A needle free future

I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.

I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.

I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles,  have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!

When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)

When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even  felt them but it was traumatic for me.

Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.

One of those blog posts

This is my third try to write a blog post this morning. The first one was on quality of life post cancer treatment. The second one was on the s-word. The third one is on my day because I am not inspired to write about the first two.

Today is one of those days with a thousand things to do at home and around the house. My husband has a bigger list than me because I can't do all the things that need to be done. I am doing the laundry so I get points for that. And I will clean the kitchen in a bit so don't think I am lazy.

Last night we went out to dinner and got our desserts to go so we could eat it tonight. Well, I got on the phone with a friend and ended up eating my share of both desserts so I am feeling a little full this morning. I did eat some fruit and a yogurt but will find something more later on.

My back hates me again/still today. I take pain pills and suck it up. I could be cranky. But I'll skip that part for now.

Face it, I live a boring life and have no inspiration today at all..

Comparisons and Standards

Take two people with the same ailment in the same room and one of the first things they will do is start comparing their ailments, doctors and treatments. This is normal. (People who have not had the ailment are not allowed in these conversations because they will insist on comparing the treatment their cousin's hairdresser's neighbor's dogwalker's mother in law had for a similar but different ailment, was treated by a different treatment protocol, and then died after month's in pain in a greatly emaciated state.)

Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.

I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.

One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years  now. Mine is still uncontrolled but is slowly being tamed.

When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.

Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.

My rheumatologist's office sees me every three months for now and I  have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.

Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.

This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.

I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!

I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.

Day by day

These days I live things day by day. What I mean by this is I plan to have a normal schedule and be the normal me (as much as I can be considered to be normal) and then I start making alterations to my schedule based on how I feel. Some days I keep my schedule and some days, I make short cuts, go  home early and take naps.

Yesterday I was supposed to go out to dinner with family but I opted to stay home.  I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.

This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?

I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.

Now I know, nap first, motivate later.

That was stupid (on my part)

They (the all knowing all powerful they) insist that patients should get and keep all of their medical test results. They say its the smart thing to do. So being smart, yesterday I went off to get a copy of my CT scan results so I can read it myself and obey 'them'.

Now I'm sorry I did.

I know the value of having a doctor interpret the results but the ER doctor had already told me no injuries, just some arthritis in my neck.

I also know that some things show up on test results that the radiologists comment on but aren't really important and can be ignored.

But now I want to call my doctor to find out if I should be concerned. Both tests, the head CT and the neck CT, conclude with no acute findings with chronic findings as noted. Acute means no injuries. Chronic means never going to go away.

I had a spine MRI about four years ago and will attempt to dig out the results which are buried in my folder of medical test results later today. I do not believe that MRI reported any chronic findings with my neck or cervical spine.

My concern is where the CT test results say things like:

"There is mild prominence of extra-axial volume loss" when they talk about my brain.  Is my brain shrinking?

"There is minimal degenerative anterolisthesis at C3/4 and minimal degenerative retrolisthesis at C4/C5. A C4/C5 there is minimal narrowing of the central canal due to broad-based disc osteophyte. There is moderate narrowing of the bony right neural foramen due to disc and uncovertebral joint degeneration."

My concerns are:

1. If these are chronic are they going to get worse or stay the same?
2. Why did they happen?
3. Should I be concerned? Which I guess is my main question.

As far as the ER doctor was concerned, I was not injured in the accident but I don't think he cares about the other stuff. Nothing against him as its not part of his job.

I will call my PCP and see if I can talk to her about this and find out if I should be concerned or if I should make an appointment. I was stupid. I should have ignored the report until my next appointment.

Accident update

Here's the damage. There is a possibility the car is not totaled but the garage says its borderline. I had a very busy day yesterday dealing with the accident details.

I went over to the garage where the car was towed with the intent of cleaning out anything of value and seeing if I could find my driver's license and eye glasses. My purse dumped out so I thought my license might be there. The airbag blew my glasses off so I was wearing a spare pair. When I arrived there the man who towed my car told me the other driver was arguing with the police when he was towing the cars.

I packed up all sorts of stuff in the car - my Aruba ice scraper, about $5 in change, mittens, hat, shovel, maps, CDs, etc. I found my glasses under the seat of the car. Then I realized I forgot my phone so I couldn't take a picture. I decided I would have to come back. My drivers license was no where to be found.

Then I went to the police station to pick up the report. The woman noted that it was very long. The part about me, driver 1, was brief. I was driving down the road and the other car pulled out in front of me and we collided and I was taken to the hospital.

The part about the other driver went on and on. She changed her story. She argued with the police that it was my fault. She told the police I needed to take responsibility for my actions. Her husband showed up and told the police how the accident happened (even though he wasn't there) and argued with the police some more. Then he wanted to know where I was and what hospital I was in and how I was doing. They had to explain the HIPAA laws to him twice. Driver 2 was cited for failure to yield and not having a drivers license with her.

I called our insurance company who said that if she was cited she would probably be at fault. And that not only do we have collision insurance we have medical coverage that will take care of all the medical bills incurred in my fun evening at the hospital. Yippee!

Her insurance company then called me. Driver 2 argued with her insurance company as well. I had to send them the police report. I like the part that she wants me to take responsibility for my actions and she keeps arguing with everyone that its not her fault.

Then I decided to go back to the car to take a picture of it, get the last of the CDs out of the console and find my glasses that I had put down while I was there. Stupid me.

I decided since my license was really missing, I would apply for a duplicate online. Then my husband came home and realized he had forgotten that the police had given my license to him - they must have found it in the car. Grr.

Lastly, the appraiser called last night and he is going to look at the car today and will let us know if its totalled.

Today I will also stop by the hospital and see if I can get a copy of my CT scan report to read the gory details about the arthritis in my neck. I still have a fat lip and some muscle aches and pains - in addition to my normal pains but am doing okay.

One last note is that when they took me to the hospital, I was wearing clean underwear which was bright pink and matched the polish on my toes which was visible through the hole in my sock.

I had a big adventure this weekend

This was not an an intentional adventure but an accidental one - literally. I will preface this by saying I am fine. But the car is not and is probably on its way to the big junkyard in the sky.

Saturday afternoon after returning from a luncheon, I decided to run out to the liquor store to get some wine to have with the curry I was cooking. I live in a neighborhood of small streets with a lot of intersections without stop signs. People often coast through them and assume that no one is coming, which is often the case as the roads are very quiet.

I turned off the main road and went one block up the steep curvy hill to turn left onto the two block long street which runs parallel to our street. 2/3 of the way down a road comes in on the right where the driver must turn left or right. I wasn't going more than 25 mph and all of a sudden there was a car in front of me turning right into the road. I tried to brake but bam.

All of a sudden the car was full of smoke from the air bag. (I repeat I am fine.) I got out of the car fast thinking it was on fire (because I am just so smart). I approached the other car and asked the woman if she was okay and if she could call the police because I didn't have my phone.

Two (wonderful) neighbors and spouses came out. One neighbor is a nurse and one is a dental hygienist. They gave me ice and towels for my bleeding lip. They let me use their phone to call my husband at home after they also called the police. The hygienist looked at my teeth because the air bag hit me in the mouth. She thought my teeth looked okay but suggested I get them checked out. The nurse also looked at me and said I should get checked out because of the airbag.

The police and fire department arrived and told me I should get checked out because of the airbag as well. They said that often injuries can be hidden because of the force of the airbag. They always recommend hospital trips when air bags deploy - standard protocol. I considered  not going but then I decided I would be up worrying all night.

My husband arrived and held my hand and talked to the police. They were very nice as they put me on the 'comfy' backboard with big collar thingy. And away I went in the ambulance. They took the long way to the hospital so I got to spend more time sliding around the back board and saying ow at every bump.

About 15 minutes after I arrived at the ER my husband showed up. He had to take home the wine and beer and turn off the stove where I had left dinner simmering.

I got to wear the lovely collar for several hours. It was relatively uncomfortable but bearable once they got me off the back board. The doctor checked me out and wanted me to have a CT scan of my head and neck because I had pain in the back of my neck.

The doctor and nurses were all impressed with my lists: they needed to know - what medications I am on (7 daily prescriptions), previous surgeries (8 in all), and current medical ailments (RA, fibro, osteoporosis, cancer twice, degenerating back disks and more). They then switched from being impressed to the 'with your medical history, we need to be sure' mentality. They offered to send me home with pain meds but I thought I had plenty already.

It turns out I have arthritis in my neck and compressed discs as well. No wonder my neck hurts - now I have another topic for my rheumatologist next month. (But there were no brain abnormalities which means no sneaky brain mets - the hidden fear of all people who have ever had cancer.)

They finally let us go about four hours after we got there. I was happy to go home and have chocolate cake for dinner.

Of course I could not find my driver's license. My purse dumped out all over the floor of the car so I suspect it is there still. I will check today when I go to empty all the personal belongings out of the car. I also have to see if my glasses survived. I think the air bag knocked off my glasses and I didn't realize this until the ambulance was halfway to the hospital.

I also have to go to the police station and get the full accident report. I do not think I was at fault because I had right of way but you never know how these thing work out. Then I have to fill in my report online and call the insurance company.

Once I am done with all my paperwork, I might get some work done and then go to the gym to work out some of the stiffness. I am a little stiff but not horribly. I also take some heavy pain meds every day so who knows how I would really be feeling if I wasn't taking them.

I need to widen my interests

Yesterday I went to a luncheon sponsored by the New England Coalition for Cancer Survivorship with a friend. She has had breast cancer and remarked when we arrived that she wasn't used to seeing men at cancer events. Breast cancer events are mostly filled with pink clad women.

The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.

However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.

There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.

I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).

So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.

Recovering after a very long week

In the past months, six or so, my energy levels are significantly down. I need to make sure I have enough down time and time to stay home and do nothing. I can tire myself out quite easily and then pay the price for days.

I had a three day work week this week but am exhausted. I tried to sleep late this morning but the cat sat on me because he wants food and the sun was streaming in from the room across the hall. Note to self evict the cat and close the other shades. I will try again tomorrow.

Emotionally and physically it was a tough week. I came back home after a 380 mile to visit my brother on Monday. Tuesday was another 2" (which turned into 10") snow storm that kept my husband and I home for the day. We reassembled the (damn) dryer after my husband's minor repair. I got a fair amount of work done as well. I even snuck out to the gym in a lull in the storm.

Wednesday, Thursday, and Friday I went to work for six hours each. Wednesday I hit the grocery store on the way home, Thursday I met a friend for a walk, and Friday I went to the gym. Thursday night I was so tired and in so much pain in my feet and hips, I got in bed at 430, PJs by 6 and my husband cooked dinner which I ate in bed. I was exhausted on Friday morning.

Today I have a lunch to go to and am organizing a volunteer event that I won't attend. I am not attending because of pain and fatigue. Well guilt might get me to stop by for a few minutes.

That's just the physical side.

I also found out this week a breast cancer friend is facing a recurrence. We do not know details yet but the words chemo, radiation, and hospitalization have been bandied about. I will try to call her today. One friend talked to her and said she was really out of it but is still perky.

Another online friend passed away after a long fight with cancer. I have never met her but she was one of those people who was incredibly supportive to others in their copings with cancer. Dying way to young, younger than me.

Finally an old friend's husband with stage IV colon cancer has progression in his disease despite treatment.

I hope next week is better. My goal is to get a lot of sleep tonight and rest tomorrow. I also am home on Monday where I can take it easy then as well. The cat will have to learn to let me sleep in.

Too many screening tools

Now the big 'hoo haw' in the medical world is preventative care. You know they want people to have annual physicals and get certain screening tests - mammograms, PSA, and colonoscopies. I personally think a bit of prevention goes a long way.

But we can't focus on that and test everyone to death (bad choice of words there?) can we? I mean its bad enough that I go to my PCP for a physical and I get sent for blood tests. I used to get annual chest x-rays because I have had a thingy in my lungs but after thirty years of annual commemorative pictures, they have changed protocols and said I no longer need those.

I also still get annual visits with the radiation oncologist and breast surgeon, three times a year with the medical oncologist, twice a year with the endocrinologist and four times a year with someone in rheumatology which is more than the average bear. Because with my medical history, they need to be sure but I am not so sure about the rest of the population. How many tests do they need? I question this.

Last year medical organizations came out about tests we generally do not need. I blogged about these somewhere in my blog but can't find them... I have to get to work, I don't have hours to dig through my blog so trust me it is there.

Now medical research is busy adding new screening tests. Some British researchers have found a link between lifestyle and developing rheumatoid arthritis. They found:

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

 "... they found that smoking, obesity and having diabetes, all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease."

Their recommendation, as a result, is to develop a screening tool to identify patients with a higher risk and who could be given advice on  how to reduce their risk. (I'm not signed up for any special social class so how would I know if I am at a lower risk?) Not helpful.

So let me review this. The movement these days is to reduce unnecessary tests and research is creating more tests. Sounds like a vast conspiracy to me.

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

Share personal information or pay up

 

This is such a load of crap. CVS announced this week that employees must share their body fat percentage and weight or pay an extra $50/month or $600/year for their health insurance. Excuse me but this is none of their business.

The claim is that it helps the company save money in insurance costs because its a preventive measure and helping people get and stay healthy. I have a real problem with this on several levels.

Its none of your insurance company's business as to what is wrong with you. This leads to bias and to loss of or lack of coverage.

Body fat percentage is not a good value to represent overall health. While my body fat percentage is probably  higher than it should be, I go to the gym three times a week and get the recommended amount of exercise each week and not everyone can saying that..

Finally knowing someone's weight and body fat percentage does not get them to the doctor's office for a check up which is more important. Even skinny people need check ups.

Its no one's business what I weigh. That's between me and my scale and the doctor's office. During all my medical treatments, my husband is allowed to know everything but my weight. I am working on my personal deflabbification project. I will share I wear size 12 pants and wish I wore size 10 - that's all you need to know.

I understand the point is that insurers want healthier people but this is not the right way to do this.  Find a different way. Work with the patients. Do not invade their privacy or financially penalize them. My insurance company gives us a freebie if we get an annual physical.

An even playing field please.

I admit to being a little confused here. Why aren't manufacturers of generic drugs held to the same standards of the patent manufacturers and vice versa? This is a tad confusing.

There are lawsuits out there about side effects from generic drugs which are being heard in the Supreme Court.

Basically a generic is the same as the original medication. Federal law requires generic drug makers to provide identical ingredients, warnings, and labels as brand-name products.

If generics make up 80% of the drugs sold in the US, they should have the same accountability standards as the original manufacturer. And any side effects are therefore more likely to occur to the generic manufacturers.

"Drug companies have long asserted various doctrines of pre-emption, saying they are protected from most product-liability claims if they have met federal safety approval standards."

[This is a load of crap in my opinion. No one is above the law.]

"They argue that federal regulatory judgments trump state consumer safety laws, which are often tougher than Washington's standards.

But the high court had given a big victory to patients and consumer rights groups in 2009 when it ruled in favor of plaintiff who sued Wyeth -- now owned by Pfizer -- after losing an arm to gangrene from a common, brand-name anti-nausea prescription medication. She had won a $7 million judgment from a Vermont jury for her claims."

[About time.]

"Then last year, the Supreme Court ruled 5-4 that generic drug companies do not share the same level of responsibility as makers of brand-name equivalents, to update their warning labels when significant new risks emerge."

[Seriously?]

Its time to even the playing field here.

More research is needed

I ended my experiement and found that more research is needed:

First of all I should have done a bit more planning. I would have found that it is really 380 miles to visit my brother, not 300 miles. I turned on the GPS in my phone and realized I was wrong. Crap. Not a good way to start.

Then I should have brought more water with me. I brought one little bottle and ended up having to buy water - I hate buying water because of they are all the single serve ones (which should be outlawed as far as I am concerned).

I also have some questions for the FastLane/EZ Pass people. In Massachusetts, they are 15 mph lanes. In New York, they are either 20 mph or 5 mph. There was one toll plaza which alternated 20-5-20-5. Go figure. I have no idea either.

If one wants to go shopping on their drive, one should make sure the stores are open. I stopped at one outlet center because it was right off the highway, I wanted to run one errand and it was almost 1/3 of the way. The store is listed on the outlet center's website but when I got there, there was a little asterisk which said *Coming Soon. There was no asterisk on line. A little truth in advertising, please.

Another helpful tip is to combine potty breaks with refilling the gas tank. Its stupid to make two separate stops.

It doesn't help if you bring yogurt to eat in the car if you do not pack spoons.

The weather should have cooperated better. It snowed from Albany all the way through Syracuse not really sticking but enough to make visibility fairly poor and to have crap being thrown up from the road by the other cars. (And the stupid pedestrian who was standing on the median strip on I-90 at mile post 234 trying to cross in the snow storm, I hope you are okay. I did call 911 for you.)

I found that I needed new wiper blades as they did not clear a round area right in front of the driver's face so I needed to lean right or left, or stretch up or scrunch down to see during the snow.

Oh and on being tired, did I survive. When I arrived, I was exhausted. My right arm and shoulder were fairly tired. It is hard for me to drive with both hands on the steering wheel the whole time. One handed driving seems to work better (except when in the snow). Once I arrived, I was happy not to drive for most of the weekend.

Running around after four kids did tire me out all weekend. My brother made fun of me for going to bed early (brat). But I had fun with the kids too.

The ride home I was very tired and found my husband wasn't feeling well. I rested and then went out for a few essentials. We both went to bed early and feel better, but its snowing very hard so we are going nowhere. A good day to catch up at home and spend some time together.

Before my next trip, I will do more research, bring more food and water, and make sure I have good wipers. I'm not sure how I will do on a longer drive, even without snow.

Experiment concluded

I survived my experiment. I will analyze my data and figure out my analysis. I have a feeling I will need more research because my back hurts and I need a nap.

Its never too late

 

Its never too late and never give up. This is a wonderful story o a woman with terminal leukemia, with a short time to live. But it was still not too late to get married, in the hospital with the chaplain.

Cancer may take many things from people but it can't take away all our dreams

Are we overdoing it?

More women are opting for double mastectomies, even if they do not have cancer in both breasts. Here are the numbers:

"The rate for women choosing to remove both breasts when only one has cancer jumped from 6.7% in 1997 to 24% in 2005,..."

"About 70% of women in the United States who have both breasts removed after a cancer diagnosis don't have a proven medical reason for undergoing the procedure,..."

So why are we doing this? Lots of reasons:

• Implants have fewer problems than in the past.
• Plastic surgery has had many advances.
• We want it now mentality.
• The overly hyped awareness of breast cancer

If we look at these last two reasons, they may be the root of all the reasons. In the past decade or so, we have been accustomed to the instant gratification or instant problem solving. Amazon started bringing us our purchases overnight. Problems are more easily solved. We can find information instantly so we want to fix things instantly as well.

Pinkification has also caused more awareness and availability of information.

"A growing awareness of breast cancer survivorship makes undergoing mastectomy not as foreign or frightening as perhaps it once was. An online search shows a seemingly limitless number of breast cancer support groups, with a growing collection dedicated to women considering preventive surgery.

Dr. Mark Sultan, chief of the division of plastic and reconstructive surgery at St. Luke's/Roosevelt and Beth Israel Medical Centers in New York, said he's seen a 20% increase in five years of high-risk, yet cancer-free women coming to his office seeking mastectomies.

These patients often arrive telling him what kind of surgery they want because they've read about certain procedures online, and in many cases, they've viewed hundreds of before-and-after photos as well."

These are examples of how the world of medicine and being a patient is changing. But maybe we are overdoing it. A double mastectomy is not a minor surgery. I have heard of women being in surgery for 10 or 12 hours with multiple surgeons and months of recovery. Never mind the problems of lymphedema and other risks in the future. 

I think I would prefer to keep my body as intact as possible if I possibly can.

An Experiment

Today I am experimenting. I am going on a road trip to visit my brother and his family 350 miles away. This is an experiment because my recent health issues make me tired, cranky, and in pain often. I am not sure how I will physically feel when I get there. (And for all you would be burglars out there, my husband will be staying home and will be protected by the cat in my absence.

I am sure I will be tired when I get there but it is important I see if I can. Its sort of a test for me. If it is successful, I will go on vacation this summer with a friend and visit Misty of Chincoteague which is a much farther drive. Its probably 500 miles and we will have to avoid New York City. (Yes we know Misty is no longer alive but I am sure her great-great-great-great-great-great grandchildren will be there and we can see all the other ponies.)

I also have a car load of stuff which my husband packed to bring to my brother. My little car is full of:

• a vacuum cleaner & extra bags
• two table lamps
• a 9x12 area rug
• a kitchen table
• a folding book case
• a TV
• a suitcase
• me

I think that's it. The suitcase apparently has to ride in the front seat with me. My husband packed the car and I haven't seen. I hope I can use the rear view mirror. My brother will unpack while I supervise. Loading and unloading the car are not part of my experiment.

I will report back on how I do with my experiment. In the last six months I have cut back on a lot of things that I do so this is a real test on how real my limitations are.

In the category of 'now they tell us'

Today's New England Journal of Medicine announces that women who are treated with radiation for breast cancer run a higher risk of ischemic heart disease. They claim that's okay because they got rid of the cancer so we shouldn't mind a little heart disease.

But I digress. The heart damage shows up five years after treatment and the risk continues for  more than twenty years.

Clearly in the category of what doesn't kill us makes us stronger.

Semi retirement

I have decided my life has entered a phase of semi-retirement. Now this may change in the future if my RA will get under control and my fibro decides to go away or some other miracle occurs. This means I have cut back on many things that I do.

I no longer mind playing the wimp. I need to take my husband's computer to the repair shop because he got an evil virus which tells him the FBI wants him and they really don't (or at least not that we know). My husband will put the computer in the car this morning. I will drive over and double park out front and go in and tell them I need assistance getting it out of the car - waving my arm with my wrist splint on it. I used to suck it up and try to carrying things I probably shouldn't.

I have become a firm believer in PJs at 5pm. And if my husband can be 'persuaded' to cook dinner while I can be lazy.

I am no longer a supporter of the 35-40 hour work week. I support the 18 hour work week plus a few hours if I am able.

I no longer believe evenings are good for social events and activities. Weekends are just fine. I can't get in my PJs at 5 if I have to go out later.

Why am I semi-retiring? Because I need my nap time. Today I am being lazy. I have a dr apt at 945 and them am getting my nails done at 11. I also have to drop off the computer, go to the book store, and have a webinar from home, but that is plenty for today. I am exhausted this morning and I slept well  last night.

We had dinner guests Saturday night (take out Chinese) and a pot luck brunch on Sunday. Monday I worked for my requisite 6 hours and met a friend for a walk. Yesterday I worked my 6 hours and went to the gym for probably 75% of my work out. Then I ran an hour meeting. I got home and needed to go to bed. I was wiped out.

My goal by the end of today is that I am recovered and revived but it will take a lot of quiet time.

My long term goal is to get my RA under control and my fibro managed so I can resume having a social life. But for that I will have to be the patient patient.

Those sneaky hospital costs

A new hot button issue in the world of medical treatment are the sneak hospital costs. Hospitals and insurance companies have negotiated these rates and traditionally they have been covered by insurers. But as patients switch to higher deductible policies they are bearing the brunt of these costs.

On the hospitals side, they claim they warn patients by putting signs up through the facilities where these are charged so patients are warned. But they are not told the amounts until they receive the bill. They also say these fees pay for things like twenty four hour ER stays, research, and teaching.

Medicare allows doctors to charge overhead fees for work performed in buildings owned by hospitals. So I guess this is automatically done for us non Medicare patients.

On their side, insurance companies do negotiate with the hospitals but say they can't change the way hospitals bill. (Sounds like someone might be trying to pass the buck here.)

I can understand hospitals have costs that are not included in the fee to pay to see the doctor. They are in big buildings and they provide additional services than just doctor visits. They are also trying to cover their research costs, etc. While hospitals are there to treat patients who pay the fees to get care, you can't tell me they do not get grants to pay for research which should cover the research costs?

If we get to research costs again, aren't patients also paying for the research costs for the pharma companies by receiving really expensive brand name drugs as well?

I think that this is clearly another issue that shows how badly our healthcare system is messed up and how much more change is needed.

 

This is an ad for a CNN Special called "Escape Fire: the Fight to Rescue American Healthcare" which premiered last night (after my bedtime so I recorded DVRed it and will watch in the next few days).

It was included with this article titled US Manages Disease, Not Health which states that though Obama care represents change and has the goal of helping more Americans get health insurance and access to health care. But tjhat is the wrong question to answer.

They claim the real question that healthcare reform needs to answer is: "How can we improve medical care so that it's worth extending it to more people? In other words, how can we create a health care system that helps people become and stay healthy?"

Personally I would like to believe that both questions should be answered. We need everyone to have access to health insurance and health care and we need a better medical system that helps people become and stay healthy.

As this article claims more focus needs to be on prevention and keeping people healthy where treatments are less expensive and less arduous. We do need to focus on healthier life styles. More exercise - go for a walk instead of watching tv. Provide better food - meaning less processed food, fewer ingredients.

I have seen changes which help make Americans healthier by offering free annual physicals as a preventative measure. There has also been a movement coupled with the recent recession where people are eating healthier, farmers markets are showing up everywhere, and there has been public awareness of the dangers of obesity.

But we have a long way to go. We need health care reform, we need to focus on keeping people healthy, and we need financial reform in the way doctors, medical centers, and insurance companies pay and charge fees.
 

Why go to a cancer center?

So why go to a cancer center for your treatment? Why is it so important? Do you want someone to treat you who treats one case pf breast cancer a month or someone who treats dozens of cases each month?

There can be little bitty differences in tests, biopsies, side effects and a lot of other things that may not be significant to a doctor who sees them as being in the normal range but to a specialist as a group they may provide an indicator of something else.

This video actually does a really good job of explaining the importance of going to a specialist and a cancer center.

It is also true of going to specialists for a lot of different medical issues. It might even justify all the specialists I see - medical oncologist, radiation oncologist, breast surgeon, endocrinologist, rhematologist - that I see regularly in addition to my primary care and my therapists.

A doctor question.

Here is an interesting question. A woman wants additional treatment for her husband who is failing rapidly from cancer. She thinks there must be something more that can be done. But the doctor knows there isn't really anything left to prolong his life.

I am sure oncologists and other doctors are put into this position by well meaning family members countless times. There is a point where the treatment of the patient extends to the family members, especially the primary caregivers. They do not want to lose their loved one and are grasping at straws for anything to save their life.  

The article I liked to is from the physician's point of view - what should they do? Where do they draw the line? How do they keep the patient as comfortable as possible and keep the family members happy?

It is a tough question. I would not have to be the one to have to answer this. I can also see me being the one grasping at straws and asking the doctor isn't there something else to try?

I never understood this

Clearly its pinkification but I do not understand the commercials for the breast cancer walks. The one where the woman is saying "Three days of walking to give a breast cancer patient a lifetime". What? I mean there is a significant disconnect here. This commercial just ran and it irritates me to no end every time I hear that woman saying the same thing.

Someone walking for days does nothing for me. How does the walk or anyone's walking give a breast cancer patient a lifetime? Its not the walk that Komen or Avon or who ever is holding it cares about, its the money they raise.

They require the walkers to raise anywhere between $1000 - $3000 or more each and require them to provide a credit card number that they can charge the amount not raised. They pressure these walkers, or runners,  or riders or whatever to raise the money. How does that pressure help any cancer patient?

No help to me. My sister and a friend did the breast cancer walk a few years ago. I have friends that do the walks annually and enjoy the participation and the giving back to the community. More power to them. It can be a worthy effort but you can't tell me that walking/running/riding gives a cancer patient anything.

The effort results in funds raised for awareness (as if we need more pink) and research (we hope).

Big words to be translated

I find inspiration for blog posts everywhere. I keep open tabs  in my browser holding stories for me to write about. Sometimes I get a little backlog - like right now. I have a backlog and the problem or the source of the back log is ... drum roll.... big words. I don't feel like deciphering them and figuring out if they have content to be worthy of a blog post.

I have a Business wire story on the the first test to diagnose fibromyalgia:

• "First Test to Objectively Diagnose Fibromyalgia Now Available - New Peer-Reviewed Research Identifies Diagnostic Biomarkers for Fibromyalgia SANTA MONICA, Calif.--(BUSINESS WIRE)--A recent peer-reviewed study, published in BMC Clinical Pathology,^[1] reveals a medical breakthrough discovering multiple biomarkers based upon highly sensitive and reproducible medical investigations. Conducted by the University of Illinois College of Medicine at Chicago (UIC) and EpicGenetics, a privately-held biomedical company, the research has led to the development of The FM/a^® Test (www.thefmtest.com), the first test to objectively diagnose fibromyalgia."
  

The important thing here is that there never has been a real test. But look at those big words!

• 'Drug holidays' beat cancer drug resistance in mice -
  Introducing medication-free spells to some cancer treatments may keep patients alive for longer, studies in mice with skin cancer suggest.
  The animals had melanoma, which can rapidly become resistant to treatments.
  However, a study in the journal Nature showed tumours also became dependent on the drug to survive. Withdrawing treatment caused tumours to shrink.

I would be happy to have a drug holiday every once in a while. I mean am I building up a resistance to some of the medications I am on? Or do the days count when I just forget my pills (oops)? And then the article goes on with lots of big words!

• Skin cancer 'able to fight off body's immune system'
  A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.
  Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.
  Potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.
  Cancer Research UK said the body's response was a "complex puzzle".

So they discover treatment and then they find out it doesn't work for everyone.  Great. More research is needed, don't you think?

• Key Enzyme Missing from Triple-negative breast cancer
  Key Enzyme Missing from Aggressive Form of Breast Cancer, Groundbreaking Study Shows
  Feb. 28, 2013 — A groundbreaking new study led by the University of Kentucky Markey Cancer Center's Dr. Peter Zhou found that triple-negative breast cancer cells are missing a key enzyme that other cancer cells contain -- providing insight into potential therapeutic targets to treat the aggressive cancer. Zhou's study is unique in that his lab is the only one in the country to specifically study the metabolic process of triple-negative breast cancer cells.
  Normally, all cells -- including cancerous cells -- use glucose to initiate the process of making Adenosine-5'-triphosphate (ATP) for fuel to carry out essential functions. This process, called glycolysis, leads to other processes that use oxygen to make higher quantities of ATP -- but solid tumor cells, which have little access to oxygen, are forced to rely almost exclusively on aerobic glycolysis for survival.

 The next paragraph is a little deep:

• Zhou's study, published in Cancer Cell, showed that the powerful transcription factor complex Snail-G9a-Dnmt1 is over-expressed in triple-negative breast cancer, inhibiting the enzyme 1,6-bisphosphate (FBP1). The loss of this enzyme shuts down the glucose anabolic pathway and promotes the glucose catabolic pathway, leading to a large amount of glucose entering the tumor cells and thus "feeding" the aggressive cancer. This metabolic switch empowers the triple-negative breast cancer cells to suck more glucose from the body, increasing macromolecule biosynthesis in tumor cells and maintaining ATP production despite a dearth of nutrients and an oxygen-free environment.

Way too many big words! But behind it is some very interesting news.

• Early rheumatoid arthritis and resolving fibroblasts segregate according to Dickkopf related protein 1 expression
  Dickkopf related protein 1 (DKK1) has been proposed as the master regulator of joint remodelling. This Wnt signalling pathway inhibitor is involved in osteoblast growth and differentiation. In rheumatoid arthritis, increased DKK1 plasma levels correlate with inflammation and bone erosions. Furthermore, patients with rheumatoid arthritis who carry genetic variants in the DKK1 gene have higher serum DKK1 levels and more progressive joint destruction, suggesting a fundamental role for DKK1 in rheumatoid arthritis. In the diseased joint, synovial fibroblasts are key mediators of bone and cartilage destruction via secretion of matrix metalloproteinases and regulation of monocyte to osteoclast differentiation. In this study we analysed whether DKK1 secretion might contribute to this effect. We hypothesised that synovial fibroblasts from patients with early rheumatoid arthritis would be characterised by high DKK1 expression compared with those from patients with resolving arthritis.

Too many big words but lots of great news here. I am leaving these articles to you, the readers, to decipher as I am taking a break from big words these days. Chemobrain/fibrofog or just plain pain and fatigue are allowing me to do this. And just plain old lack of inspiration.

Well they scared the crap out of us

When women are diagnosed with breast cancer, they are brainwashed scared into thinking that they will get lymphedema and  end up with an arm the size of an elephants. If they have an axillary node dissection where a dozen or more lymph nodes are removed in the hunt for evil cancer cooties, they are given a list of rules for the rest of their life:

• do these stupid wall climbing exercises to make sure your arm doesn't swell up
• never allow anyone to take your blood pressure or stick any needles in that arm 
• never carry a shoulder bag or any bag on that arm that might compromise your circulation
• never lift anything heavy
• never injure your arm or fall on it.
• at any signs of swelling, contact your doctor.

And these are for the rest of your life.

Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us.  I even had a special session with a nurse to review everything about lymphedema. 

I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
 
So maybe they scared me, but they were right. Crap.

Its about time

Finally, they have done enough research (because the researchers always need to be sure and there are plenty of them out there) to say that there is no connection between breast cancer and thyroid cancer.

For years there have been questions on this. Basically women are more likely to get both. Breast cancer is the most common woman's cancer (I think) and thyroid cancer is most common in young women and growing in incidence. Both are hormone (endocrine) related cancers so I guess it seemed they were connected.

Standard procedure has been for women with both to be tested for Cowden's syndrome which is a genetic condition that has both cancers are indicators. I was tested and I do not have it.

So basically this tells us that all medical research can be proven wrong over time. Can you name one thing that 'they' have not told us was good for us and now is bad or was bad for us and now is good? Which is why everything always needs more research.

Being decisive

I woke up this morning and think (so far) I am in a decisive mood. This doesn't always happen. I can waffle with the best of them. I have been doing a lot of that recently - waffling (but not eating waffles). I have been juggling some decisions recently and think I have finally decided its time to make up my mind.

Some decisions are not that big - changing our home owners insurance policy for example. Our old insurance company is just a pain in the neck to deal with so a change is needed.

Other ones will require some work - I really am going to lose weight - and won't happen overnight. I caught a glimpse of my flabby stomach this weekend and decided it really needs to go away. My problem is that there is limit to how much activity I can do before I have to take it easy for a few days to recover.

Still more decisions will require some confrontation - which I really detest - but in this case its needed. I am not ready to talk about that one yet, maybe I will later.

Unappreciation is taking its toll on me and I have to put an end to it. Its one thing to work as a team but another thing when the communication evaporates with no explanation. It makes one feel unwanted. When its chronic, it needs to end. I don't want anyone to think I'm leaving my husband or something because I'm not. He's stuck with me. Its a different issue completely.

I'm also going to clean the car and pick up the living room. Our downstairs bathroom is a construction zone again. The mess generated by construction gives me urges to clean other things up so there is one area I can be proactive. I can accomplish a lot in 30 minutes of dedicated cleaning. Besides cleaning will make me stop thinking about confrontation, and ailments, and flabbiness. But I can still be decisive.

After rereading this post, I decided I am being vague inmy decisiveness but that is what you get today.

PTSD and cancer diagnoses

I honestly do not believe they needed a study for this one but did so now they can say its true. A recent study examined women diagnosed with breast cancer from 2006-2010 and found that 23% reported PTSD symptoms shortly after diagnosis. This rate was higher for Black, Asian  or under 50 women and apparently the symptoms decline over time.

My comments (because I had to have an opinion) are that:

• I do not think it is isolated to breast cancer patients. I think its probably across all cancer diagnoses and they just have not done a study yet to prove it.
• I think the people who say they did not have PTSD were still stressed. A cancer diagnosis is not something you can bury inside you and not react. 
• Although the symptoms may fade over time, the person with the diagnosis has to learn to cope with the ongoing fears of cancer's return for life.

Ask anyone who has had a cancer diagnosis and talk to them about the stress of diagnosis and fear of recurrence or new diagnosis, and they can tell you without the need for a study. 

I am offended

After thinking about it, I have decided I am offended. Every morning the paper is delivered (yes we read the printed newspaper) and we fight over the comics. Usually I start with the front page and then once my husband has read the comics, he passes them to me.

We both read them regularly and are convinced there is an 'Arlo and Janice' camera in our house documenting our lives which are drawn into the cartoon. We usually snicker about different ones and tell each other which ones are particularly good.

Today I was disappointed by the Bizzarro cartoon. Of course I can't find it online to link here.

Essentially it is a one eyed woman in a bra store, being told that they only sell two cup bras there. I can see the humor in a cartoon woman with one eye and then one of everything else. But from a breast cancer point of view, I can feel the offense. Many women who had mastectomies and did not opt for reconstruction would be happy with a single cup bra.

I guess I think its insensitive and I choose to be offended.

The backstory

We have all see this video that went viral about six months ago. At the hematology clinic in a Seattle hospital, they rocked it out to Kelly Clarkson's "Stronger". There are all sorts of videos that go viral. But we usually never really know why they were made, who made them, or anything else. They are just a video we share and laugh at or with.

 

But this time I found out the backstory to this one. A hockey playing college student spent six months in chemo and helped make the first video.

I think knowing his story gives even more power to the video. We know the context that he was a patient as well and worked with the children in the hospital with him to make the video. There are some real smiles there. My favorite is the little boy with the missing front teeth.