Sunday, November 30, 2014

Why should care needed at a second cancer diagnosis need to be debated?

Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any  different than any other cancer diagnosis?

As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.

When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.

Saturday, November 29, 2014

Progress in Breast Cancer Treatment Shows in Recurrence Rates

A new study looked at survival of moderate or advanced breast cancer patients between the 1980s and 2000s. During those two decades new treatments and advancements, greatly decreased the recurrence rates.

I read the attached and two areas were of great interest. During that time Herceptin was made available and Her2 positive cancers became much easier to treat. Also, estrogen driven cancers used to have a consistentlyhigh recurrence rate but now it is much lower.

While the rate changes vary, overall the recurrence rate has fallen by 50% in those twenty years. This makes me wonder what can happen in the next twenty years in terms of cancer treatment progress.

While breast cancer is the most common cancer among women, we must not forget about other cancers and their recurrence rates.

But in the meantime, I will call this progress.

Friday, November 28, 2014

Inflammation and me

A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off  Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.

So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.

Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of  'those' messages.

"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."

Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.

Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.

So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.

Thursday, November 27, 2014

Lung Cancer Doesnt Get Its Fair Share

Lung cancer affects half as many women as breast cancer does each year but kills twice as many women. And its five year survival rate is 16% or for Stage IV, 4%. To put it another way:

"An indiscriminate killer, lung cancer takes more lives annually than breast, prostate, colon and pancreatic cancers combined. The disease has not generally received the public attention or research dollars in proportion to its devastating lethality. Lung cancer receives just $1,442 in federal research funds per death, compared with $26,398 for breast cancer and $13,419 for prostate cancer according to an NIH study. Factor in private donations, and the funding gap becomes even more staggering."

Lung cancer is not the only one that is indiscriminate. All cancers are indiscriminate but its time that other cancers get the notice that go to the headline cancers - breast, pancreatic, and prostate. I call them headline cancers because they grab the headlines. But there are millions of Americans dealing with a lifetime in cancerland which is not the same as life without cancer.

November is lung cancer month. Did you even know that? You couldn't miss the pinkification of October..... Lung cancer, and other non-headline cancers, need their fair share of funding, research, and awareness.


Wednesday, November 26, 2014

I failed the unhealthy quiz!

So in my prowls around the internet, I came across a list/quiz of ten signs you are unhealthy. I thought, that MUST describe me. I was so happy to find out it did not describe me. Which means there are plenty of people who are less healthy than me out there. And here are the ten signs:
  1. Your sleep pattern is not what it should be.
  2. You have become an apple
  3. You suffer from fatigue
  4. Your urine is dark yellow
  5. You snore louder and more often
  6. You have to scratch all the time
  7. You get cracks in your lips at the corners.
  8. The quality of your skin is poor.
  9. You always have a cold or the flu.
  10. Your bowels are not regular.
Now I am not claiming that my sleep is perfect or I never get fatigued because I do. The list claims that one of the key reasons for fatigue are thyroid problems but since I don't have a thyroid that is a moot point for me. I also have RA and fibromyalgia which cause fatigue.

I also may not be the skinniest I have ever been but I don't suffer from the rest of these really at all. I also get plenty of exercise (believe it or not I do 60 minutes of cardio 3 times each week followed by weights and stretching).

But I digress. I am not all that healthy but I failed the unhealthy quiz!

Tuesday, November 25, 2014

Generic drug prices going up

Brand name prescription drug prices are sky rocketing. The silver lining for all of us patients is that generic drugs would become available at a much lower price. But now those prices are going up as well.

In the US, the government does not negotiate drug prices or mandate generic drug prices - which have been priced based on the cost of key ingredients - the smart way to do pricing instead of basing it on how much it is worth for the patients life (which is another blog post).

But now, a Senate panel is looking at generic prices and how much they have gone up in the past year. Hmmm..... I smell a rat.

Let me start by saying that I am a huge fan of generic drugs and most of my affordable prescriptions are generics. But my brand name prescriptions cost me anywhere from $35-$105/month. Ouch. And that's mail order prices. Which means I have to keep my chemo brain/fibro fog focus on refilling prescriptions before I run out.

I also am not a fan of too much government regulation. I do prefer when market forces run prices. While I am jealous of drug pricing overseas, I find it unfortunate that certain industries make their huge profits on the backs of American patients.

Now back to that rat that I smell.I suspect that something more is afoot than just market forces on the generic prices. Maybe some collusion somewhere. I don't know what that rat is but I am suspicious. Call me a concerned patient for now but I will keep digging around on this one.

Monday, November 24, 2014

I find it annoying!

Why, oh why, do we have to have stupid pink ribbons everywhere???? Seriously? I knit and crochet and have tables at craft shows locally in November and December each year. Yesterday I was at a show and there were pink ribbons up in the bathroom. Do we need them? Why?

Every craft show also seems to have someone who decides to plaster pink ribbons on at least half their crafts. I don't think I would mind it if they were equal opportunity ribbons for all the different types of cancer and not just the pink ones.

I don't mind the informative posters you see here and there, its just the stupid pink ribbons that annoy me.

Its not October any more. And I really find them annoying in October. Can't we just get rid of them all? The world doesn't need more pink (ribbons)!

Okay, its Monday morning and I am in a 'mood'. I don't have to work but have to take my father to the doctor today. I want to go to the gym first and a friend may stop by later and the house is a MESS!

And then tomorrow I take my father back to the hospital for another adventure. Meanwhile my husband is threatening to clean while I am gone. The problem with him cleaning is he throws everything he doesn't know what to do with in a bag or box and sticks it in the basement and then I hunt for it for six months as he has forgotten what he put where.

Then the Thanksgiving cooking starts.... which is the fun part.

Maybe I'll be cranky today. Don't tell anyone.

Sunday, November 23, 2014

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:
  1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
  2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
  3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
  4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
  5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.
 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Saturday, November 22, 2014

There is a huge lesson here for all of us

We all have a lesson to learn here. We need to learn to accept our lives for what they are instead of allowing parts of it to cause us stress or depression.

I have now read this article three times. Learning to Live with It: Becoming stress free.

The more I read it, the more it helps me think of my medically disastrous life. I have continuous problems where my health keeps throwing another disaster my way and I have to learn to cope each one. A cancer diagnosis was one - maybe a touch of PTSD with that? But what about an RA diagnosis? Making life more fun each time.

Every change requires adaptation to survive and learn to readapt to the new parts of your life. But we don't need to change the external forces in our life - whether a bad partner, but learn to change our life to cope in its new version.

But the goal of learning to live with, not necessarily to accept it, but to cope, survive and thrive. That has become my goal now. I will keep reading and maybe learn some more about this. Many lessons here.

Friday, November 21, 2014

It all caught up to me

Exhaustion that is. I have been riding this wave of feeling okay most of the time. This happens every so often. Wednesday I felt it a bit. I came in the door at 530 after getting my nails done (a post chemo personal preference - after destroying my nails in chemo, I appreciate them much more now) and felt a wave of exhaustion come over me. We did go out to dinner anyway. I figured I would be okay if I just went to bed after that.

Yesterday I was okay in the morning and made it through work, a couple errands and the grocery store. By the time I got home, I was tired and decided I needed to lie down for an hour before making dinner. An hour later I got up and told my husband it was left overs in the microwave for dinner and back to bed for me.

I was exhausted. I was more than exhausted. I slept all night. The alarm went off and I slept for another hour.

I am still tired but I think I can get through today and probably cook dinner.

This is what happens to me. I function normally and do normal non-energetic things. Then all of a sudden I am completely wiped out. Exhausted.

Tomorrow I hope to sleep late. Maybe even get that crucial 12 hours of sleep. Thank you fibromyalgia and rheumatoid arthritis for doing this to me.

Thursday, November 20, 2014

Vacation breasts?

Or even 24 hour breasts? Really? Yes, seriously. This is the latest in the fad for women. What happened to 'love your body the way you are'? Well thanks to this new doctor in New York, you can get 'instabreasts' which last 24 hours for a paltry $2500. Then in a couple of years you can get vacation breasts - that last 2-3 weeks.


Basically they inject silicone under your breasts and make them appear larger. Why, why, why? What about all the women who have had breast cancer and now just want to look and feel normal again?

There is one voice of reason in the video from a man who points out the idea that why are we messing with nature and having these invasive procedures? And if you had them done repeatedly,  would there be any long term implications?

Wednesday, November 19, 2014

The big scary headline

The latest big scary headline from the pharmaceutical industry says that it will cost $2.5 billion to bring a new drug to market. That's a lot of hype over a little factoid. And this kind of thing pisses me off. Increasing drug prices are an increasing part of medical costs in recent years.

First of all, yes that is a hell of a lot of money. There is no denying that. Second of all, its not as big as it sounds in terms of how they will recoup their money. For example.

If a new drug is developed that will treat a mere 10,000 people each year and costs $5000 per month (not an unexpected amount), it will take the drug companies 4.17 years to recoup their expenses. 10,000x$5,000x12=$600,000,000. $600,000,000x4.17=$2,500,000,000.

And this is why I really have no patience with the drama from the pharmaceutical industry:

"Development costs are one factor companies use in determining how much they will charge for newly approved prescription drugs. But they also weigh demand, the competitive market in their therapeutic areas, and the value they believe a treatment can provide to patients."

So if you thought the so-called 'death panels' were going to put a dollar value on human life, you don't need to worry because the pharma industry already did when they include the 'value they believe a treatment can provide to patients'.

But I do understand the value the pharmaceutical industry brings to medical advancement. I just have a problem with the dollar amounts and drama.

Tuesday, November 18, 2014

Snake oil or good treatment?

Every so often I become a skeptic, well maybe a bit more frequently, but sometimes I am just not sure what I think of new treatment options. And here is an example.

Women with dense breasts run a higher risk of breast cancer being detected later as opposed to sooner as the density makes it more difficult to detect tumors by mammography. So in Australia, there is a new treatment for women with dense breasts. It is an implantable tablet that is placed under the skin and lasts for about four months before they need to go through it again. It has two benefits - reducing breast density and to reduce perimenopausal symptoms. You can see a video on it here and visit their website for more information here.

But its hormones - testosterone and others. Its called T+Ai.... Me I am not a big fan of hormone treatments after what happened to women who were treated with them in the 1980s and 1990s and then found it lead to higher rates of breast cancer. I know testosterone is not a breast cancer hormone per se but I feel it would be messing with my body's balance too much. And if it reduces breast density it is making a permanent change in your body which can't be undone.

It sounds good and could help women be able to detect breast cancer sooner. But is it fear mongering? OMG, you have dense breasts and that means you will get breast cancer and die because it won't be detected early no matter what you do?!!!! Maybe for high risk women with dense breasts but not for huge groups of women.

So my jury, of one, is still out on this one. I am a skeptic.

Monday, November 17, 2014

Over treatment issues again

Electronic medical records do all kinds of helpful things. I remember going from doctor appointment to doctor appointment, lugging a six inch thick file. Now the doctors and nurses carry laptops or tablets and can look up information quicker to see when I last had a blood test or MRI.

Now the data is being mined to find out if Americans are getting their cholesterol blood tests, mammograms, and colonoscopies and all sorts of other helpful tests. But also to see if people are getting their tests too frequently.

And it turns out that some Americans are getting too many colonoscopies. Really? I mean who wants to have a camera 'there' too often? I am personally in the five year club for them. My husband was in the two year club but now is also in the five year club. But the average healthy person needs them every ten years, no more often.

If you are over fifty and never have had a colonoscopy, can I tell you two stories about people I know personally who waited too long? One is now stage IV colon cancer.

There are concerns with too frequent testing unless there is a compelling reason - higher costs and higher risks. Colonoscopies do come with risks as do any invasive peek inside you. And even if you do not pay out of pocket for a colonoscopies, there are costs incurred.

Medical over-treatment is a real problem. Antibiotics are given to treat viruses. This leads to antibiotic resistant germs. Choosing Wisely is an established project to help patients question tests or procedures that might actually be over treatment. Yes an ounce of prevention is worth a pound of cure. But too many ounces of prevention can quickly add up to the pound.

Sunday, November 16, 2014

Its not a tumor....


So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Saturday, November 15, 2014

Bad news doesn't always mean bad news

Puma pharmaceutical's new drug, neratinib, did not perform as well as Herceptin in the latest clinical trials - by the definition of extending disease free survival.

However, bad news doesn't mean bad news when you look at the rest of the story.

"As expected, there was no statistically significant difference in progression-free survival and objective response rate for the paclitaxel plus neratinib arm compared to the paclitaxel plus trastuzumab arm," Auerbach said. "However ... while the development of other HER2-targeted drugs has produced a clinically meaningful benefit to patients with HER2 positive breast cancer, these drugs have had little impact on CNS metastases. As a result, we believe that there remains an unmet clinical need for reducing the incidence of CNS metastases, and the results of the NEfERTT study demonstrate that we may be able to provide this type of improvement with neratinib."

CNS metastases are Clinical Nervous System mets (I had to look that up). Which would really suck. So that means that while it did not extend disease free survival it did open a door to other advancements. So stay tuned, I guess, for the rest of the story. Or maybe this is just called progress.

Friday, November 14, 2014

Personalized cancer care is looking more like a crap shoot


All sorts of research is being done on personalized cancer care. But it looks like a crap shoot to me.

There have been some recent developments:

"This summer, a Mass. General team showed that it was possible to isolate rare tumor cells circulating in the blood and analyze them to understand how a patient’s cancer was changing. Other researchers have been working on developing mouse avatars, in which a patient’s tumor is grown in a lab animal in which new therapies can be tested."

This is pretty cool. But there are still problems. For example, researchers have been taking cancer tissue from patients who's cancer has returned and then bombard it with different therapies to see which ones work. The premise is then that the treatment will work in the patient.

"Researchers must show that the drug predictions that seem so promising in a dish actually work in patients. They also will need to deal with technological issues, such as the time it takes to grow patients’ tumor cells in a dish — between two and six months in the study, and not every attempt was successful."

Not only does the time to grow the tumor cells prolong the wait for treatment - which cancer patients with a recurrence do not have. But then there is no promise that the treatment will work.

So its a crap shoot. The patient has a choice - try the best treatment available now or wait two to six months to see if something better might be chosen from a petri dish? Does anyone have a different suggestion?

Or maybe 'more research is needed' as they always say.

Thursday, November 13, 2014

Cats Help Researchers Develop Treatment for Breast Cancer

A couple of years after my breast cancer diagnosis, a friend called and told me her cat, Abby, had been diagnosed with breast cancer. Abby was fairly young, about 6 (the cat, not the friend) and she felt lumps on her stomach when picking her up. She took her to the vet and was told the not so good diagnosis.

For cats, there is no chemo or radiation. They basically can  have a surgery that can best be thought of as a kitty mastectomy and that's about it. For Abby, even after the surgery, she lasted less than a  year before it became obvious that the cancer had spread and was causing her lots of pain and very difficult decision was made.

That was my first knowledge of feline breast cancer. And then I did some research and found out it is a fairly common killer of female cats.

But now, cats are being used to help find a breast cancer treatment. Cats are more closely related to humans than mice. I don't even know if mice get breast cancer. Usually for clinical trials they are bred to have certain conditions so they are more appropriate for the potential trials.

The cats get an injection before surgery and then again a month later. They are then monitored to see if there is a recurrence - which is usually what kills them now. The hope is they will live longer, healthier lives.

So in my (tiny, non-medical, chemo impaired, fibro fogged) mind, it would make sense to do research for breast cancer on animals that actually get the disease in hopes of curing them as well as humans. I am not in favor of animal testing as a rule but in this case, they are hoping to cure the cats from something for which there is no current cure.

I am a cat lover and am typing this while being supervised by my 20 year old cat. I would hope this would be a treatment for them and us.

Wednesday, November 12, 2014

Putting emotion into our medical decisions

Have you ever gone to the doctor and insisted that you needed a specific test or treatment? You were so wrapped up in the emotions of moment and the ailment that you were not being rational.

You aren't alone. Emotion often leads us to choose unwisely. An example of this is the mammogram decision. Why have one? What if the result is bad? (This is the reason I will never go to a psychic.) Who wants to get bad news. And then the worst, what if the bad result is wrong and its actually nothing. That would be a false positive.

But apparently women do not think about the risk of false positive when they have mammograms.

"American women face conflicting advice about whether to be screened for breast cancer, at what age and how often. The decisions they make are often more strongly influenced by fear or a friend’s experience than by a thorough understanding of the benefits and risks of mammography."

But before we have any test or procedure, we need to be sure we educate ourselves on the possible outcomes and potential problems. In the case of breast cancer, it can be anything from a false positive to over treatment of a cancer. We just need to know first and make a smart decision.

Tuesday, November 11, 2014

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Monday, November 10, 2014

Practice makes perfect

Down under, ovarian cancer research is going to be based on the model for researching breast cancer - many subtypes, etc. Ovarian cancer is much rarer and has much higher fatality rates. The biggest problem with ovarian is it is often not detected until it is later stage. Their is no 'mammogram' for ovarian cancer for screening for high risk women.

"Ovarian Cancer Australia has announced a landmark national action plan, following in the footsteps of breast cancer researchers.

They hope the plan will see the same gains in survival rates and treatment options that similar strategies have made for other cancers.

The plan aims to diversify clinical trials and tailor treatment to specific subgroups of the disease that have only recently been discovered.

"What we know about ovarian cancer now is there are many more subgroups than we previously thought - that's come from understanding the gene wiring of the cancers," researcher Professor Clare Scott said.

An initial investment of $1 million between Ovarian Cancer Australia and the Peter McCallum Cancer Centre has been put towards establishing new clinical trials that target the unique molecular characteristics of each cancer subgroup."

So after practicing cancer research for decades, the advancements are going to be applied to ovarian cancer as well. Its about time.

Sunday, November 9, 2014

Its Not a Contest

Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.

I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly. 

Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.

Saturday, November 8, 2014

Yes you may call me crazy

So what things are bad for my dilapidated body? Standing, lifting, spending long periods of time walking around, etc.

And what have I done? Back in 2007 during chemo, a friend told me I needed a hobby so I relearned how to knit and crochet. Voila, I became addicted and have a giant yarn stash. So I started selling my scarves and such at local craft shows.

I started in 2012 with one show, last year with 5 or so, this year I think I have 8. Or maybe its 9. In addition to knitting, I have started making hair pieces and clips reusing old clip on earrings. (I hope someone likes them besides me.)

What am I thinking? My back hurts this morning already before I am leaving. I will be standing on a hard floor all day, after bending, lifting, and carrying for a couple hours. I am sure I will be in 'perfect' condition by the end of the show.

And then I need to stop by the outlet mall and buy a pair of new sneakers. (Another non-friendly back activity).

Tomorrow, it will be a repeat. Except this show will be 15 minutes from home instead of 45 minutes.

Monday I will do a lot of sitting around and taking pain meds and icing my back.

All of this is self inflicted so you may feel free to call me crazy.

But craft shows allow me to have a creative outlet who's benefits have been researched and noted - knitting can be as beneficial as meditating - and raise a little cash to buy more yarn. And knit more.

Friday, November 7, 2014

Poked and prodded

Yesterday I had a dermatology annual skin check. This is a real conversation:

"How long has this mole been two colored?"

"I have no idea, its on my butt and I can't see it."

We did get a snicker out of that one and she laughed at herself. But the mole is no longer as it has been scraped off. And its a little sore and its on my butt. So this will be a fun day.

I also was a little daring. I had a wart appear on my left arm. My left lymphedema arm. My left lymphedema arm which cannot have needles or pressure or cutting or anything. I thought I was going to be stuck with the damn thing for life.

But the dermatology NP thought that since burning it off wouldn't be a problem because its  surface thing. I thought another second or two and said fine, go for it.

Right now my arm feels fine. I may wear a sleeve for a day or two just in case. I usually do not wear a compression sleeve except when working out or flying.

Then for more fun and games, I am going back to the doctor this morning for another look at my toe to see if I need more antibiotics or not. The first thing they do is squish the part that hurts. Ow.


Thursday, November 6, 2014

Healing and methotrexate

These days a little thing can do me in for a few days or even weeks. I have had a cold that started last week and lingered into this week. I assume its the same one as opposed to a new cold (or the flu or Ebola). But I am slowly getting better.

I was a good girl and did not take my methotrexate last week - it compromises my immune system and I am supposed to skip it if even a tiny bit sick. I went to the doctor on Saturday for an infected toe. Not an ingrown toenail but an infection along the side of my toe. I have been on antibiotics since then. So this week I also skipped my methotrexate. Again.

Per my doctors since I have been on MX for so long, a certain level has built up in my system. But if I keep skipping it, how long until my levels start going down and my RA starts acting up?

For now, a little cold can turn into a lot more. I just wish I could get heal like a normal person.

Wednesday, November 5, 2014

More faces of cancer

There are more faces of cancer. First is the lovely story of this young woman who got married before both her parents died of cancer. They made it to walk her down the aisle before dying. The young woman started taking their pictures as they went through cancer treatmetn together. An amazing series.


Cancer has too many faces. I wish it would go away.

Tuesday, November 4, 2014

Dosage changes

Last year or maybe earlier this year, I have chemobrain and I can't remember exactly when, the oncologists in the US got together for a big event which they called a conference. They did get a lot of work done and came up with some new recommendations for changes in cancer treatments. One of these was to state that it is better for women with a breast cancer diagnosis to be on Tamoxifen, Femara, or the other AIs for ten years instead of five.

Well someone forgot to tell the FDA this so they FDA says five years and the oncologists all say ten years. But the FDA makes the rules so the oncologists have to bring it up to speed. One woman in Michigan has started an awareness effort to this end.

But it does raise an interesting thought. When a drug is initially approved by the FDA, the approval includes dose sizes, length of treatment, etc. Then additional research is done, whether it is on children instead of adults, or for a different ailment, the FDA needs to change its guidelines so an  amended approval is needed. I am sure there is some fancy process for this involving expensive lawyers drawing up paperwork as well as lots of research time but I have no idea what it is.

In this case, the oncologists came up with their new recommendations and now some one has to get the FDA up to speed so we can all be less confused.

Monday, November 3, 2014

A life changing experience

I am not writing this as a fundraising plea but to tell about a life changing experience. We all may need these sometimes.

There are breast cancer retreats, support groups, pink groups, pink girls, and I can go on and on and on. But occasionally one comes along which is a life changing experience for the participants. A good example of that is Casting for Recovery. It teaches women with breast cancer a new skill, provides psychosocial and medical support, and after a three day all expense paid weekend, have a life changing experience. Read this story about a woman in Oregon and her experience on the retreat. 

When I first heard about Casting for Recovery, I thought how cool is that. I'll have to sign up and I did. Then when I was driving to the retreat stuck in Cape traffic on an August Friday afternoon, I thought to myself: 'What am I doing? Going away for the weekend with a bunch of strangers. How did I get myself into this one?' And I came up with a plan. I was going to have gall bladder surgery a month later. I decided if it was awful, I could always fake a gall bladder attack and leave.

By the end of the weekend, I had new friends, reached a new level of acceptance with my medical history, and relearned some childhood fly fishing skills. It was a life changing experience for me.

Sunday, November 2, 2014

Swimming along

With all my physical ailments, numerous well intentioned people have suggested swimming and water aerobics for me. My response is 'um, no'. I don't like swimming. In fact I hate swimming. I hate swimming laps to be specific.

I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)

We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.

At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.

At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.

To this day,  I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.

I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.


Saturday, November 1, 2014

Attitudes are everything

Through the medical roller coaster of a cancer person's life, what is the one thing that gets you through it all? Your attitude.

That's easy to say. Some days, my attitude can seriously be slipping. for some silly reason it can be affected by those minor things like pain and distress levels.

So how am I doing? Middle of the road someplace. Exhaustion yesterday which lead me to stay home from my aunt's 80th birthday party. Annoying not-ingrown-but-still-infected toenail that has me on antibiotics and off methotrexate. And if it does not respond to the antibiotics, they will have to cut it open... Ick. And my back is killing me.

But none of this is cancer so I will stick a cheery smile on my face and suck it up while I dream up some yummy dinner that will preoccupy me this afternoon.