you know someone with thyroid cancer send them to thyca.org or bitemecancer.org.

Saturday, June 1, 2013

Some clarification here

I got some feedback yesterday that my blog about the patient who didn't get a needed scan in time now has weeks to live. I said the patient needed to do more and be proactive in their health care. Some one said that we can't blame the patient because we depend on our doctors.

What I see of the issues are the following:

The woman complained of severe headaches and pain down her arm. Her doctor told her it was arthritis and treated it as such. She also complained several other times to nurses and was told she didn't need scans. If the diagnosis didn't resolve the problem, more testing should have been done to get to the root of the problem. This is where the patient could have stepped up.

Also it sounded like she was dealing with nurses often - did they know the extent of her medical history?

And if this doctor wasn't doing anything to help her, she could have gone to another doctor which it did not sound like she did. I mean she did say she had bowel surgery which meant she was going to a  gastrointestinal doctor, who wouldn't have been as concerned about something not relating to digestion. What about a neurologist or some one like that?

I don't know all the details here because I am not that patient but it would seem to me in the modern medical world that this patient slipped through the cracks and her complaints were ignored. This is where the patient should have spoken up more.

Yes we depend on our doctors to tell us what is wrong with us and treat us. We depend on them and rely on them. Some times we put our head down and just slog on through things. But need to stick our head up occasionally and see if we are happy with how we are feeling or is ti time to take another tack.