Life with the damn cat

Today he is the damn cat. Last night he woke me up throwing up next to the bed. This morning he was annoying enough to get me out of bed - I thought he wanted breakfast. No, he wanted to go outside and eat grass so he wouldn't throw up inside. I didn't understand. He threw up inside. Then I let him out and he ate grass.

He is an indoor cat and he has a plant pot that is growing grass for him on the window sill. But grass is better on the outside. However he can be very determined.

He is also approaching the ripe old age of 19. He can't hear - we can tell because he is no longer capable of walking quietly. Nor can he tell how loudly he meows at us. He can't see. We can tell this because I can wave my arms at him across the room and he can't find me. He can't really smell. We can tell this because he can't find food unless it is right under his nose.

He also has swollen ankles on his back legs where it looks like some kind of arthritis but it doesn't seem to bother him much. His coordination is bad - we can watch him slide off the edge of the coffee table, miss the edge of the sofa when he tries to get up on it, and all sorts of other things that impair his dignity.

He was REALLY mad at us when we left him on vacation. He had a live in baby sitter who fed him and took care of him. He stopped eating for a few days and left a few presents around the house.

But he is very cuddly. Its now fall. I can tell because he sleeps next to me  and I appreciate it now. When it was hot out, I didn't appreciate it as much.

He was also my chemo buddy and whenever I am not feeling well, he follows me around to take care of me with his snuggles.

That is life with the damn cat. It definitely has its ups and downs.

About that risk assessment

There is all this talk these days about what you can do to reduce your risk of cancer, dementia, chicken pox, or the common cold, among a million other things. You know all the advice - eat broccoli, exercise, don't drink, lose weight, exercise, eat margarine no eat butter, drink red wine no white - and all it does is confuse the crap out of us.

Then they start to give people personal risk assessment for an ailment and expect us to believe them. How much conflicting medical advice do you hear on a given day? A lot. Eat red meat and chocolate, no don't, yes, well a little, and the famous words - in moderation. How can you be expected to believe anything?

When you are told what your risk of some thing is - whether being diagnosed with cancer or being hit by lightening, don't you always harbor that little thought in the corner of  your brain that of course they are only talking about other people and not you or anyone you care about. Its always going to affect those other faceless people you don't know.

So why all the surprise when a new study shows that one in five women don't believe their breast cancer risk? I can honestly tell you I was very surprised by both my cancer diagnoses. I thought my back pain was the result of muscle strain and not the permanent debilitating state of the disks in my spine. I thought my aches and pains that turned out to be rheumatoid and fibromyalgia were just normal aging.

Sometimes I think, they were all wrong and I am really a healthy person who can live the way I used to - working full time, having a social life, and going off on adventures regularly that involve beaches, mountains, and the great outdoors.

Seriously, we hear so much conflicting medical advice and then if someone gives us a risk assessment, we are supposed to believe them? I think a risk assessment is like listening to the weather forecast - there is a good chance Saturday will be rainy and it should clear out for Sunday but watch out for a hurricane next week. How do they really know?

Not a profound thought in my head

Some days I actually write a profound blog post that is coherent and other people read and share. Today is not one of those days. My brain is full and I haven't even left for work yet and here is why:

Weather: Tonight's low is going to be down around 50 - this means I need to start bringing in some plants from outside - particularly my Ponderosa lemon and my Key lime plant. They are just starting to produce fruit and I want to be able to enjoy them. But they are tropical plants and aren't supposed to be out in temperatures anywhere in the 50s. There are even some frost/freeze warnings near by.

Its New England and the summer was unplugged last weekend - it was Labor Day. Time to think about snow shoveling, raking leaves, and (brace yourself) winter. Never mind that summer doesn't really start around here until mid-June.

Flabbiness: While I didn't gain or lose weight on vacation, I came back with a vow to stop snacking at work (where there are always snacks). That lasted about two hours. I have to reinforce my will power or I will never lose weight.

Birthdays: What the hell to buy for my husband for his birthday next week? I have some ideas but he is difficult to buy for to say the least. And what to do to celebrate his birthday. Damn. I'll have to figure this one out.

Work: I'm buried. I was out for two weeks and my in box filled up as my brain emptied out while I was away. And I am getting no sympathy because I am taking another week off at the end of the month.

Crafting: My knitting is burying the house. I need to start finding places to sell it all. But first I need to finish projects, block them, and label them all. Crap.

And I have four more weeks until another doctor appointment.... (insert tiny cheer here)

See nothing profound here today. I'll try to be more profound by tomorrow but don't hold your breath.

Privacy and support

With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.

I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with  her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.

Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.

My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.

My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations

When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.

Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.

The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping -  have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so.  And if there are repeated requests over and over the patient's stress mounts at an already stressful time.

A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.

What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

Insurance wars and woes

This morning's news includes a story on a gentleman with stage IV esophageal cancer who is disputing with his insurance company to cover the costs of his treatment. He is treated at Dana Farber and is pursuing alternative treatments. I am fully supportive of efforts to prevent insurance companies from making medical decisions.

Also, I am a big fan of preventing bloated insurance costs where people expect everything to be covered and then can't understand why their premiums keep going up in leaps and bounds. There has to be a happy medium while is why insurance companies need to be allowed to draw the line somewhere.

As you are aware, I do not believe insurance companies are capable of making individual medical decisions. They may employ their own oncologists and other doctors to review decisions. But unless the doctors have met with the patient and examined them, they have no idea what they are doing. At the very least the patient's doctors recommendations should be the guidelines followed. Not someone who is reading an actuarial guide and cost/benefit analysis. That is no way to make a decision that might permanently affect some one else's life.

However, and this is a big fat HOWEVER, if the treatment has not been shown to have any proven results I do not believe the insurance providers should be required to cover it.

There are all sorts of quackery theories on curing cancer and myths about treating and curing cancer. There are also many alternative treatments that are not necessarily covered by insurance but have proven to be beneficial to cancer and other patients. This would include things like acupuncture.

The problem with this gentleman's request is that he is asking for coverage for something called Insulin Potential Therapy or IPT. I googled it and the first two results were from Quackwatch.org and from the American Cancer Society showing that their was no real proof it works.

While I understand he is fighting for his life, I am actually on the side of the insurance company here. The treatment he wants has not been shown to be effective. He has a full medical team available to him where he is being treated. While he may be feeling better currently, there is no way to tell if it can be attributed to the IPT or some other reason.

An annual pledge against pinkification

As we approach the month of Pinktober (with 30 days advance notice), it is time for all of us to raise our hands and pledge the following. Please join in.

Raise your right hand and repeat after me:

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

We need to focus our efforts on research and screening services for under served populations. We do not need any more awareness. The American public is plenty aware of breast cancer at this point.

Between now and then September is Prostate Cancer, Childhood Cancer, Thyroid Cancer, Leukemia and Lymphoma, and Ovarian Cancer month. It also contains the Jewish holy days of Rosh Hashana and Yom Kippur. Those all seem to be overshadowed by the looming Pinkification of October.

In October, there are other lovely holidays to support. Halloween for one - the one where we dress in costume and eat lots of candy, never mind Columbus Day and a host of other minor celebrations.

November includes many events including Veterans Day and Thanksgiving but it in recent years the squabbling that has resulted from Pinktober overwhelms everything until Thanksgiving. It also includes the great American Smokeout, Lung Cancer Awarness and Pancreatic Cancer awareness month.

What I am trying to say is stop supporting on pinkification and focus on research and screening for underserved populations.