Thursday, October 8, 2015

When I do something I do it right

So back at the end of July, I fell and my knee bent sideways (or my knee bent sideways and I fell). I was told at that time that the x-ray showed no bone issues and it was probably all ligament and tendon. I was later told by my knee doctor (yes I am amassing doctors for each body part) that it was probably not that bad and PT was the first step. The PT guy thought it was probably only my meniscus.

I went back to the knee doctor after PT and he sent me for an MRI to find out more about my knee. I had a follow up yesterday.

Well, it turns out when I do something I do it right. It turns out I tore my ACL and I have an edema on the top of my tibia. Basically that means that I have a crack in the bone that is not impacting the function much (think of the coffee cup you have with a crack in it that still holds your coffee - my knee doctor asked me if he could quote me on that because it was pretty much an exact description).

So now the plan is to wait another four weeks and have more x-rays and then decide what to do. He wants my tibia to continue to heal before anything and for me to step up my PT. He said the pain is caused by the bone and the lack of stability is caused by the ACL. I said I don't care about the pain but do care about the stability issue.

I told him I don't want to even think about surgery until after the first of the year.

Now I can say it, to quote Charlie Brown:

Wednesday, October 7, 2015

We are still waiting!

I haven't nagged in a while but I would like to remind the world that all of us unhealthy people are waiting for that cure. We have aches and pains and doctor appointments and prescriptions (out the whazoo!). We would like those cures so we could return to our normal life as soon as possible.

Once diagnosed with something nasty, life changes (and we are told there is this new normal - that doesn't exist) and are stuck in a yucky limbo waiting for medical advancements to put us back together.

There are a lot of politics and corporate policies and big brother and much more involved in medical research. We don't really care. Take your billions and fix us.
K? Thanks.

PS I am whining and in a cranky mood today.

Tuesday, October 6, 2015

Who has the time?

I started wondering (which I admit can be a dangerous proposition) who has the time to waste spend on all this pinkification? It takes a lot of shopping to buy all the pink crap, time getting dressed in all the pink stuff, and everything that goes with it?

I am just amazed at the people I see out almost in a costume of pink at this time of year. Everything from jewelry, feather boas, shoes, bags, clothing, etc. Then there are the pink ribbons on everything. NFL players have pink towels. Buildings are lit up in pink.

I admit I bought a pink t-shirt with some slogan on the back of it to wear to chemo. I wore it once to my second infusion and never took it out of the closet again. I like the color pink and wear it often but I do not pinkify myself.

Personally I do not have the time or the energy to allow any one thing to take over my life like that. I live a multi-faceted life (note the big word early in the day) and allow myself to enjoy many different things, and squeeze in a few million doctor appointments.

I cannot imagine allowing anything to monopolize my life like that. I think a bad medical diagnosis, like breast cancer, is a wake up call that life is important. But it is not appropriate or healthy to obsess over it and allow it to monopolize your life. No one thing should be so important in anyone's life. Life is meant to be enjoyed and not have an obsession. Don't waste your time on any one thing.

Monday, October 5, 2015

House selling and buying

So life is rolling along as we try to get our house ready to put on the market but we also need to find a new place to live. We have finally decided the house will go on the market Oct 16 and have two days of open houses. 

We keep house hunting as well and finding houses we like but we can't put in an offer until we have our house on the market. If we do no one will accept our offer without a kick out clause (meaning they can accept other offers and ditch ours in the meantime). But we are trying to be good sellers and are house hunting because our realtors tell us to. 

Its just aggravating. However we have decided what we want in a new house. The real answers are: one floor living as much as possible, lots of storage, and a fire place and garage. Plus in our price range and near enough to my husband's job. Nothing complicated or fancy. A newer kitchen and bathrooms and no wall paper would be nice. But we can be flexible. They are all blurring together. 

In the meantime, we just pack and 'negotiate' with each other - mostly 'do you remember the house with the whatchamacallit?' The answer is always 'no, which one was that'. Maybe someday we will find one that is memorable and we can actually remember it.

Sunday, October 4, 2015

Its been a long ten years

I used to be a healthy person, really. Those of you who have known me for more than ten years know that. But for the rest of you I need to reassure you I was healthy at one point.

One of the big reasons we are selling our house is that we bought it when I was working full time in Boston. I needed the easy access to the city. I will never work full time again, nor will I ever work in Boston.

We bought this house in February 2005 and moved in. We got married in May and then my health went (I really do not believe that my marriage played any part in my body's decision to go to hell in a hand basket).

That August, I was home alone waiting for my husband to come home from work so we could leave for a long weekend when I started experiencing intense abdominal pain. So painful, it took me ten minutes to reach across the bed to get the phone. My husband had a new office phone which was saved in my cell phone which was far away - across the room - so I just called 911 for an ambulance.

It turned out I had fibroids and one had died off and caused a massive internal infection which put me in the hospital on IV antibiotics and ended up with a hysterectomy and home on medical leave for six weeks.

A year and a half later, I was diagnosed with breast cancer which lead to three surgeries, chemo and radiation. Then my gall bladder was removed. Then my back started hurting. And lymphedema, rheumatoid arthritis and fibromyalgia.

Now I am looking toward to retirement and a healthier body. If that is possible. Could I ever be healthy again?

Saturday, October 3, 2015

A busy week

I have a busy week scheduled. Some how, I have four doctor appointments, plus I need to work two days, go to the gym three days, and keep packing to move. Oh, and find a new place to live.

Tomorrow, Sunday, we are having our neighbors over around 9am so they can take a look at our house to see if they want to buy it. I am giving them first dibs because they are nice and I know they have been  house hunting for a while. But that means today I have to make the house look semi decent so they can actually look at it tomorrow. Then we are going to four open houses in the afternoon.

Monday, Wednesday, Thursday, and Friday I have doctor appointments. These are just a major time suck and I need to remember everything I want to ask them all (that means I need to start write them my questions down). And I need to get bloodwork done.

I think I am going to work Monday after my first appointment and then another day later in the week, maybe Thursday.

Oh, and did I say my back is giving me lots of pain these days? That could make me whiney.....

Friday, October 2, 2015

Once again its Pinktober

Except I do not celebrate Pinktober. At this time of year I look forward to apple picking, Columbus Day weekend, leaf peeping, and Halloween (which is the best annual excuse for a sugar high).

I am braced for the onslaught of pinkness and really do not care for it. I will not be walking, running, shopping, or donating for anything pink. Because of Pinktober, I actually resist contributing to anything pink for the month.

And it is also Liver Cancer Awareness Month.

I think this year I will support Liver Cancer instead of pinkifying anything.

Thursday, October 1, 2015

Taking charge once again and chaos

I usually go along with the flow of medical care and go to my appointments like a good girl. But every so often I take a step back and make some changes.

When my therapist retired at the end of last year, I switched to a new one who I didn't like. Then I switched to another. I really don't like her and find her pretty useless to me. So I think she is getting the ax when I see her next week.

She also sent me to a fibromyalgia support group, one of the most useless meetings I have ever been to. I will be opting out of that as well. One of my big reasons is that I feel I get no support from it. And as its an official 'group' at the hospital, I have a $20 co-pay every time I go. I sometimes go to the breast cancer support group at the hospital and there is no co-pay so I have no idea why I have to pay for this one. But not any more.

Right now I have enough going on with out wasting time and money on useless meetings. Our house is a disaster right now. The only things in the living room are a sofa, a sideboard, two lamps and the tv on a tv stand. Everything else is stuffed into another room. The master bedroom is empty of everything but two dressers. We are sleeping on the mattress and box spring in the guest room which is packed full of boxes and other stuff. The kitchen is also a mess. This is all because we are having the walls painted. We hope they will be done today so we can put everything back tomorrow.

The exterior paint is being touched up. We had it painted nine years ago with a 'lifetime' paint that hasn't lasted. The manufacturer is providing new paint free of charge that was supposed to arrive Tuesday. I called yesterday and found out he 'forgot' to ship it. He swears he would ship it yesterday so we should have it next Thursday (it comes from British Columbia). I will be on the phone with him later today to make sure it shipped. Now it looks like the house will be painted the day before it goes on the market on 10/15. 

I don't need any more stress. Grrr.

Wednesday, September 30, 2015

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?

Tuesday, September 29, 2015

Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

Monday, September 28, 2015

There is no good cancer

I cannot tell you how annoying I find this. To many people state that thyroid cancer is a good cancer. It is not good, its cancer.

A woman in Alaska who has had three cancer diagnoses stated:

""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."

Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.

I do not understand that people who think thyroid cancer or any cancer is a good cancer.

Read more here:

Sunday, September 27, 2015

Okay, I just don't like or respect the guy

A few days ago I wrote about the drug whose cost was going from something reasonable $3.50 per pill to $750 because the new company owner wanted to. Due to pressure, they have now said they will reduce the price but didn't say when or by how much.

This same person has a history of filing frivolous lawsuits to interfere with FDA approvals and also hedging against the company stock. So he ends up making a bundle while slowing down drugs reaching the market. So this lovely gentleman has a history of doing this:

"Until this week, Shkreli was largely unknown beyond Wall Street and the pharmaceutical industry.He gained sudden notoriety for jacking up the price of Daraprim, a drug used to treat life-threatening infections, just two months after his company, Turing Pharmaceuticals, acquired the medicine.
Initially defiant in the face of an onslaught of criticism, the 32-year-old chief executive agreed on Tuesday to lower the price, although he has not indicated when or by how much."

But wait there's more!

"Shkreli employed a similar pricing strategy at Retrophin, another drug company he ran before its board of directors booted him from his executive position. Last month, Retrophin accused him in a lawsuit of using company funds to repay investors after his hedge fund became insolvent."

Isn't this illegal?

"Shkreli also has a track record of betting against pharmaceutical stocks — a practice known as short selling. And in at least two cases he pressed federal regulators to reject the companies’ product at the same time he was betting the stocks would go down."

I think I have a nasty name for him now.

"In 2010, while running his hedge fund, Shkreli wrote a letter to the FDA urging the agency to turn down an application from MannKind, a company he was shorting that was seeking approval for an inhaled insulin product, according to news accounts. The agency initially had multiple issues with the drug but eventually approved it last year."

And again:

"In 2011, Shkreli then turned his attention to Navidea and its cancer diagnostic, called Lymphoseek — this time going so far as to a file a “citizen’s petition,” a more formal kind of regulatory complaint. Shkreli has no formal medical or scientific training. But while shorting the firm’s stock, he argued there were problems with the design of clinical trials used to evaluate the radioactive agent.

He publicized his complaints and financial bets against Navidea, which caused the company’s stock value to drop by nearly half, to about $250 million, leaving the drug maker in turmoil.

By filing the petition, Shkreli “almost derailed the Lymphoseek program,” said Steve Brozak, who heads WBB Securities, which helped raise money for Navidea (which was known as Neoprobe at the time). “He created an illusion there was an issue [with the trials], but the only thing he did was make money by shorting the stock. Meanwhile, patients could have been penalized.”"

What a 'nice' guy. He is lining his pockets with complete disregard for the patients who might actually benefit from these medical developments. He is young (32), but I am not sure he will ever grow out of this, unless he ends up in jail.

It is people like this who contribute to the expenses of pharma companies who are trying to bring new life saving treatments to market.

Saturday, September 26, 2015

Brilliance at work

In recent years there has been a huge controversy about Santa Monica CA high school being full of PCBs. The result has been multiple teachers and staff have been diagnosed with thyroid cancer. Remediation has taken place in the worst areas.

Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.

I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.

But brilliant idiots at work here.

Friday, September 25, 2015

What would you do?

This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:

"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"

My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?

Personally I find  the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.

Thursday, September 24, 2015

We have nothing to fear but fear itself

I have learned a bit more about Jackie Collins and keeping her breast cancer quiet. It turns out she could feel a lump two years before she went to a doctor. She told People magazine shortly before she died that she was scared to tell her doctor because of her family medical history.

I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.

The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.

And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)