Tuesday, June 30, 2015

Another story that makes me mad

I read this story on the UK's Daily Mail and it makes me mad. Basically what happened is a young mother who was pregnant with a third child was diagnosed with breast cancer, that had metastasized to her lungs,  shortly before she died before she died. Then her family was told she also had Ewing's Sarcoma at her post mortem.

Some diagnosis and treatment delays can be put on the mother's reluctance to have treatment because she was pregnant or that she blamed some of her symptoms on her pregnancy. Some of the other delays probably can be blamed on doctor's not listening to her as much as they could.

I can completely understand a woman who is pregnant is reluctant to take prescriptions or have scans because of the baby's  health. But if you ignore symptoms you can end up in dire straits. The article states that she had shoulder pain more than six months before her death but didn't call the doctor because she wanted to spend more time with her daughters.

But also I think doctors need to tell their patient's that the symptom could be something else and needs to be checked. And the patient's concerns should not go by the wayside. A breast lump could be a milk duct while pregnant but if it lasts, it shouldn't be ignored and probably deserves a biopsy.

And as someone who has multiple ailments, I really take the time to listen to my body and try to figure out what an issue may be from. Is it new or is it related to something I know about? If my feet or hands hurt, I attribute it to RA.But pain across my back usually is fibromyalgia. A cough would be very unusual for me and would prompt me to be concerned.

How long does it last? If it lasts more than a week and doesn't seem to be getting better, then I definitely call my doctor.  That is my rule of thumb these days.

How painful is it? If causing me extreme pain and lasts for more than a few minutes, I usually will call. If its moderate pain, I try taking pain meds and see how it goes. But if it recurs or is new and lasts, I will call as well.

And you should never be too busy to take care if your health.

Monday, June 29, 2015

Retraining my doctors

One of the skills I have developed over my years of health ailments is to train my doctors. I can present as a unique patient with my many health issues. I have learned that I need to make sure they are taking all my issues into account without appearing as a paranoid patient. But its all about me when I am paying to see them.

Today I see my second new therapist. My original therapist dared to retire so she recommended a new one for me - who turned out to want to talk about herself more than about me. So I tried a different one and the jury is still out. She keeps suggesting support groups for me. I like the idea of support groups but honestly with my health these days, they can be hard for me to get to. I no longer go to evening events unless obligatory.

I plan on having a discussion with her that she can't just send me to support groups. I want a therapist I can talk to about my health issues and how they can be hard to cope with. I don't want someone to tell me go to a support group to handle your problems. I do not believe there is any support group out there for me because my medical issues are too complex.If she can't be retrained she will be replaced.

Do I use therapy as a crutch? I sometimes debate this with myself. Do I really need therapy? Sometimes I don't. But sometimes I really do. I am dealing with my issues right now that I need to talk about to help me cope. So don't talk to me about a support group, okay?

Sunday, June 28, 2015

Just because we can doesn't mean we want to

Genetic testing is all the rage now. I mean we have movie stars and news casters who are public with their cancer diagnosis and genetic test results. But not every one is not a fan of them.A recent study found that just because patients could have genetic testing, they didn't necessarily want it.

"The study found that of the 49 patient participants, all of whom have a family or personal history that puts them at-risk for development breast and other forms of cancer, more than one-third declined multiplex testing.
"

I am on their team. When I was diagnosed with breast cancer, I was told that for people who had both thyroid and breast cancer it was recommended that they get genetic testing for Cowden's syndrome. I basically went along with what they wanted and had the test. Then I thought about, well what the hell would I do with that information? My doctors told me if I had it, I would receive more screening than if I didn't.


Really? More screening? Is there more screening that I could have? I have had cancer twice and RA, fibromylagia, and my back. I see doctors all the time. I have had 25 appointments in the past six months plus five separate trips for blood work. These include CT scans, x-rays, eye doctor, dentist, specialists, and more. I don't think I can fit in much more into my schedule.

I am in the group of people who say just because we can do something, doesn't mean we have to or want to. For example, nowadays they microchip all our cats and dogs. So in theory we could probably microchip people. No one is every microchipping me. But I could clearly see this happening in a science fiction novel. Just because we can buy a new car every year, and some people do get a new car every couple of years, doesn't mean I see any need or want to. 
Plastic surgeons tell us that they can fix wrinkles and aging. I'm fine with the way I look. I don't want any more surgeries. Or to color my hair to hide the incoming grays. At least I have hair and I'm still here.

Genetic testing is possible and the science part of the world is all over it. But not every one wants it. They prefer to go through life with the crap shoot that comes along with it. I don't need a crystal ball in my life. It makes life more interesting to say the least.

Saturday, June 27, 2015

Can we please be done with this and move on?

How much longer will we have to put up with time wasting, stupid arguments against the ACA? How many more Supreme Court Rulings do we need?

I realize that not everyone likes the fact that we have national health care now. But I am sure there are a lot of other laws on the books that some people don't like. In fact, I am sure there are some people being stupid and making senseless arguments about them as well.

Personally I would prefer that we move on from these stupid arguments and focus on other issues which are a real problem in this country - racism, discrimination, and poverty.

I am not saying that the ACA is perfect. But it does provide access to affordable health care for many who previously could not afford it. What's wrong with that?

Friday, June 26, 2015

Over testing vs. patient concerns

A new study in Canada states that early stage breast cancer patients are getting too many pretreatment imaging tests. An average of four after diagnosis. That's a lot.

In my case I had a mammogram that went bad and led to an ultrasound followed by a biopsy and a diagnosis. Then my surgeon sent me for an MRI to confirm there was nothing else. Then two surgeries, chemo, radiation, and hormone treatment. At some point a couple years after radiation,  I had a PET scan to confirm some aches and pains nothing - mostly because I was freaking out. Now I just have mammograms. As well as too many doctors wanting to check for lumps.

I am not sure what other tests I could have or should have had. Or needed. I think I got my share of radiation through all of that. So I am not sure what other screens I really needed.

But let's go back to the freak out I went through and a doctor sent me for what was probably an unneeded PET scan that found nothing. (I  no longer see this doctor, my radiation oncologist, as she used to tell me I shouldn't work because I had cancer and my husband should support me fully and other stupid statements.) This makes me wonder how many other doctors send patients for unneeded scans just because the patient mistakenly believes they have metastases. The doctor does the easy thing and sends them for some test so they do not have to deal with the freak out part.

In my opinion this goes back to the bedside manner stuff that isn't very present in medical school. If a patient is stressed about something, I do not think that sending someone for scans is always the right way to resolve the issue. I think it deserves an in depth conversation that includes the current screening standards, odds of their being an issue, and how to cope with the stress.

I asked my back pain doctor about more scans for my back as it had been five years since my last spine MRI. His response was there is no need for one as nothing indicated anything had changed. I can live with that kind of response. It keep me from being stressed - no indication of any changes. What if that my radiation oncologist had started a conversation with me about reasons the PET scan was not indicated?

In view of increased medical over spending and over treatment concerns, more conversations are warranted instead of more testing.

Thursday, June 25, 2015

Are you normal?

So are you? After cancer, we are supposed to reach a 'new normal'. That means I am on my third normal at this point. I am not sure how normal that is. And I have completely lost track of what normal is supposed to be anyway.

This is the yesterday's Prickly City. For some reason it resonated with me. And I don't believe that 'new normal' crap anyway.

Wednesday, June 24, 2015

How much does that cost?

You go shopping and you can find price tags and signs to tell you the price. You go to the dentist or eye doctor and ask them for a price before a procedure and they tell you the price. You call the hospital and ask for a price and they can't tell you. Don't you want to know what something will cost before you have the procedure?

Here in Massachusetts they passed a law 18 months ago requiring hospitals to provide pricing in 48 hours. But many of the hospitals didn't meet that requirement when called for a price.

I really like this idea that hospitals provide pricing up front. The purpose of the law was to providing pricing transparency. It makes sense. So why don't they provide it? I have no idea. One of the hospitals called, out of 23, had a person dedicated to answering these requests. I think more hospitals should do this. Maybe the rest were not equipped for these questions.

Okay, not a very profound thought this morning but I need to get to work on time.

Tuesday, June 23, 2015

Doctors are factoring in costs too

Last week, I blogged about insurance companies wanting their money back if one of the expensive drugs don't work. Now oncologists are going to start tracking the effects, side effects, and costs of the expensive cancer drugs.

In recent years, I have had doctors suggest drugs to me and also comment on their costs. In previous years, I do not remember hearing about costs. And they are now quick to pass along any savings cards available from the manufacturers.

"Alarmed by the rapid escalation in the prices of cancer drugs, the nation’s leading oncology society unveiled Monday a new way for doctors and patients to evaluate different treatments — one that pointedly includes a medicine’s cost as well as its effectiveness and side effects.

The American Society of Clinical Oncology’s “value framework” is part of a change in thinking among doctors, who once largely chose drugs based on medical attributes alone. The major cardiology societies, for instance, are also starting to factor cost into their evaluations of drugs."

It is definitely the time to do this. Drugs that cost north of $10,000 per month are cost prohibitive for many, especially financially strained cancer patients. And drug companies do not seem to care about that. They care about their bottom line and how much they can charge.

So now if insurance companies and doctors are going to start pushing back on the drugs, maybe they will listen.


Monday, June 22, 2015

My big picture

My blog may be titled breast cancer but that is no longer my main focus for my health. The main focus of my health is my thyroidcancerbreastcancerrheumatoidarthritisfibromyalgiabadback ailment or tcbcrafbb for short, also known as Caroline's ailment. (My husband decided that I have so many things going on that it must be a single ailment that is unique to  me.)

The problem is that there is no doctor that specializes in tcbcrafbb, nor are there any support groups for it. I have a group of doctors who talk to each other and defer to each other with their specialties. I present a unique case to my medical team.

Seriously, I can no longer afford the luxury of splitting my health into separate ailments. Each one affects me in differently. When I go to anyone of my specialists, I present a special case for them. My rheumatologist is concerned about my back and my fibromyalgia. My endocrinologist is concerned about my breast cancer and my RA and fibromyalgia. My oncologist is concerned about my thyroid cancer. My dentist and periodontist struggle to keep up with the rest of the doctors. My ophthalmologist is concerned about my medications and RA which give me dry eyes. And the list goes on.

Any symptom would could be indicative of cancer is not thought to be unlikely and untest-worthy. For me, because of my medical history (blah, blah, blah), I get sent for a test. And that is a big part of my big picture.

So my blog could be renamed Caroline's Tcbcrafbb Blog but its not likely.

Sunday, June 21, 2015

Annual state of denial

This week, I believe, I have my annual mammogram. I can't remember when it is and that is just fine with me. I just cannot afford to let my life be stressed out by a single annual appointment. I have too many annual/six month/three month and other appointments to get stressed by any of them.

In the meantime, I have other things going on. First of all the new kitties have settled in quite nicely. We have kept two of them. Layla was just too shy and intimidated by the other ones. That little saying that 'curiousity kills the cat' is very true with two less than a year old intrepid explorers.

I took my pills out of the closet to fill our weekly pill boxes. Immediately Boots (dark gray with white feet boots) climbed up on the closet shelf and tried to explore this newly accessible area. Operation fail. Peanut (the all black one), a/k/a Penguin, who will now be known as Zitipat is sporting a scrape from some effort to squeeze his tiny body into or out of an even tinier space.And they managed to rip a curtain rod out of the wall - pulling the bracket and nails right out of the wall.

But I woke up in the middle of the night with a purring cat sleeping on me.

So life moves along. I will survive handle my mammogram and any other medical adventures coming my way

Saturday, June 20, 2015

Back home!

I've been traveling again. And last week. I am sick of traveling. Travel is nice but once I get on a plane, all I want to do is go home. But this most recent trip was very interesting. This is where I have been this week:

"As a breast cancer advocate, I recently had the opportunity to serve as a consumer reviewer to evaluate research applications submitted to the Breast Cancer Research Program (BCRP) sponsored by the Department of Defense.  As a consumer reviewer, I was a full voting member, along with prominent scientists, at meetings to help determine how the $120 million appropriated by Congress for Fiscal Year 2015 (FY15) will be spent on future breast cancer research.

Consumer reviewers represent the collective view of breast cancer survivors and patients, family members, and persons at risk for the disease as we evaluate the impact of each application. As a consumer reviewer, I am honored to be included and always leave with hope for the future of breast cancer as the latest research clearly shows that we are moving closer to a cure.

You can get more information on the Breast Cancer Research Program, including how to serve as a consumer reviewer, at the DOD Congressionally Directed Medical Research Programs Website: http://cdmrp.army.mil."

I can't tell you how optimistic I feel every year when I come back from this trip. And, no I can't tell you anything about the specific research because (a) its confidential and (b) I erased my brain so I don't remember it anyway.

Usually all of us consumer reviewers are women but this year, we had a man join us as he had breast cancer.

Friday, June 19, 2015

Doctor chasing

This is always a pain. You need to talk to your doctor. You contact them, they call you back and leave an ambiguous message that doesn't allay your concerns and requires further conversation. You call back and they are gone for the day. You try again the next day and talk to their office. They call back and you miss the call because you can't take the call at that nano-second because your life does not revolve around the phone. And it continues.

Finally you resolve to tether yourself to your phone, and not talk to anyone else in case the doctor calls back. Eventually you find our you are not going to drop dead but need another test or follow up so you can continue the process all over again.

Well, that's not exactly what is going on but close. I'm still waiting to call the doctor back again and am in mid-chase. My goal is to make contact today because I want an answer before the weekend. But I have meetings and am traveling.

I just want an answer. Why? Because I can be whiny and hate waiting for medical information.

Wednesday, June 17, 2015

That cancer part that never goes away

Ask anyone with cancer and they will tell you the cancer part never really ever goes away. You can think, and dream, and ponder, and hope, and do anything you want. You get slashed, burned, and poisoned (surgery, radiation, and chemo) and deal with baldness, nausea, fatigue, weight gain, and more. You get countless scans, blood tests, and millions of doctors.

But it still hangs there in the background to wake you up in the middle of the night with the little 'what ifs'. Those cause the stress that does all sorts of bad things to your body (that might even cause the cancer to come back). And might cause overeating which causes weight gain (which might also cause the cancer to come back.)

You can also go to therapists and support groups and they give you advice on how to deal with your emotions, your feelings, and your fears. They have such great suggestions (my personal favorite is when they told me to avoid fatigue by putting on a terry cloth robe instead of toweling off to save the extra exertion.)

My cynical side often comes out when I am dealing with the cancer things. I am also waiting for that supposed cure that is getting closer and closer every day.

Tuesday, June 16, 2015

Pets make the best medicine

My husband is a bit irked with me these days. Our cat died in April and his passing upset us both greatly. We had long agreed when he was gone, we would adopt two cats, so they would not be bored and likely to become destructive.

Once Shere Khan was gone we agreed not to adopt cats until our vacation in May to Florida was over. Then we decided we shouldn't adopt until the end of summer due to our summer travel plans. Then I kept looking at pet adoption sites finding adorable, homeless kitties.

Finally I got him to agree to adopt sooner as opposed to later. Then we started fostering three cats. Then I went away for five days and left him alone with all of them. I came home and will leave for three days starting tomorrow morning.

Now I have proof that pets are the best medicine.


So maybe we will keep all three. I mean anything to keep me as healthy as possible.

Monday, June 15, 2015

Excuse me, we would like a cure

Actually a lot of cures. Please.

Biotech and big pharma have come up with all sorts of pills in the last decades. Some of which ease symptoms, think pain meds for arthritis or other ailments. Others represent cures, think penicillin for infections. While the ones which ease symptoms are helpful, personally I would prefer cures.

Last year Gilead Pharmaceuticals released Solvadi, which cures Hepatitis C for 90% of its patients. Previously the only cure for Hepatitis C was a liver transplant. A not so good alternative with a long wait period. This is the $1000 a pill which costs $84,000 per cure for a seven week course of treatment.

In addition to its eye popping cost, it has raised the bar for biotech and big pharma.They need to stop looking at incremental medications which offer a few weeks or months of extended life or symptom easing pills and focus on the medications which provide true cures.

Biotech is teetering on the edge of a precipice where the big dollar mergers and investors could become a thing of the past. Incremental advances for huge prices may also become history.

As the patients, we should be able to add our two cents to the discussions as well.

Sunday, June 14, 2015

Pay for performance

I like this idea. It would mean that if the expensive prescription medications did not work, you (and your insurance company) would get your money back. I really like this idea.

I can't tell you how many medication bottles I have in my closet for things that either didn't work or gave me an allergic reaction. But I still had to pay for them.

But in the face of these attention grabbing high prices for new medications, the insurance companies want to be able to get their money back.

"Among those leading the drive for new pricing is Express Scripts, a company that bargains with drug makers on behalf of employers and insurers. It is advancing a plan that would offer different reimbursement rates for drugs that treat more than one type of cancer based on how long the drugs extend lives. Insurers, including Harvard Pilgrim Health Care and Blue Cross Blue Shield of Massachusetts, are examining that payment arrangement and others, such as rebates to patients and insurance plans in cases where drugs aren’t effective.

The new payment criteria are likely to emerge slowly and vary widely based on types of medications and payers, which include insurance companies and some government plans such as Medicaid. But proponents agree they need to rein in prices of specialty drugs, which can run up to tens of thousands or hundreds of thousands of dollars a year."

"US health insurers, which have long talked about paying for a drug’s value, now see an opening. It remains difficult to quantify value for thousands of medications ranging from acute care drugs like antibiotics to chronic disease treatments for conditions like diabetes and high blood pressure. But advances in information technology are making it easier for doctors, hospitals, and insurers to keep track of patients and how they respond to prescribed therapies."

"“It’s a huge change for the pharma companies,” Sherman said. “They realize their prior argument — that they can’t be held responsible for the [patient] outcome — doesn’t work any more and they have to get with the program.”"

Think of it this way, you buy a pair of pants and like the way they look. But you get home and decide they don't fit right. You take them back and get a refund. Now you get a prescription and try it and you are stuck with it, even if it doesn't work. That part needs to change.

Saturday, June 13, 2015

What book to read?

This question and response below appeared in today's Boston Globe in the Ask Amy column..
=================
Q. A few weeks ago I ran into an acquaintance who has been fighting breast cancer for the last year. We had a lovely conversation. She is very forthright about her diagnosis, and her spirit is admirable. I mentioned I was midway through a book that I knew she’d love. I promised to share it when I finished it.
As it turns out, the last quarter of the book is devoted to the protagonist’s own cancer diagnosis and his eventual death.
Should I still give it to her?
The book is very good. I know she’d appreciate how this character evolves, but I don’t want to be insensitive. Then again, if you eliminate books with people dying in them, the library shelves would be bare.
What do you think I should do?
Literally Unsure
A. You should give your friend a different book that you also love but does not stress your acquaintance with an intense dying scene.
===================

I think I disagree. I would still share the book but tell her it includes a cancer diagnosis.I would say something like "I thought this was a great book and think you would like it. But I wanted you to know someone is diagnosed with cancer in it." Let it be the person with cancer's decision.

Many people are unsure how to handle cancer and talk to people about it. By sharing a different book, they are avoiding the elephant in the room.

I really hate it when people try to shield me from something or someone that they think might upset me because of my health. Face it, my health is a big part of me and by shielding me, you aren't doing me any favors. And you might piss me off.

Friday, June 12, 2015

Staring out the window, procrastinating

As I sit here looking out the front window with a cat next to me and another two lurking around, I am gathering my thoughts about today. I have to go to the gym. I mean I really have to. I only went once this week so far and am traveling again next week and will miss another couple of days. I took my time getting up this morning because I really needed some sleep so I feel a bit better.

I am procrastinating on my day. I have things I want to do - the gym. I have things I need to do - my medical school (which is fascinating so far) and some volunteer work. I have things I must do - two doctor appointments. These are the cause of my procrastination. I have been in avoidance mode for them. Well actually for one of them because it is a test and if I don't have the test, I don't have to deal with the results which will probably be okay. But because there is that 'what if' thing going on in my brain I have stress.

That is the life in the medical ailment world, mostly the cancer world but with most big ailments. You see a doctor and they send you for a test. They don't like the results of the test so they refer you to another doctor who wants more tests 'to be sure'. Healthy people who haven't had many medical maladies don't usually get this far. They get a 'see you in a year for a follow up'. But because of my ailment history, I never get that I always get the test 'to be sure' and sometimes they are not so good.

So I am procrastinating. But because I am hungry and need to get going to the gym, I will start moving. The question will be if procrastination returns or I allow stress to rule the rest of my day.

Thursday, June 11, 2015

Doctors on Twitter

A while back, I blogged about getting medical advice on Twitter. I am clearly on the fence about this one. I found an article on Cure Magazine on doctors who tweet which discusses gaps in knowledge between doctors and patients.

It is clear that there are gaps between what a doctor knows and what a patient does - that's because they went to medical school and we didn't. I think if knowledge can be shared between the two groups that is great.

However the volume of cancer information tweeted by doctors on cancer is clearly skewed. Breast cancer is the most tweeted, 19%, followed by lung cancer, 9%, which does not reflect the number of diagnoses. So if you have breast cancer you can probably find a lot of information on Twitter, particularly on the Monday #BSCM chats where a single doctor, the host, (who I follow but rarely read) generates most of  the tweets.

Blah, blah, blah, this is all great. But (and you knew that was coming) I don't really care.

I mean I am on Twitter and have been on it since about 2007. But I am not a huge user. My blog generates a tweet every day and I do sometimes go read and follow and reply to tweets but not often. And I know a lot of people who are online but don't use Twitter for whatever reason either.

So go ahead and get information on Twitter if you want. But its a small number of  patients and a small number of doctors who generate most of the information. I'm okay with this. I can't read every bit of information out there on my ailments and can only absorb some of it anyway (more than my brain capacity). But if you tweet and like getting information Twitter, you can.

Wednesday, June 10, 2015

That proposed new cholesterol drug

No I don't have high cholesterol (one ailment that I do not have) but I have been reading the stories on the new recommended cholesterol drug. On one hand it makes sense that other cholesterol drugs are needed besides statins. Not everyone tolerates them, about 10% don't in fact. And some people have genetically high cholesterol.

Fine, I get it. But this new drug doesn't impress me. Why?
  1. Because it is an injection. 
  2. Because it is expensive.
I hate injections. My husband does my weekly methotrexate injection. It would be much easier if it was oral. Needles are a pain to deal with. And I hate needles. And disposing of them and getting shots and just icky poo!

Also, cost is a real issue.

"If the new drugs are approved, it is estimated they would cost between $7,000 and $12,000 a year per patient. In comparison, statins cost between $48 a year (for generic forms), up to between $500 and $7,000 a year (for brand-name drugs)."

That's a big increase. I realize that it won't be as cheap as a generic but what about developing an affordable medication? And an oral pill for $48 or one or twice monthly injection for $7000-$12000? Seriously?

However, "if we [balance] the cost of these drugs over society and the cost to our health care system for caring for patients who suffer the consequences of vascular disease," Antman said, "it's possible that the calculus would suggest this could be a cost effective and attractive approach.""

Blah, blah, blah. The cost to society? Sure. I get it but what about the cost to the patient? And why should that be part of the pricing equation? 

In a normal world, not biotech or pharma, pricing is done for a lot of different reasons. Everything from market placement ('if its expensive it must be good' is a real thought process) to basic cost and supply and demand. In the dream world of medication pricing, these basics are evidently thrown out the window. 

Anyway, I think I will consider new medications as news when they are affordably priced. And I need to stop whining about medical costs, I know but the whole issue just pisses me off. And if I whine about them, I can avoid thinking about my own medical crap.

Tuesday, June 9, 2015

Medical School

Although I was designated the office doctor last week, I am now going to medical school. It started yesterday and continues for the next 7 weeks. Someone referred me to it a while back and I registered at canvas.net and now it starts.

I was traveling yesterday so I haven't had a chance to start my first class on Anatomy and Physiology. It should take me an hour or so each week. I am looking forward to it. The other courses are a second week in Anatomy and Physiology, Cellular and Molecular Biology, Immune System, Infectious Disease, Neuroscience and (my favorite) Cancer Biology before finishing up.

Why am I adding to my busy schedule with mini-medical school? Because I hope it will help me understand my body and why it keeps on having so many issues. I figure I am a prime candidate to learn about medicine as I seem to have a lot of interaction with the medical profession.

What I really want is a cure for all that ails me but I doubt that will happen anytime soon. But in the meantime, I can be smarter.

Monday, June 8, 2015

Excuse me while I take a nap

So I am traveling, in fact on the way home. I got to see relatives I never see. But I don't travel well because I need to nap. I arrived Thursday evening and went to bed early. Then Friday I took two naps. Saturday morning I slept until after 10. Then I needed to lie down before going to dinner and then going to bed early. Sunday I also took a nap.

I interspersed my naps between fun things but still I was horizontal often.  I also found that I get very tired while driving.

I may have to curtail my driving adventures in the future, which is no fun. But today I did drive through the Elk and Buffalo prairie at land between the lakes on the TN/KY border. If you are in the area, its worth the stop. And I didn't have to get out of the car to watch a whole herd of about 40 buffalo.
That was pretty neat but now I need a nap as I sit here waiting for my flight. Maybe I am turning into an old fart. (No don't answer that, because if you are my age, you might be an one too.)

Friday, June 5, 2015

I'm travelling

I'm traveling. But my husband is home with the cats. This means I got up way too early yesterday, 4am to be precise, for my early non-stop flight (because of my lymphedema) so I could drive 200 miles after visiting the Country Music Hall of Fame. Then I drove over 200 miles across three states to get to visit my aunt and cousins.

I am tired. I don't travel well. The airport check in was surprised at how small my checked bag was. I can't deal with a big piece of luggage anyway. And I figure the world is full of laundry machines when I travel by myself.

I did get a good nights sleep and will be okay. We wanted to do gardening today but since its raining, that will have to wait.

Wednesday, June 3, 2015

Office Doctor

My co-workers have a sense of humor, especially about my health issues. And they don't know half of them.

Two of them were talking. One said 'go ask Caroline, she's the office doctor'. Apparently since I have 'every medical ailment known to mankind' (their words), I have the most medical experience and should be consulted on any medical ailments.

I guess I got a promotion.

Tuesday, June 2, 2015

Lets talk about drugs and their pricing

There is new talk about looking more at drug pricing. This also applies to other drug pricing.

Okay, here's the discussion. If drug A costs $1000/patient per month and drug B costs $300/patient per month, drug A is obviously much more expensive than drug B. But if B doesn't work quite as well as A, there is a problem. Because if B results in quality of life issues and hospitalizations and shorter survival rates, there will be additional expenses so the cost savings is not there any  more.

So now the proposal is that we must look at toxicity and efficacy. This means that we need to look at issues such as quality of life, hospitalizations, and survival rates.

I like this idea. If a less expensive drug has more adverse reactions, is it better to go with the more expensive one? I think that depends on the side effects. For example, I have two rheumatoid medications. One of them causes me to have a suppressed immune system and I end up with a bad cold that lasts a week or two, every couple of months. But the other one can cause nausea (my favorite) and is harder on my liver, and may not keep my RA suppressed as much.

So I have to decide which is better for me. Lots of colds which cause lost income etc or bits of nausea, potential liver issues, and RA pain.

I am still on the fence about this one.

And the same applies for breast cancer treatment with Tamoxifen. This is the baseline drug for preventing recurrence. But if the side effects are too much and end up affecting the patient's quality of life, is it better to switch a newer, more expensive alternative?

But others are promoting more discussion on this topic.

Monday, June 1, 2015

Hope

The one thing we all have to keep at all times is hope. Yes, hope. We all must continue to believe there is a rosier life out there for us.

But for a cancer patient, we must keep our hopes alive. What do I hope for?
  • A cure for cancer
  • My cancers do not come back
Two hopes. Nothing fancy. Two little phrases. Very simple. I work on these two hopes differently.

First I read medical research but do not obsess about it. I read about on going research and upcoming developments. I read about doctors' opinions of the research as well. I know not all research is going to help me. Some of the research may not pan out. Some of it will pan out but wont be available to patients for another 10-15 years.

But all of it gives me hope. I can see progress in the works to make sure fewer people go through medical misadventures, heal better, have a better prognosis, and lead healthier lives, even with a cancer diagnosis.

Second I do everything I can to make sure my cancers do not come back or reappear elsewhere in my body. I try to take care of myself. I go to the (damn) doctor as often as I should. I take my prescriptions. I go for suggested tests and other fun misadventures. I get exercise. I eat right (mostly). I do my best.

By being proactive in my health, it allows me to feel comfortable that I am doing all I can to make sure my cancers do not reappear. Or if they do, they will be caught early.

Hope is optimism and I need to keep it close in my life.