Thursday, May 26, 2016

Breast Cancer: At What Cost?

Even with insurance the cost of any ailment, not matter how large or small, can be formidable. For some people the $20 co-pay to see the doctor can be a dent in their wallet. And new research shows that even with insurance, depending on coverage, state of disease at diagnosis, treatment required, and many other variables, medical bills can range between $20,000 and $100,000.
now
I know that even with my health insurance, which is pretty darn good, we spent thousands of dollars on my health right after diagnosis. And with my oh-so-healthy-body, we continue to spend thousands. And you can subtract any potential salary I might have - because I can no longer work.

Going back to work after breast cancer can take a few years. I know many women who do not return to work full time because they do not feel physically or emotionally up to it. Even if there is a financial need.

Breast, or other type, cancer diagnosis, knocks your socks off. You may never regroup. You certainly never go back to your old self (just that fictitious new normal). And that you forked out up to $100,000 just to get to that new 'normal', your wallet (and retirement) won't be the same.

You can go to doctors and medical professionals to heal physically. You can go to support group and therapists to help mentally. But financially you are never the same, no matter how rich or poor you were to stop.

Wednesday, May 25, 2016

Cancer Moonshot Conference

I am not sure what to think about the Cancer Moonshot Conference. I just found out about it. A one-day conference that will bring together researchers, patients, and more to encourage collaboration and hopes to double the pace of cancer research. The conference will take place June 29 and then reports are due in August.

So? Big whoop! Seriously, my first thought was what is the point of having a conference? People do not need to be physically brought together to promote discussions. A lot can be done virtually if managed correctly. So why spend the money?

Travel and hotels are expensive. If you want to have a full day conference, you need to pay for two hotel nights or people will start leaving at 4 pm to get to their flights. If you build in some downtime, people will talk more informally and really get to know each other.

To be really beneficial, if you are going to spend the money, make it a three day conference. Make attendance mandatory if people are going to participate in the moonshot.

And about that moonshot, I understand the urge to cure cancer. I've been waiting a long time. And how are you going to do it without money? The White House asked Congress for $1 billion and only a little bit has been approved.

How are you going to double the pace of cancer research? Some things can't be rushed - like waiting for tumor growth on a research mouse. You really can't speed that up. I guess you can get people to collaborate and talk to each other more.

Is the Biden Moonshot the end of Nixon's War On Cancer"? That might help get rid of all those stupid war terms for people with cancer. Would we then end up with space terms for cancer? 'Orbiting through chemo'?

Tuesday, May 24, 2016

She Left Us A Great Legacy

Last week, Jody Schroger, passed away from metastatic breast cancer - that's the kind that kills people. Jody was legendary in the breast cancer world. Why? Because she did so much. She helped build the metastatic breast cancer community, on Twitter and elsewhere.

Jody was the kind of person we should all be. Very low key but very strong in her actions. If you google her, you will be surprised on how many places she turns up. That's because she helped found Breast Cancer Social Media.

"The Breast Cancer Social Media (BCSM) community began with a simple question – could the power of social media be utilized to unite, educate, and empower those affected by breast cancer?" 

Two breast cancer patients, one of them Jody, and one doctor set out to answer that question. They have a huge impact on the breast cancer community through their Twitter chats. I am not a Twitter chatterer but I did read through some of them and was impressed with them. (If you search #BCSM on Twitter you will see what I mean.)
I actually met Jody, really met in person, at some event we were both at. Was it a DOD CMRP or a pharma industry meeting? I can't remember. But after the meeting we both ended up in the same terminal at the airport and hung out for a while as we waited for our flights.

It wasn't a significant conversation. We talked about a few issues, chit chatted about being stuck in an airport, as well as coping with cancer and the importance of being active. Then we parted and headed for our respective gates. I had a weird feeling that I would probably never see her again. She left us a great legacy.

Monday, May 23, 2016

Disappointment

I just got back from the knee doctor. (I think I almost have a doctor for each body part these days.) What a disappointment that was.

So I met with my knee doctor and another knee doctor he brought in to consult. My first knee doctor, Dr. L, has been great. He has been talking to me about not having my ACL repaired because he was concerned it would never heal right and would always be stiff. So he wanted me to see Dr. B to get another opinion on this.

Dr B gave me his thoughts. First of all, he reiterated what Dr L had told me - no guarantee it would ever heal right. And he also said there is no guarantee my knee would be any less painful after the surgery.

So the best option for me is to wait until my knee is really bad and I get older and then have a knee replacement. I need to be older so I don't live longer than the replacement knee parts (because if you replace it a second time, it never works very well). And if they do the ACL repair now, it would make the knee replacement more difficult and riskier that it would not do as well.

In the interim, I got a cortisone shot in my knee to see if that helps. I can go back and get more cortisone shots if it acts up. (Did I say I hate needles?) And if it starts collapsing on me (when I am walking on a nice flat surface), I should go back and see him. And continue the PT exercises for eternity. Also, wear a knee brace as needed. (Knee braces on the beach cause tan lines.)

So I am disappointed. I was hoping for the magic silver bullet that will cure all my ailments, including my knee. Damn.

Sunday, May 22, 2016

Not only high prices but short changing!

Cancer drugs can be life savers, but also budget breaking, bankrupting expenses. And the blah, blah, blah from the pharma manufactuers are that they have programs for people who can't afford them.

Herceptin is one of those life saving drugs that do not come cheap, while saving many lives of women with Her2 positive breast cancers.

Now Genentech, manufacturer of Herceptin, has been accused not once, but multiple times of short changing hospitals in the amount of drugs provided. Of course, they are denying the claim. But since it didn't happen just once, I have very suspicious.

I try not to be cynical but when something happens more than once, it becomes a duck (walks like, talks like, etc.).

Saturday, May 21, 2016

Relearning to Balance

I have had any ups and downs recently. My life has changed significantly in recent months since I stopped working. It has given me much more time to spend on things I enjoy. And time to spend on things around the house that I never used to be able to get to.

On the other hand, as I spend more time on the things that I enjoy I find I lose track of time and end up over doing things. Then it takes me time to recover. And I don't get to the rest of the things I need to do - like cook dinner.

Last weekend we had a party on Saturday afternoon. Sunday morning I didn't feel too bad so I went to an event I really wanted to attend. Then Monday I was too tired for anything. I didn't even go to the gym. I basically stayed home all day recovering (except for a single doctor appointment).

After resting for a day, I felt some what better and attempted to take care of things around the house on Tuesday for a few hours - paint a few walls. Bad idea. I ended up being wiped out again and needed to rest again on Wednesday and Thursday morning. Thursday afternoon I had my knitting group and had to run a few errands. Again Friday I was fairly tired but did make it to the gym and the grocery store. And spent Friday afternoon doing recovering.

This is not balance. This is up and down and up and down and more down and up a little and down, and down and down. Then I spend 12 hours in bed mostly asleep and many hours watching bad tv while knitting and reading.

I need to relearn how to balance my life so I can take care of the things I want and not spend so long recovering. Its a new lifestyle so it needs a new balance.

And there are only so many HGTV shows and Lifetime movies I can watch before my brain starts to rot. And there are only so many books at the library I want to read.

Thursday, May 19, 2016

The Importance of Social Media For Cancer People

I read an interesting article yesterday on how social media did not bring back the Chibok girl - the girl in Nigeria who was kidnapped by Islamic terrorists a couple of years ago and reappeared out of the woods.

After the kidnapping of over 200 girls in 2014, a Nigerian lawyer came up with the #bringbackourgirls. This exploded over social media and all sorts of people tweeted, selfied, blogged, and wrote about it all over the internet. But what exactly did that do to bring them back? Nothing. By doing this, we showed we cared. But we didn't solve the problem.

Social media is about showing you care about things. That's it. You can tweet, blog, facebook, message, instagram, etc your emotions showing how much you care. But, as the article says, if you want to act - donate, walk to work, etc. Do something, don't just show your emotions.

Social media also provides emotional connections with your friends and family. This is another emotional tie. But sharing a picture of your cousin's new baby isn't the same as seeing your cousin's new baby.

For cancer or other types of  patients, social media allows us to show our emotions about dealing with our cancer and share our lives with our friends and family. The only reason I started blogging was to communicate my cancer crap with others (anything to do with cancer is crap). I am not trying to change the world.

I just want to write to vent. Any crappy diagnosis comes with a roller coaster of emotions on the side, or actually swallowing your brain. There are so many ups and downs you can't keep up. I found I needed a way to vent my emotions and get things out there. I also went to message boards and asked questions and got more emotional connections that became friends and people who relate.

I think there are many other cancer people on social media who may have calls to action, requests to follow, or other content in their writings. But they are also sharing their emotions and creating connections.

I am not chasing followers. I frankly do not care how many people read my blog. I do not want to save the world. I do not want to cure cancer. I wouldn't mind if a cure was found but its not going to be on my blog. I just want a way to show my emotions.

Wednesday, May 18, 2016

Color Me Appalled

I think of the state of California has some of the most progressive (and craziest) laws and regulations. I also think of California as a state full of all types of people and as being inclusive and recognizing so many of its diverse constituents. I also realize that the state has had some huge health insurance gaps in the past and the majority were resolved with the Affordable Care Act.

But I am absolutely appalled by what I recently learned about state funded breast and cervical cancer treatment program. Currently the program has these limits:

  • Women under 40 are not eligible for free mammograms in the program. So if a woman with no history of cancer in her 20's or 30's found a lump, she would have to pay for her mammogram out of pocket. 
  • Breast cancer treatment is limited to 18 months for young women. So if you haven't finished treatment in that period of time you are out of luck.
  • Does not offer treatment if a young woman has a recurrence in the same area. 
I have to figure out why this program actually exists for young women. These limitations are insane. It provides no coverage.

So the Komen foundation (doing good for once) actually introduced a bill last year to get rid of these limitations. Actually I should not be sarcastic about the Komen Foundation (for the cure) here as this is a good example of the other types of work they do - besides sticking a pink ribbon on everything. 

The bill is making its way through the government and should eventually become law. I am just stunned that it is needed in this day and age.

Tuesday, May 17, 2016

Metastatic Breast Cancer Treatment Protocol

While I do not have metastatic breast cancer, I have friends who are stage IV and follow their treatment issues. One thing I have wondered what the standard treatment protocol is for MBC as I have often heard complaints about treatment options for them. Finally, I found an article covering the options, the full text of it can be found here.

First of all, I want to say I am a little appalled by this statistic:

"Depending on prognostic factors, in the worst scenario, up to 30% of node-negative and up to 70% of node-positive breast cancers will relapse. The prevalence of metastatic disease is high because many women live with the disease for several years."

I had no idea the numbers were that high. I had one tiny little node that was positive at my diagnosis so that puts me in the second group, I think. But 70%? I do have to keep in mind that the words "up to" and ignore the "70". But yowza!

Other words that are intimidating are:
  • Isolated local–regional recurrence should be treated like a new primary with a curative intent including ‘secondary’ adjuvant treatment modalities as appropriate
Okay, that's pretty good if isolated recurrences can be treated with a curative intent. Its nice to know you can have a recurrence which is not considered terminal.
  • "The management of metastatic breast cancer (MBC) should involve all appropriate specialities in a multi/interdisciplinary team (medical, radiation, surgical and imaging oncologists, palliative care specialist, psychosocial support), and patients should be offered personalized appropriate psychosocial, supportive and symptom-related interventions as a routine part of their care.
Well that's nice to know they want all sorts of help to support the patients and they include the emotional side as well as the medical side. Often I think doctors don't think outside their medical realm. And a team discussion on treatment protocol is better than a single person's decision.
  • There are few proven standards of care in MBC management, therefore well-designed, independent, prospective randomized trials are a priority.
Yes few standards. Clinical trials are key.
  • The vast majority of MBC is incurable and hence the main treatment goal is palliation, with the aim of maintaining/improving quality of life, and possibly improving survival."
Thanks for putting this out there. Incurable is not a nice word. But I think its important that it is stated. Too many have misguided thoughts that 'oh, we can just fix this'. Please do not let the patients have any delusions about their prognosis. It would not be fair.

I strongly suggest people read this article to better understand the options available and what should be expected for a treatment protocol. Often patients are not fairly treated especially if they do not know what they should expect. I hope this gets expanded in the future.

Monday, May 16, 2016

I think I am tired

Its 10:49 AM and I am still in bed. I was going to go to the gym today around 11 but that's not going to happen. I do have a doctor appointment at 215 PM that I will go to. But I am tired.

This is what happens when I make any attempt to be normal. I went to bed at 9:30 PM last night. I admit that is a little late for me. I just over did things a bit this weekend and I didn't sleep well on Friday and Saturday nights.

We had a party Saturday afternoon and everyone was gone by 8:30 PM and I went to bed around 10. I rested for a bit in the morning before the party. Yesterday I did go out for a few hours in the afternoon. But today I am exhausted.

Unfortunately when I do too much (and it doesn't take much to for me to get to 'too much'), it takes a few days for me to get back to normal. Luckily this week I have a few days where I can take it easy in a row.

This is what I hope the Social Security Disability people will some day understand. I can't work or do anything for more than a few hours before I have to rest. If I push myself to do anything that involves more than a few hours, I pay the price. I was trying to work four hours a day, two days a week and it was too much for me.

But I digress. I will spend three days recovering from two days of pushing myself. (Thank you fibromyalgia.) My first goal is to get my butt out of bed and have some breakfast.

Friday, May 13, 2016

Coping

Some days I cope better than others. Today is not that good of one. Its 4pm and I have a thousand things to take care of and I am exhausted. I am not sure I can do much more today.... I need a nap.

Actually I haven't decided if I cope better now than in the past. Or if I am just turning into a cranky b*tch. Today I am not so sure. I am tired. I am cranky. I think its time for take out pizza for dinner.

Thursday, May 12, 2016

So What Would You Do Differently?

We cannot afford to beat ourselves up for 'woulda, shoulda, coulda' moments. The past is the past. It is a different world than now. Everything that happened in the past is no one's fault, especially your own, But we can make changes based on what happened before so that it becomes better in the future. So if you don't think you handled your cancer (insert other nasty disease name here) diagnosis well, you can make sure you do it better if there is a next time.

I already had a 'do-over'. I screwed up my first cancer diagnosis and did it better the second time around. But I still would do some things differently if there is a next time.

My first cancer diagnosis I did everything wrong. I didn't seek additional emotional support. I didn't talk about it. I couldn't didn't research the crap out of it. (To be fair, it was 1981, there was no internet, and the few times I was near a medical book, I didn't really understand anything I read.) And I was miserable about my cancer for years.

At my second cancer diagnosis, I said I am in control. I joined a support group before my second surgery. I talked about it. I blog about it. I researched it. I put myself in control of my medical crap. I was not going to let cancer suck any more life out of me. I took some time to figure out how I was going to deal with it.

But have I learned anything that would help me with another cancer diagnosis? I think so.

I do need to say that since my second cancer diagnosis, I have had a couple of other not so good diagnoses. Nothing that will kill me but all will work to try to make me miserable for the rest of my life - degenerating disks, rheumatoid arthritis, and fibromyalgia. I think those count as 'life changing'.

How did I handle them? Pretty well. I researched them. I talk/blog about them. I did work on some emotional support. I didn't let them suck any enjoyment out of my life.

So if another cancer decided to try to suck some fun out of my life? I think I would do the following:
  • research it
  • talk/blog about it
  • find emotional support as I feel I need it
  • plan a vacation to go get grounded and develop a plan to take care of my sanity during treatment.

I think that last one is something I would do differently. I would take a few days/weeks to focus myself on a plan for coping. Then spend a few days at the beach to 'rest up' for treatment. Going to the beach is always very important. And I am always happy at the beach.

Tuesday, May 10, 2016

Fibromyalgia

How is life with fibromyalgia? Well, not so fun.

Let's see, there is random pain in my body. There is fatigue (and insomnia). There is cognitive impairment. And depression.

Sometimes its hard to decide how I feel from a specific ailment. I mean which pain is bad back, rheumatoid, fibromyalgia or osteoarthritis. I can't always tell. My doctors say it can be very difficult to tell and not to worry about it. But I can tell you when I lie awake at night that I will be exhausted in the morning, like today.

And there is another factor that causes so much fun in my life. Cognitive impairment. Yes, that is like chemo brain that doesn't go away.

Depression? Yes, well lack of sleep, no brain cells and random pain would depress anyone. This is why I keep being asked if I have any suicidal thoughts. I can tell you I do not. Because it would be yucky! I would like to stick around for as long as possible.

I hadn't really contemplated the impact of all the joys which come with a fibromyalgia diagnosis. It came on top of my RA diagnosis, or mixed in with it. But I read this article this morning about a woman's lawsuit against her former employer because she was dropped from their disability plan after she left her job because of health reasons due to fibromyalgia.

I get the same issues she does. But I could never job three miles every day.

Monday, May 9, 2016

Doing Too Much!

Of course I have over-scheduled myself for the next few days weeks. I am going to hate myself.

It all started when we decided to have a party, sort of an open house. Originally we thought we would do it in the middle of January, just after we moved in. Obviously that schedule was pushed back. Finally we bit the bullet and picked this Saturday as the date. (And if you are looking for your invitation, maybe its in your spam filter.) So we have a few things to do this week.

I have to finish painting our bedroom. Its been half painted since the end of March. I put on a coat of primer last week and the first coat of paint this morning. I have to finish before the cleaning lady comes on Wednesday. (We don't want it to look half painted at our party because it is just plain ugly half painted.)

I also have to do laundry (5 loads give or take) and dig up some jerusalem artichokes from a friend tomorrow. Later this week I have two training phone calls for my replacements at work, getting my hair and nails done (I can be such a girl), my knitting group, the grocery store, start preparing food, have the party and then collapse.

But I can't collapse. Sunday I promised myself I would go to the NH Sheep and Wool festival.  I am going if it kills me. I just learned about Sheep and Wool festivals from someone in my knitting group. Who knew they happen all over the place every spring. I can't wait. If I have any energy at all I am going.

I know I am doing way too much. I know its not going to easy on me. But we have really looked forward to the party. And I really want to go to the Sheep and Wool festival. These are both important to me. I know its going to be a lot. But I will make sure I get plenty of sleep and rest between all these activities.

Part of being me, I keep doing what is important to me. I am not going to give in to all my ailments and sit around. I also want to enjoy myself.

Sunday, May 8, 2016

More Thoughts On Clinical Trials

Clinical trials are a very important part of medical research and drug development. But they are not as safe as you may think.

This week's Parade Magazine showed up in my Sunday paper as usual. The front page was covered with a picture and headline on a cancer 'miracle cure' for cancer.  The article goes on for multiple pages and  tells the story of a woman who was close to death when she found a clinical trial that saved her.

She was one of the lucky ones. She found a great clinical trial and it saved her. But the magazine also notes:

"...clinical trials can be risky. According to Center Watch, a research-information firm, about 1 in 30 participants in drug trials suffers a serious side effect and 1 in 10,000 dies." 

However you do get free treatment and additional medical supervision. 

I cannot overstate the benefits to clinical trials. No one wants me in a clinical trial because I have too many health issues. But I am sure there are many other healthier people out there who could and should participate in clinical trials. So go find one here.