Snake Oil and other cures

It came up that some people thought I was against hearing about any alternative treatments for cancer. This is not even remotely true. I am more than willing to hear about them. Chances are, I have already heard about them AND done my own independent research on them.

Last year there was a series that came out called The Truth About Cancer. It's release was very timely, I was in the hospital with a fever and respiratory infection. I was bored out of my mind and had nothing to do. So I watched it, every episode, some more than once. In it, I found some words of wisdom and some good options to explore. I found some common knowledge. Unfortunately, I also found lies, propaganda, blatant mistakes and unproven methods being touted as 100% successful options and there were some things being promoted that I would outright call 'snake-oil' solutions.

Happily I am not a "throw out the baby with the bathwater" type of person and I took the time to research those things that were applicable to me. I am also not a "believe all and drink the kool-aid" person so I also researched some of the broader reaching claims. I was also locked in an isolated hospital room, bored out my mind.

So yes, I am open to exploring other options. I already do/have tried some. However, I'm not locked in a hospital room right now. So I don't have hours and hours to fact check each claim. This means that if you present something to me as an option: DO THE RESEARCH FIRST!

When I say do the research, I don't mean check out only the information and links that are provided by those promoting it. Don't tell me that you heard of someone who heard of someone who tried something and was cured. Find independent support for the claims. Independent support is not some other website that offers affiliate links with claims that it works. The best independent support is a double blind study of significant size where people with like qualities were randomized into 2 groups and one given the 'cure' and the others not. That is the best independent support.

Can't be bothered to do that much work? Then let me give you a couple more guidelines if you want me to take the time to do that level of work.  If the answer is no to any of these, then thank you, but  no thank you.

Was any successful testing done on hormone negative breast cancers?

• not all cancers are the same
• not all breast cancers are the same

Are the only reports from those who either charge for the 'cure' or have a personal story with an affiliate link to the 'cure'?

• find anything unbiased that does not profit it, otherwise it is highly suspicious

If you heard of a friend who was cured, first make sure it is your friend, not a friend of a friend or a neighbor and then are they willing to talk to me personally?

• "A friend cured her cancer with cannabis oil" - oh great, so what kind of cancer, what combination of CBD/THC, what dose, how often, how long, how was the cancer diagnosed, how was the cure diagnosed? Without this information, I can't go forward. FYI, I have done a fair bit of research on this as an option and have tried it, without success. I will continue to use products with CBD and THC for managing symptoms. Meanwhile, there are many medical studies on right now, double blind testing on cannabis oils. It is being investigated because it has show to help SOME people. 

This is a good starting point.

If you want to watch the series the weekend of the 25th, please do, and use my link to register. In transparency, the above link is an affiliate one (anyone who registers gets one) and if 25 or more of my friends register, I get a $25 visa card.

If you do watch it, and want to discuss it, I'm up for that. But before you ask me "have you tried" based on what you saw in it, please, please, please research it yourself, not only from the places the series tells you to go, and not only positive results. Dead people can't write posts about how they tried it and failed, but look for families who posted less than successful stories also. Balance them out. Question all. Then if something seems amazing, please let me know (along with what research you've done to support it so I don't duplicate it).

One thing you may want to suggest that I have already squashed after much research:

• laetrile/B17/amygdalin -  there is only an anecdotal support for this, and fantastic unproven stories of success by sites that make money from it's promotion. There have been scientific studies that showed it was not effective. If it had been effective "big pharma" would have marketed it already. Because it is a cyanide, incorrect dose can also cause death.   

Things I already do:

• Meditate
• Exercise (I am going to add rebounding because it seems a fun form of exercise) 
• Green and a couple other recommended teas
• Group therapy
• Positive self talk
• turmeric supplements

Things I am researching:

• diet changes (angiogensis has the most studies with promise, although more towards preventing and less successful in treating)   

Sorry for the long post. I may still snap if someone posts an "They have a cure for cancer but are hiding it" meme. I may seem like I ignore or don't want your miracle cure. I would love a cure. Just please, make sure it's real before suggesting it.

Breast Cancer Awareness Month - Day 5

Here are some of my recommended books for kids with a mom with breast cancer. There are more, but these are those we've read that helped, at least a bit.

The Invisible String

Let My Colors Out

Mom Has Cancer

The Goodbye Cancer Garden

Our Mom Has Cancer

None of these books has given my kids (or me) a strong piece of mind, but they have opened conversations. I hope you never need them, but if you do, you now have some awareness of their existence.

Stop funding Breast Cancer Awareness, Prevention and Early Stage treatment!

Ha, I bet that got your attention No it was not a typo nor a way to fool you. I really do believe that.

Okay, who really is not aware that breast cancer exists? Awareness requires no funding, no pink ribbons, nothing. 1 in 8 women will be diagnosed with breast cancer. Those women are friends, mothers, daughters, sisters, wives; trust us, we are all aware. The one awareness I would happily fund is that women are not the only ones who get breast cancer. That is right. Not sure you all knew that, but men get breast cancer too. Now you are aware; tell two friends you know about this and they will be aware and tell two friends and "so on and so on".

As for funding early stages and prevention, while they are important I will ask you why is it SO important? Why is it so scary for someone to be told "You have breast cancer"? It's scary because of those told, 1/4 will become (or already are) metastatic, aka stage 4. And stage 4 is terminal, do not pass go, do not collect $200, it will kill you. And the stats on how fast it will kill you are beyond scary. From time of diagnosis until death, the average person with "mets" has 18-24 months to live. That is why a breast cancer diagnosis is so scary, even in an early stage, It's the possibility of stage 4 that scares people.  Yes chemo and radiation are scary, but death is more scary.

So I have a proposition. Turn stage 4 breast cancer into a treatable condition that does not shorten life to under 2 years. Seriously. Make stage 4 cancer a chronic condition, drugs for life, even with side effects FIRST. Take away the death sentence as a priority Remove it as an option from the table.

Then and only then take one step back, and start to work on stopping early cancer from becoming stage 4. When that is done, work on preventing cancer.

But wait, you say. If they can truly prevent cancer, isn't that a better choice than working on stage 4? NO! NO! NO! Doing that is telling anyone who already has stage 4 cancer, who had cancer at any stage at any point in their life that could come back that they don't matter. And come on, this aspect has been worked on for many decades with no success. Stop making breast cancer a possible death sentence first then go backwards. Seriously. Tell the 113 USA women who die every single day that they matter.

Oh no, you say, "big pharma would never go for that". Um, if they were smart they would By focusing on treatment and prevention, so called big pharma is killing their own business.

Lets do the math and lets make it simple.
Lets say a 100 people develop an early stage breast cancer each year (very low but an easy number to work with). Lets also say treatment (probably chemo) costs 100 units a month. In an early stage cancer this is 6 months and then nothing. So we are at 100 people * 100 units * 6 months or 6,000. At this point, about 75% will remain cancer free for life. The other 25% will have a re-occurrence, not all will be stage 4 but let's go right there. Those 25 people will have 18 months of treatment (and then die) for a total of 2,500. Making the total money that "big pharma" will get from the original 100 diagnosed is 8,500.

Now do that math if stage 4 is a 'normal' lifespan but includes treatment, even keeping the current survival rate at 75%. We have the original 6k from that first treatment. But, then we have 20-50 years (or more) of lifetime treatment for those who became stage 4. Lets split hairs and go with 35 years. Now you have 100 per month at 12 months times 35 years or 42,000. Add that to the original 6k and you get 48,000.

Did you see that, if big pharma could effectively treat stage 4 they could get 41,000 extra for every 100 newly diagnosed patients. Maybe remind them of the profit potential. Pharmacological companies are for profit. They are. They will not change. Show them the real profit in effectively treating stage 4.

Scientist on the other hand, are all about the science, the discovery. There is not a scientist out there, studying cancer (or anything else) who does not want the fame that would come with a breakthrough discovery. Let them know they could also get the fame from stopping the death sentence, from finding long term, lifetime treatment as from a cure.

Stop the deaths. Stop the fear. Put the money where it will help the most.

2015 Was the Best Year Yet

No seriously. Yes, yes, I have spent half the year fighting my way through breast cancer treatment. 

To borrow a phrase “It was the best of times, it was the worst of times.”

The worst part of the quote is quite obvious. So how is the best of times? Simple - people.

In 2015 I really learned what it means to be part of a community. I’ve learned how big people’s hearts can really be.  I've been shown the true meaning of caring. Since being diagnosed, people have been coming out of the woodwork to help me and the boys.  We have friends and neighbors stepping up and yes, complete strangers who have come together to support us.

Since June, when needed, there was meal train set up so that after a day of work or treatment or just inability to move off the sofa, we were always fed. One amazing friend has an amazing mom who got us a deep freeze so that we would have space for all the food given us and always have something on hand. I sometimes get a phone call about extra soup or baked goods and would we like them dropped off.  The food has nourished our bodies, the meaning behind it has nourished our hearts.

I worked as long as I could, knowing that I needed a large buffer to carry us through the lean period of EI disability. I had planned to work longer but back to back hospital stays from neutropenia and pneumonia forced me off two months sooner. Even then, people rallied around us. One amazing group held an online craft and bake sale, to raise funds, many of these people are total strangers to us. Others just collected among themselves, wanting to help. I have enough grocery store gift cards to get us through the next couple of months, without using the last of my savings. I was blown away, I still am. And this was all done without me even asking.

Then there is the time people have spent on, for and with us. Watching the boys during my hospital stay made it easier for me to concentrate on getting well. Taking the boys out to run around and get rid of energy is such a great help. Or even working without us to find ways to help. Some of the best times are when people find ways to help me spend time with the boys without using up my entire energy store. Me being sick, having cancer, is so hard on them, and we really need to be together as much as possible. Plus I need them around me as much as they need me around them.  Being able to sit on the bench at the playground and watch them while they run around with a friend is so much better than being apart from them. Even the school has been amazing. The teachers, principals and support staff have done everything they can to help while our life is turned upside down. I know that is rare and a challenge in a school with almost 600 kids. I’m rarely alone at Cancer agency appointments. One friend has provided a ray of sunshine to me and anyone else in the room during chemo treatments. I don’t think she even gets how great it has been to have her there.

For me, and many others, it’s hard to accept help but I’m learning, by need. I’m also learning to ask for help. The amazing thing is, I don’t often have to ask for help. It’s often already there, waiting for me to use it.

There are not enough words in the dictionary or enough time in the day for me to thank everyone who has helped. I’m not done treatment yet, but the light at the end of the proverbial tunnel is in sight. We are still being helped and will still need help, even after the physical needs are taken care of. I am blessed to know that help will be there. I also know in my heart that I need to “pay it forward”. I know the help was not given with expectation of it being returned but I also know that the joy, relief, compassion I’ve felt in this time needs to be passed onto other people who need help. Everyone should know the feeling of having the community that I do.

Laughter is the Best Medicine Sometimes

When they told me I could "probably" go home the next day, I knew I had to find a way to send off in style. I had spent the first 3 days leaving bed only to walk 2 feet to the bathroom. The last two I had enough energy to sit in my side chair for one of my meals. But really, I got winded doing either. So this was going to be an ambitious undertaking. 

Safety first. I did not want to slip and fall while so close to my release. 

Then I had to put my game face on. 

Then I needed to take a break to let my heart rate recover after a coughing jag. 

And now....

Watch me nae, nae

My legs were definitely stanky by then. I did this after watching the video twice and trying it once. I apologize to those who were more offended than amused. Well, no I don't but I thought I'd say that. I do apologize for the quality of the video. 

Happily I was released from the hospital the next day as planned. This was my second time in the hospital in just over 2 weeks, probably the same infection, but I was at different stages in recovery from my last chemo so my body's response changed each time. This did delay my chemo since I was in the hospital when it had been scheduled. They are trying to get me in next week, putting me 1.5 weeks behind. This will also delay surgery which sucks. I need to wait to hear from the surgeon to know if this can still be done before Christmas. 

What Glass?

Seriously. The third day after the Taxol seems the worst for me. Today is not so bad for a bad day but still bad.

On the bad day my eyes don't work as well. Well, actually that's not true, my eyes work fine but my brain can't handle them. I have mono vision. One of my eyes can see distance and one sees close up. My brain just does the work and knows how to translate it. Except today. Today it's harder. I can't see the bus number unless I cover up my 'up close' eye and leave only the distance one. I can mostly read the computer but I have to squint a lot and I cant look away and look back, takes to long to focus. It gives me a bit of a headache but that is mostly ignore-able because of the other pain.

The other pain. Wow. Its less common to get joint and muscle pain on the weekly Taxol. I guess I'm the lucky one. It may be because I have some underlying arthritis but that doesn't cover the muscle pain. So my knees, they are normally around a 2 on the scale when walking but on bad days they go up to a 10. Seriously, a 10 and maybe a 9 when sitting. It was getting worse each week. Last week I got a new prescription from the oncologist to fight it off. It is helping, today was more a 6-7 when walking, I can live with that (and I'm working from home so not much walking either). And I also got some T3s for when I can't take the pain (so far okay today, maybe when I try to sleep tonite). And I had none of the muscle pain. The muscle pain is best described like after you've run a marathon but didn't stretch and there is so much lactic acid in your muscles that it hurts not just to move, but to touch them.

Then there is the crying. It's random and it's uncontrollable. I just start crying. I can be walking down the street and it starts. It stops when it's ready to stop but I'm very sad the entire time. It's like all the sorrow has to come out at once. And it's not like I don't cry other times, maybe I don't cry in front of others often, but I do cry. This is different, this is deep sudden sorrow that I can't cheer away or postpone.

And I'm tired, beyond tired, too tired to sleep serious fatigue. Even if I could have coffee, it would not make a dent in this. I can't focus well, no multitasking, I have to concentrate on what I'm doing and do it before moving onto something else. This is not me, not me at all. In general my brain is a bit affected other days (Monday I could not remember how to crochet...I watched a short video and was okay after but I start there with the chains done and no idea how to do a single crochet stitch).

When I say Thursday, that is when it peaks, it starts a bit earlier each week. This week it was almost exactly 3pm.  How do I know? I was having a normal day. I was on the way to the bathroom and I had the random thought of "I hate my life" followed by a yawn. But generally I love my life. I can even sometimes forget about the big "C" but not on Thursday. That is such a common thought on Thursday, and it just comes to me. Thursdays I want to quit work. I want to quit seeing friends, I have no patience with the kids. TV sucks, food sucks, life sucks.

See on Thursday not only is the glass not half full, the glass is not half empty either. There is no glass left. It was dropped to the ground and stomped all over until it is just tiny little shards.

The thing that keeps me going is knowing that sometime Friday, there will be another glass. This one will be smaller than the one that was there the week before, but it will be there and it will gradually fill until it's half full again and I'm back to the optimist that is so natural for me. Until it starts all over again.

I have another two weeks of this drug. Two more weeks of this day (and a bit) of hell. Then I move onto a new unknown to me drug with it's own potential side effects. When I think of that, of the high incidence of nausea, of fatigue and of total lack of immunity, I get scared. If I think of it on a Thursday I get very scared. I'm not sure I'm strong enough. But I have to me, so I will be. But it sucks, it really, really sucks.

Glass half full

Today was a good day for me. Tomorrow, well, we'll see.

Everyone's experience with chemo is different. Here is a little window into mine so far. I have good days, mediocre days and days that suck. Every week what is good is less than the week before and what is bad is also work. But today was good day so I'll talk about mostly about that.

Even though this was a good day, I still have neuropathy in my feet. I have almost no hair. I have less coordination than I normally do (I should have worn an apron when I baked) and I have to read the recipes a few times to remember them.

I had some energy. Work went well, I got a few little things cleared off my list and got progress into a bit of a bigger project. Normally the boys have swimming on Tuesday so I don't get home until after 6 then its a rushed dinner and bedtime. I also have great friends, who ran my boys ragged at the beach after they were already run ragged at soccer camp. So they came home just before bedtime. So today, while I had the energy, I took a load of stuff to the thrift store for donation, took out the garbage and recycling, deep cleaned the bathroom (yuck), washed down a kitchen cupboard as part of my organizing, and did a load of laundry. After getting the kids to bed I baked scones and made a whipped spread for a potluck tomorrow. I managed to keep up with the cooking clean-up while the scones were baking. But I hit the wall just towards the end of the whipped spread. I managed to get it all in the fridge and the mixing bowl and beaters in the sink but then I was totally done.

It sounds like a lot and to me it is, but it was spread over almost 4 hours. Pre chemo that would have been done in under 2 hours and I would have still had energy to spare. So a good day is not like a good day pre chemo. And each week, a full energy meter is less than it was the week before.

I seem to have 2 or 3 good days a week, with Sunday and Tuesday the best normally. Monday would be good but, well, that is chemo day so there is a certain amount of stress plus a dose of benadryl that knocks me on my ass. Then there are a couple of mediocre days where I just get by. Then there are those days, the sucky ones. I'm not going into detail about those now because in my happy glass half full state, I can't give them credit. I'll try to do a post this week on a sucky day.

For now, even though I hit the wall, I had a good day. My glass remains half full, even if it is a smaller glass than it was last week, it is still half full!

Catching Up

This describes my summer so far. How about yours?