Friday, November 17, 2017

Maybe I'm Lying To Myself

I can't tell you how many times I say things like 'I'm fine', 'I didn't sleep well last night', or other creative lies about how I am doing, physically and mentally. Sometimes these are lies, to myself and to those who I am speaking.

Over at The Mighty, which is an awesome website for people with health issues. I only found it recently but immediately signed up for their emails. (That says something in itself because I think I spend more time unsubscribing from email lists than anything else these days.)They say:

"The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities."

I think that criteria might include me. Today's email talked about how people dealing with depression or other mental health challenges by hiding behind some statements about how they really feel. And what they are hiding is that they need help. I do admit to dealing with depression and anxiety. But with my health issues, who wouldn't be depressed and anxious?

So I disagree with their statement that these only apply to those with mental issues but with physical ones as well. I use them all the time. I could add a few such as 'another day not pushing up the daisies'.... Their statements are:
1. “I’m not feeling well.”
2. “Well, I’m alive!”
3. “I didn’t sleep well last night.”
4. “Eh, you know.”
5. “It’s too much.”
6. “I’m exhausted.”
7. “I’m just out of it today.”
8. “I’m fine.”
9. “I’m bored.”
10. “I’m having an ‘off day.’”
11. “I’m hanging in there.”
12. “I’ve been listening to music a lot today.”
13. “I don’t want to be alone.”
14. “I’m all good, don’t worry about it.”
15. “I just can’t today.”


But go read the full article here. And subscribe to The Mighty if you think it might help you too.

Thursday, November 16, 2017

Just Because We Can, Doesn't Mean We Should, And Who Pays For It

Back when I was first diagnosed with breast cancer, I first learned about the OncotypeDx genomic test for women with breast cancer. Of course I was not eligible for it. I can't remember why - whether it was because it wasn't my first cancer, or I had a single tiny positive node.

I am never eligible for anything because my health is too complicated to be eligible for anything. I have way too many ailments, previous or current treatments, or something. But I digress.

I watched all these other women get the tests to find out their risk of recurrence. Over the years, genomic testing has expanded from the OncotypeDx test to include a group of available tests. Which I was never eligible for....

These tests can provide helpful information. However, would everyone diagnosed with breast cancer benefit from these tests? Would the benefit of these tests outweigh the costs of them? Insurance companies never want to pay for more testing, even when it might show that a patient can have less treatment in the long run. And we cannot forget the additional stress on the patient for more testing.

A group of oncologists met at the Chemotherapy Foundation Symposium and had a moderated discussion about which breast cancer patients should have genomic test. The result of this discussion was:

"...that not every patient needs to undergo genomic testing.

He gave an example of how, traditionally, older women unfit for chemotherapy do not undergo genetic tests. “I think that this can really apply to any age, 3 cm or below, node-negative disease,” he said. Additionally, low-risk patients — possibly 20% to 30% of patients — most likely do not need to be tested, according to Brufsky.

“You really have to choose,” he said. “I think the payer’s like that, the patient’s like that, and I think we’re a little hesitant sometimes to say to [our patients], ‘Listen, you have a tumor that’s just going to do great, no matter what we do, and you don’t need to be genomically tested.’”"

Just because we can offer these tests, doesn't mean we should test every patient. Even without pushback from insurance companies on costs, more testing is never always beneficial for patients. Or for their emotions and wallets.

Wednesday, November 15, 2017

On Not Blogging About Breast Cancer

You might have noticed that I haven't been blogging about breast cancer recently. Why? Because my brain has been filled with non-breast cancer issues that take up the entire health section of it.

My brain is full of knee, RA, fibromyalgia, and other health issues. Like why can't I stop taking a couple of medications (a couple of serious conversations are upcoming)? Or why can't my hands and feet hurt less even though I am taking all these meds to make them stop hurting? Or when will my knee be all better and get back to normal? And why did I manage to get so tired yesterday when all I did was go to a yarn store (and spend too much money)?

Anyway, breast cancer doesn't fit in anywhere. I am happy that it doesn't fit.

I think its a sign that I am moving on in some ways in my life. This is a good thing. Breast cancer will never go away in my brain, as thyroid cancer, never does. Cancer never goes away.

But breast cancer will be happy to fill my brain up again at the next little twinge. [Wait, is that a lump I feel?]

I'm just going to focus on my knee for now.

Monday, November 13, 2017

Being Busy

I have not blogged for a couple of days because I have been busy. It was wonderful to be busy.

I have spent so much time by myself over the last six weeks. I have kept myself busy and on some levels, very productive. The only people I have seen with any frequency, other than my husband, are the physical therapists when I go to PT twice a week. I have been starved for the sight of other people. I needed face to face interactions.

Normally I spend a lot of time on my own which I don't mind. But over the course of a week, I would go to the gym three times, go to the grocery store, the library, my parents house, and see a friend or two. But I had six weeks of nothing. A friend drove me to the doctor, my sister and my cousin took me to PT once. I took a cab to PT. I could only go to the grocery or library when my husband was off work.

But this past weekend I had two craft shows. They were really busy. I probably did too much walking and standing on my knee (never mind my back and all the rest of my body which hates me today). But I talked to dozens of people each day. I interacted with the public. And it was wonderful.

I know I will be paying the price for the rest of the week and need lots of rest (and ice packs and heating pads). However my mood is greatly improved. I needed interactions with the outside

Living the life of an isolated unhealthy person, if it is compounded by a period of enforced isolation, can be very stressful. All of a sudden you are encircled by a wall of limitations and restrictions.

So this week I will spend a fair amount of time recovering from two days in the outside world. But I will take myself places - PT, lunch with a friend, the grocery store, library - all on my schedule. I am back into my world where I can pace myself as I want.

Friday, November 10, 2017

Driving Again!

This is a big day. I drove home from breakfast today. It was a whole three miles but my knee felt fine. And I am going to drive myself to my doctor appointments today so my husband doesn't have to. However, he will be drive me this weekend to craft shows because they are longer distances.

All this means, I am just as restricted as I always have been. I will be coming home to lie down regularly.

But I can go to my PT and doctor appointments without hunting for a ride or paying for a cab. And maybe I can get my hair cut next week.

No gym until mid December either. Wah! But this is a start. I am returning to my normal life....

Thursday, November 9, 2017

Taking The Good With The Bad

Sometimes, or maybe most of the time, I never get good medical news. I swear, my doctors go off script all too often. So yesterday I got some good news and some bad news.

First the knee doctor said I can start driving. But I need to take it easy. I need to be able to slam on the brakes with my restructured knee. Apparently the surgery did some restructuring but I am not a doctor so I don't really understand it. (All I know is I have lots of knee exercises.) First before driving, I have to practice driving in a big parking lot (like when I first learned to drive) or in our quiet neighborhood to see how it feels. And start driving slowly, not just not getting speeding tickets, but take it easy and work up to driving long distances. My husband was with me so he heard it all and will keep me restricted (maybe I should have left him in the waiting room).

In addition, I don't have to wear the awful, uncomfortable brace any more. I have graduated to the little soft brace which has little metal hinges and gives support. But I still need to be careful with my knee. I can't stand on it for long periods of time. I can't bend it more than 90 degrees, except in PT.

I can't go back to the gym until mid to late December. I should continue PT for at least the end of the year. And I need to go back to the doctor in two months.

After getting all that wonderful news at the doctor's office, we headed down to the blood lab. When we checked in they told us there was a 40 minute wait. But by some miracle we only waited 20 minutes. Today I have a nasty bruise from where they took blood - that happens sometimes.

This morning I got my blood test results. I know I am going to get calls from two doctors because some of them are way different than before. This means medication changes and doctor appointments.... Oh, joy. (No, nothing major but its just concerning when they change too much.)

So it was a good and bad day. But we went to the grocery store so we now have food to eat. I'll just wait to hear from my doctors.

Wednesday, November 8, 2017

Today Is The Big Day

I have been waiting for this day for nearly five weeks. This is the day I go see my surgeon for a follow up. I have my fingers crossed that all is well and I am given the green light.... to drive that is.

I have not been able to drive since October 5, the date of my surgery. Originally I expected that my surgery would be a minor arthroscopic clean up of my knee and I would be all healed by now. But now, during surgery they found what they really needed to do was to repair my meniscus so I don't lose any more stability in my right knee (I need all the stability I can get as my left knee has a torn ACL and likes to give way sometimes).

So they did the right thing (and I don't regret this at all) and repaired my knee. When I woke up they told me its four to five months until I am healed. At my first follow up, ten days after surgery, I asked if I could drive and was told not yet.

Today is my five week (minus one day) follow up and I have had three weeks of PT so far, so I hope this is the big day and I am allowed to drive.

If I am not given the green light to drive, I will probably cry. If not in the doctor's office but later on. Its so restrictive and depressing to be stuck at home. Walter, my husband, works all day. I have been begging drives off people, taking cabs, etc.

But I have over due library books, I can't go to the grocery store, I can't get together with friends. I am at home all day from 7am to 5pm, five days a week. To top it off, I have had a cold since last Thursday. Today I am finally feeling normal, after 14 hours of sleep. And I have been eating too much left over Halloween candy.

Its not that I want to go out all day, every day. I just want to get out of the house and see other people. Its I just want my life back. I wouldn't mind going to the gym but I am sure that's another few weeks.

So cross your fingers for me. Or send me kleenex.

Monday, November 6, 2017

One Last Story on How Life Sucks After Breast Cancer

Okay, maybe I have been in a rut because I have been stuck at home after knee surgery because I can't drive. Or maybe because I have a cold that I am obsessing on crappy lives after cancer. Or maybe the internet gods had their stars align and all these stories ended up on my laptop in the same time period. But I hope this will be the last one for a while.

Here's the story of a young woman who lost both her husband and her sister because of her lengthy cancer treatment.

"“The reality is that probably four out of seven days I’m in bed,” explains the 39-year-old, who lives with her mother at Bundall.

“I’ve had my left hip replaced. My right hip is headed the same way. The pain is excruciating and I’m on some heavy duty pain relief. My lungs have been affected. I had my gall bladder removed last year. I’ve developed cataracts."

Kate Carlyle is a former radio personality from Brisbane Australia. In the past eight years she has gone through two breast cancer diagnoses and a leukemia diagnosis which required a bone marrow transplant. The bone marrow transplant is what cost her a sister - her sister could donate but became pregnant and couldn't donate at the last minute - causing a long term rift which continues today. She was saved by an anonymous European donor.

The stress of her cancer roller coaster cost her her husband. She is not the first to lose a spouse over the stress of cancer diagnosis. But it just makes things suckier. During cancer treatment is you are not at your best to deal with marital issues.

So yes, life after cancer can be very sucky. They don't tell you all this. Yes you can get divorced or have a long term rift with a sibling without involving cancer treatment. But when you are coping with a significant health issue you don't need the other crap.

So as Kate says in the end: "“I love being alive and if that means I have to battle through at times, so be it.”"

Being alive is the most important thing. It is the goal of any cancer treatment - to still be here for all the little things in life - birthdays, anniversaries, marriages, friends, family, change of seasons, butterflies,...

Sunday, November 5, 2017

More on Life After Breast Cancer

Beth Caldwell is another story about life after breast cancer. But the really sad kind. She was diagnosed with breast cancer at age 37, which is three years before she would have gotten a mammogram. Unfortunately she had a huge factor going against her with her diagnosis. She was diagnosed at stage IV.

This is a very bad thing. This is not the good painted pink breast cancer. This is the really bad kind. This is the cancer that something like 7% (or so, I can't remember the exact number) diagnosis that women (and men) face.

When you are diagnosed at stage IV, you are already past the point where everyone else is at and where everyone else is trying not to get to. Their treatment is trying to keep them from getting to Stage IV. Beth didn't have that luck.

Now Beth is gone. She passed away on All Souls Day, November 2, 2017, 3.5 years after diagnosis. That is a very short time. If I can do math, she was just over 40 years old. She left a husband and two children.

Before her diagnosis she was an attorney. She left her work and became a mom and a cancer patient. That's a sucky life. The cancer patient part. Not the mom part.

I don't claim to know Beth. I have read her blog a few times.... but not every update, but most of them. But I feel for her. I can relate.

So there can be millions of women with pink boas walking and running their events who say they are lucky to be 'survivors'. But the sad side of breast cancer is people like Beth. She didn't make it more than a few years.

You ask how breast cancer sucks? This is the ultimate suck. I hate breast cancer.

Friday, November 3, 2017

Breast Cancer Changed Me Too

I like Joan Lunden. I mean I like what I saw of her on TV. She was very professional and did a good job on the air. I am not sure I would have 'volunteered' to have a mammogram on television, even if it was to raise awareness of breast cancer screening.

Now, three years after her diagnosis, she is through with treatment and says that having breast cancer changed her. She has started a website to educate women about the benefits of early detection.

Then another woman, much younger, Yolanda Jenkins, has also been diagnosed with breast cancer. She has created a platform to encourage young women to get checked and wants to get the age for mammograms lowered so younger women have access to this critical tool.

These two women make me think should I be doing something different? I mean I have a blog that's about me. I don't run around educating people about cancer. I know I talk about breast cancer and other cancers but I don't educate or advocate or anything... Should I be doing something different? I am not sure I could.

Thursday, November 2, 2017

Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Wednesday, November 1, 2017

Blatant Discrimination

I recently learned some surprising discrimination. A local committee part of the NHS in the UK has decided to institute what I call blatant discrimination.

"...one local health committee in the UK has announced a controversial policy "to support patients whose health is at risk from smoking or being very overweight."
For an indefinite amount of time, it plans to ban access to routine, or non-urgent, surgery under the National Health Service until patients "improve their health," the policy states, claiming that "exceptional clinical circumstances (will) be taken into account on a case-by-case basis."

The decision comes from the clinical commissioning group (known as a CCG) for the county of Hertfordshire, which has population of more than 1.1. million.
The time frame for improving health is set at nine months for the obese in particular; those with a body mass index over 40 must reduce the number by 15% over that time period, and those with a BMI over 30 are given a target of 10%.

The target for smokers is eight weeks or more without a cigarette -- with a breath test to prove it."

I could not believe this. Some 'holier than thou' sorts have clearly decided that they are better than those evil people who are overweight or smoke.

Look I was a smoker for far too many years to count. Its not an easy habit to quit. Smoking has been called more difficult to quit than heroin. It takes many people months or years and many tries to quit. Eight weeks to quit is a very tight deadline. And a breath test? Seriously? Like a breathalyzer?

I find the obesity one even more offensive. Is it my fault that I have managed to gain multiple pounds (so many that I find appalling) over the past twelve years? Is it because I have so many ailments? Is it because I am on so many medications with the side effect of 'may cause weight gain'? Is it because I like to make a nice dinner for my husband every night? 

Can I lose weight? With great difficulty. If I wasn't recovering from knee surgery I would regularly exercise. But that wasn't making me much thinner. Its very difficult for me to lose weight. And I am not the only person who has problems losing weight. There are many people with medical problems, metabolism issues, and more that would have to eat only lettuce leaves to lose weight. Some people just have a predisposition to being heavy.

Finally, the BMI is not a perfect measurement. There are many who disagree with it.

I cannot believe in this day and age, people in medical professions would blatantly discriminate against people who are fighting hard issues - quitting smoking or losing weight. And then denying them medical care based on these same issues. Well, at least I am not the only person who finds these policies horrible:

"The new policies came under immediate attack from experts and interest groups.

"Singling out patients in this way goes against the principles of the NHS," said Ian Eardley, senior vice president at the Royal College of Surgeons in the UK. "This goes against clinical guidance and leaves patients waiting long periods of time in pain and discomfort. It can even lead to worse outcomes following surgery in some cases."

The conversation has been going for some time, experts agree, but the question is the ethics -- and whether it would even work.
"Rationing treatment on the basis of unhealthy behaviors betrays an extraordinary naivety about what drives those behaviors," Robert West, professor of health psychology at the UCL Research Department of Epidemiology and Public Health, wrote in an email."

I am not alone but these are just blatant discrimination.

Tuesday, October 31, 2017

Happy Halloween!

Today is Halloween. But we will not have trick or treaters until Friday night. Significant portions of the town do not have power and there are still trees downed all over the place.

We had a little storm on Sunday night with wind gusts here to around 50 mph but other places on the coast in the 80-90 mph. A little hurricane came up the east coast and joined up with another front moving east across the country. Their little party was slammed by a Canadian cold front which turned into a massive storm. We got 5" (just think if that was snow) of rain. So no trick or treating for safety's sake for a few days. (But I think all the smart kids are going to get their parents to take them to another town tonight and then back home on Friday so they can trick or treat twice.)

But I digress. Years ago, all my friends and I would dress up in our costumes and go to parties for Halloween. That was possible because we were in our twenties and had the ability to stay up after 10 pm and didn't really care how we looked like. And it was all about having fun.

One year, a friend showed up in regular clothes. We all asked her what her costume was. She said she was a serial killer 'because they looked like everyone else'.

This now makes me think. When you have cancer, you usually pretty much look like yourself and get around, until your cancer progresses and life starts to really suck because it includes a deadline.

So along that thinking, I could dress up as a cancer patient and say 'because we look like everyone else'. Or I could dress up as a rheumatoid arthritis/fibromyalgia patient for the same reason. (Or because my leg is in a big brace, I could dress up as Captain Hook with a peg leg... But that might be too much work.)

My point is that we can easily overlook people because their diseases do not show. We may have some very significant ailments that greatly impact our lives but they do not show to the rest of the world. We are just regular people with health issues. Do we need special treatment? Maybe, maybe not, or maybe just a handicapped parking space. Just remember that appearances can be deceiving and we can be hiding a lot under our normal appearances.

Monday, October 30, 2017

Frustrated

I am very frustrated right now. I am incredibly limited by my health normally and now I add in my knee that I am not supposed to be fully weight bearing or bend more than 90 degrees and the fact that I can't drive. Yesterday I really overdid things with my knee.

I am not supposed to bend my knee more than 90 degrees. I have a big (ugly, uncomfortable, awkward) brace to keep my leg straight that I no longer have to wear at home. I have smaller soft braces that are supposed to keep my knee straight but are much more comfortable to wear. It does make it easier on me. But doesn't protect my knee quite as much.

Yesterday morning we had another 'cat brought in the not quite dead chipmunk' which is now living in the baseboards of our dining room between periodic bouts of cat battles. At its first arrival, we waged an all out war on the thing, assisting the mighty 'Boots', backed up by soldier 'Evil Kitty' in his determination to dispose of it.

At one point during the battle when I was holding up table cloths and floor length curtains, for some stupidass reason, I bent my knee all the way. It did not instantly cause pain. But it hurts today. I will need to admit my lapse to the PT people today.

I need take it easy again today. I have to stay off my feet. I informed my family last night. We still have a house guest and she will have to be on her own because I just can't do anything.

So my frustration is:

  • Can't drive
  • Possible reinjury of knee
  • Unable to be a good hostess
  • The house looks like crap
  • Pain
  • Stuck at home
Finally, we also had a huge storm last night (typical New England - a tiny hurricane named Phillippe came up the coast and had a party with a Canadian cold front and another west moving front on top of New England). The are trees and branches down all over and many people without power. I will get to sit inside and look at the debris everywhere. More frustration. Grrr.....

Saturday, October 28, 2017

I Did It Again

Yes, I did it again. I over did things. I have to recover by spending a day in bed. I have lots of yarn to knit. I have an ice pack for my knee. I did some of my exercises. And I do plan to get up and take a shower eventually. But I have no plans to do much else today.

We have a house guest again, one of my cousins. Yesterday we did what both of us consider to be fun. We went to an estate sale which had some craft materials and the New England Quilt Museum (worth a stop if you are near). My cousin quilts and I am a craft junkie who is about to add quilting to my repertoire. It was very nice to get out of the house and do something fun. I have been trapped at home too much as I can't drive for another 12 days.

By 3 pm I was exhausted. My left foot really hurt. I am not really weight bearing on my right leg, or weight bearing as tolerated. We had explored the museum - right now embroidered and embellished quilts going back to the early 19th century - and then stopped by their library where they were selling quilting books. I got a few so I can learn how to assemble the quilt that is in my brain (but not yet created).

We got back home around 330 and I had to lie down for close to 1.5 hours before heading out for dinner. I was a tiny bit tired by the time we got home last night. After 11 hours sleep, I definitely need to stay off my feet for the balance of today. Of course its the first nice, warm, sunny day out there. But I will stay in bed until we head out for dinner again tonight.

That's the thing with house guests, we end up going out to eat a lot. Its fattening. And I can't get any exercise.

I am having a lazy day as a result of yesterday. I just took a shower. I ate some breakfast and made a dinner reservation... I think I need to nap.

Thursday, October 26, 2017

Cautiously Optimistic

I have a bit of optimism today. Nearly two years ago I stopped working because it was too tiring for me. I fell asleep at my desk a couple of times and would frequently struggle to stay alert on the way home after a long four hour work day.

Pain isn't my enemy. Pain can be controlled. Fatigue can not be controlled. Its not that I need to nap every day. But I need to rest every day. I can't stand for any length of time or my back hurts. I need my rest. Call me a wimp but that's what it is.

I applied for Social Security Disability in the spring of 2016. I have been denied twice so I had a hearing in front of a judge yesterday. My attorney made some good points with the judge.

I have cautious optimism that I will get a positive decision from the judge before the end of the year. Actually I can only be cautiously optimistic that I will be approved. I have no other choices....

Tuesday, October 24, 2017

Is There Less Pinkification This Year

A week or so ago, I watched an NFL game and decided that something was wrong. It was october and players did not have pink shoes and pink towels. Then I have seen a lot fewer pink events. I haven't been out much because of my stupid knee, but I just feel like there is less pink around.

This makes me happy. I would love to go back to the month formerly known as October and see orange and brown again, lots of carved pumpkins and zero pink ribbons. I don't need to have pink everything. And this is the first October in many years that it has not been covered in pink.

What is wrong? Is the country burned out of pink stuff as a result of the Komen blow up a few years back? Does the media have other things to focus on besides pink ribbon events - like the latest fashion styles of the first lady and her husband's rude tweets?

Maybe that pink thing is just so embedded into society that we do not notice special events any more.

I am happy that there is less pink... I need to go carve some pumpkins.

Monday, October 23, 2017

I Need A Day In Bed

I am exhausted. I have been too busy. I can't keep up with my last few days.

My husband came home from his business trip on Thursday night late. I stayed up to wait for him so I didn't get enough sleep. Friday he took the day off and we went to the grocery store, the library, PT, and more. Friday night my brother and his girlfriend showed up - after I went to bed so I got up and talked to them for a bit. Saturday I had a craft show and we left the house at 7am. I wasn't home until 530 and then we went to my parents for dinner. Sunday I had a craft show and we left the house at 8am. I got home at 5pm. Then we went out to dinner with my family. This morning my husband went to work and I had breakfast with my brother and his girlfriend before they left around 9am.

Now I have a plan for the day:

  • Lie in bed for most of the day
  • Do my PT exercises at least twice today so I can tell them truthfully I have been doing the when I go back tomorrow afternoon.
  • Keep my feet up for most of the day.
  • Catch up on a little bit of paperwork after my craft show
  • Talk to my attorney about my upcoming disability hearing.
  • Not eat any more cannolis until Walter gets home tonight.
I am physically exhausted from being at the craft shows and on my feet too much.So my feet hurt from my RA. 

The problem is I should be tidying up for the cleaning people who are coming tomorrow. I think that won't happen. I think I will do the basics tomorrow morning and go with that. I just don't have the energy.

And I have to prepare for upcoming house guests. Ether three or four cousins will be visiting between now and Thanksgiving and staying here at different times. Well, two might come together. But that is a lot of house guests. I'll plan on lots of naps.

Friday, October 20, 2017

Being A Bad Patient Vs. Being A Rude Patient

There is a vast difference from being a bad patient as opposed to being a rude patient. Yes I know often when we go to the doctor we are not feeling are best and are probably prone to over reactions and stress. But there is no reason to be rude.

So I was appalled when I read this article on the amount of the abuse faced by doctors. Medical doctors have studied for many years. They know what they are doing. They are professionals who are trained to take care of people. They are human beings, just like you or me. So there is no reason to be rude to them.

"A wide-ranging survey of more than 800 U.S. physicians, conducted by WebMDand Medscape in collaboration with STAT, found that 59 percent had heard offensive remarks about a personal characteristic in the past five years — chiefly about a doctor’s youthfulness, gender, race, or ethnicity. As a result, 47 percent had a patient request a different doctor, or ask to be referred to a clinician other than the one their physician selected.

Fourteen percent said they had experienced situations in which the patient complained, in writing, about the doctor’s personal characteristics.

African-American and Asian-American physicians were more likely to face such attacks, and female doctors were more often the victims of bias than males. But patients found targets in every imaginable corner: 12 percent of physicians, for instance, endured offensive remarks about their weight."

Does it really matter about a doctor's age, weight, gender, race or ethnicity when they are treating you? I do realize that some people prefer a male or female doctor for certain exams but there is no good reason to be rude to them about any of those demographics.

And certainly swearing or using derogatory or racist terms when referring to the doctors is just plain wrong. What does it matter what they weigh? I know all my doctors seem to be toothpicks, at that perfect BMI, and I feel fat next to them. 

When I first saw the title to this article,  I assume it was about the abuse nurses face on a daily basis - where they are hit, bit, pushed, shoved and more. This is another significant example about how a profession is being abused by the rest of us. 

A significant part of this issue is that many doctors have to resources to support them when faced by this kind of treatment from patients. What are they supposed to do, bite their tongue and keep treating them? Verbal abuse can leave emotional bruises where no one can see them but they still deserve help. And its just sad if hospitals need to provide resources to protect the people they hired to take care of others.

There is no room in the world for this kind of treatment. No one deserves this kind of treatment, especially someone who has studied for many years and wants to take care of people.

Thursday, October 19, 2017

Self-Imposed Isolation

I have spent the past few days basically by myself as my husband has been on a business trip. Yesterday I didn't even talk on the phone all day. I did talk to my husband in the morning and the evening. I also chatted with my neighbor and her two little boys between my front steps and the street. The day before I talked to my parents, sister, neighbor, and husband on the phone. In between there I have cancelled and made doctor appointments and talked to my attorney about my disability claim. Otherwise, the TV has been on the background to provide some noise as I have stayed by myself.

This is the most time I have spent by myself since in chemo where I physically did not feel well enough to do anything.

I have been enjoying my time by myself. I have focused on my weaving and knitting. When you do crafts, you get into a 'zen' mode which is similar to meditation where you get the same benefits of meditation. It has been enjoyable. I have not felt lonely (besides the cats are here to keep me on my toes).

I could have called more friends and spent more time on the phone. I could have found someone to go out to lunch with if I had wanted.  But I didn't.

I have tidied things up around the house. I have rested my knee. I made a daily excursion to the mailbox and back in through the garage to take care of things down stairs.

I feel like I have spent time for myself. I didn't have to worry about needing to make meals. I ate when I was hungry. I fed the cats when they were hungry. It's been a lot of well needed 'me time'. I know I don't have the obligations of a family or a  job.

My obligations are usually defined by on and limited by my physical abilities. I do things for a while and then I rest. That has not changed here. I do what I want and then I rest. But my resting might include knitting while I lie in bed with my leg up as I rest my back.

Tonight it all changes. My husband returns this evening and has the day off tomorrow so we can get some errands dealt with. So my self imposed isolation is ending and I have enjoyed it. I hope to repeat it again in six months or so.

Wednesday, October 18, 2017

A Sort of Medical Vacation

I can't drive for the next three weeks - until November 8. I was concerned about all the doctor appointments I booked for myself after this week's surgery follow up when I thought I would be given permission to drive again.

Then I got a bright idea. I am going to take a 'medical vacation' and not go to the doctor until after my next surgical follow up. I mean why not? A mental medical vacation is a great thing to do several times a year. I was talking to a friend who's husband had gone through colon cancer. She talked about having a week off as being a sorely wanted break. I want three weeks off. Because I am whiney. And because I can't get there.

I have found a Lyft driver to get me to physical therapy which starts this Friday (and continues for six to eight weeks). I have arranged a discount rate to fit my budget. But the most important thing about my medical vacation is that I do not need to go to the big 'hospital' any time soon. I can't even drive my father there because I can't drive....

Back when I used to work for a non profit which provided support groups for cancer patients, one of our main features was that our support groups did not require patients to go back to that 'hospital' where all the bad stuff happens - like surgery and diagnosis. There is a huge emotional burden on cancer patients every time they head back to the damn hospital (and it does become a 'damn' hospital pretty quickly).

One day, I was heading for the hospital to go to their evening breast cancer support group. I was hit by a huge wave of emotion that I really did not want to go back there again. I had been there too much. I had too many bad things happen there - two cancer diagnoses. I didn't not want to be there any more than I had to. And no I don't go to that support group any more.

So that was the long way of saying, I am on a medical vacation. I will go to PT three times a week and do my exercises. But I will not go to the doctor - with six or seven appointments in November alone.

Tuesday, October 17, 2017

Eek! Hair Dye Causes Breast Cancer!

How many women color their hair? I think most of my friends do. I don't and I am unusual among the women I know.

But, brace yourselves, the news is now going to be filled with the warning that coloring your hair with anything but natural dyes will cause breast cancer and you will die very quickly. Why? Because a researcher in the UK said so:

"Frequently dying your hair has been linked to an increased risk of developing breast cancer.

According to a study by London surgeon Kefah Mokbel, women who colour their hair have a 14 per cent rise in rates of breast cancer.

Professor Mokbel, who works at the Princess Grace Hospital in Marylebone, London, advises that women dye their hair no more than two to five times a year."

But here is the kicker:

“Although further work is required to confirm our results, our findings suggest that exposure to hair dyes may contribute to breast cancer risk.”

Professor Mokbel has also made clear that the link is merely a correlation: “The positive association between the use of hair dyes and breast cancer risk does not represent evidence of a cause-effect relationship,” he wrote on Facebook.


You need to note the word 'CORRELATION' before jumping to any conclusions. And then he opted to clarify more on Twitter (that ever so helpful 140 character way of communicating scientific and political information).

In addition, there was a Finnish study which also found a link between hair dye and breast cancer risk. But that researcher points out more information is needed because maybe women who use hair dye are also more likely to use make up which has some kind of chemical in it which could be more likely to cause breast cancer.

"Sanna Heikkinen from the Finnish Cancer Registry said separate Finnish research found a link between women who use hair dye and likelihood of developing breast cancer.

“We did observe a statistical association between hair dye use and risk of breast cancer in our study,” she said.

But like Mokbel, Heikkinen stressed that scientists aren’t certain of a cause-effect relationship though.

“It is not possible to confirm a true causal connection,” she said. “It might be, for example, that women who use hair dyes also use other cosmetics more than women who reported never using hair dyes.”"

So please use common sense and don't jump on the hair dye will kill you bandwagon which you will find far and wide in the news in the upcoming weeks. 

Monday, October 16, 2017

The Good Breast Cancer Charities

As you are asked to 'pink' all through October, you are advised to give to the good charities and skip the pink crap. Charities are rated by Charity Navigator and Charity Watch. These two organizations list the following as the 'good' ones to give to:

Charity Watch

Charity Navigator
A special note is provided on the Susan B Komen Foundation (for a Cure):

"The charity received mixed scores from the watchdogs. Charity Navigator gives Susan G. Komen for the Cure a 3-star rating (out of four) and lists the percent of its expenses spent on programs and services at 81.6%.

Charity Watch gives the Susan G. Komen Breast Cancer Foundation a C+ rating with program percentage of 62%-77% and the cost to raise $100 of $12-$27." 

Based on these numbers Komen (for the Cure) would be very low on my list of donations. But if you do I am sure you will get a thank you note covered in pink ribbons.

In reviewing charities, the important things that are looked at include how much of the money they raise is used for their cause and their programs, as opposed to overhead which covers things like salaries and rent. Those highly paid executives at many big charities can easily change their percentage just by taking a pay cut.

So let me make a few comments here. First of all I find it interesting the differences in the two lists. This shows how objective this can be. But I am taking what was quoted in a USA Today article and have not checked the two sites lists myself. 

Second of all, I am not a fan of the National Breast Cancer Coalition Fund. These are the people who want to eradicate breast cancer by 2020. They have two years to go so I don't think its going to happen. And they do not focus on metastatic cancer, hence they are also known as #deadby2020.

Finally, my personal preference of where to donate would be: Breast Cancer Foundation, BreastCancer.org, or Dr. Susan Love Foundation.  

Sunday, October 15, 2017

Health Caused Limitatons

Over the years we all accumulate our health caused limitations. I have just a few. Due to thyroid cancer, I have no thyroid and am dependent on a daily pill for the rest of my life. And with any decongestant I have to ask the pharmacist if I can take them because they often say do not take if you have 'thyroid disease' so I need to clarify.

Breast cancer left with left arm lymphedema so no shots, blood pressure cuffs, IVs, or any pressure on my left arm. So when I had surgery last week, I had an IV on my right wrist and a blood pressure cuff above it.

I also have two bad knees, a bad back, bursitis in my hips, etc that try to slow me down.

But a royal pain in the ass is my knee brace. I am so limited right now in what I can do. I can't drive. My other knee has started hurting. I am stuck at home.  I am whiney and frustrated.

This too shall pass. I hope I get the green light to drive tomorrow and a different brace that actually fits.

But if its not one thing, its another. Our health conspires to limit us. We just need to ignore it and work around our limitations and keep going.

I just needed to whine. Sorry.

Friday, October 13, 2017

Recuperating (Or Being A Bad Patient)

I am recuperating from my surgery. It has been 8 days now. I am starting to get to the annoyed stage. The seriously annoyed stage.

First of all, I am stuck wearing this dumba$$ knee brace which does not fit. It is too big for me. I can't tighten the lowest strap to be useful. If I am wearing anything underneath it (including the TED compression stocking I am supposed to wear every day for the next three weeks - which is not happening), it just slides down my leg. So I am stuck wearing shorts. Today is a little chilly for shorts but that's why I have sweaters. I am supposed to wear it 24/7 except when showering.

Second, I believe I am supposed to be doing exercises. I do some sometimes. They are written on a piece of paper that is in a very safe space. When I find the safe space I'll make sure I am doing them as much as I should.

Third, I am supposed to take it easy. I am, mostly, sort of. Friday, the day after surgery, I did nothing productive. Saturday, we went to two estate sales and three yard sales. I got two beautiful antique canes - one with a brass eagle for a handle and the other with a brass duck head. Sunday, I made bread. Monday, I can't remember. Tuesday, I went to my father's doctor appointments and was out from 830am to 330 pm. I was tired when I got home. Wednesday I made home made bagels and set up both my looms. Thursday, I went to knitting and then came home and slept from 4pm to 5am. I think I tired myself out.

Fourth, I am allowed to fully weight bear on my leg provided a use a cane. I keep misplacing my cane. Its somewhere around here. I use it when I leave the house but the instant I come in the door, I put it down someplace.... I find it again before I leave the house again.

I may not have spent as much time resting my knee but I don't want to be bored. Bored people eat things like ice cream and cookies between meals. I can't wait for my appointment Monday. I am going to demand a new knee brace that fits and is less awkward. And I want to be able to drive.

Its been torture not being able to drive. But my friends have been nice and have been taking me places. I already have some lined up for next week if I can't drive.... If I can't drive, I might go crazy.

I don't think I am being a very good patient. But I am trying.

Thursday, October 12, 2017

The Importance of Learning About Your Health

Can you answer these three questions from the Brief Health Literacy Screen (BHLS): 
  1. How confident are you in filling out medical forms on your own?; 
  2. How often do you have someone help you read hospital materials?;
  3. How often do you have problems learning about your medical condition because of difficulty understanding written information?
They appear simple. Many people I think would say Very, Never, and Never. But then if you add in the complication of not knowing English very well, a lower level of education, or just being sick and not clear headed at the time, those could change easily to: Not at all, Often, and Frequently.

What is the result of this kind of problem? Longer hospital stays for one:

"Using the BHLS screen, 20% (1104/5540) had inadequate health literacy. Patients with low health literacy had an 11% longer average length of stay (6.0 vs 5.4 days). Among men, low health literacy was associated with a 17.8% longer length of stay, and among women, low health literacy was associated with a 7.7% longer length of stay."

Longer hospital stays result in more exposure to germs, bigger bills, less rest for the patient (who ever gets a good night's sleep in a hospital) which ends up with more patient stress.

A recent study showed all this and more. Read it here.

Wednesday, October 11, 2017

Tumor Size Doesn't Matter

All cancer tumors start small and end up bigger. This is logic that is clear as day.  Tumors don't show up 3 cm across out of nowhere.

A new study states that even small breast cancer tumors can be aggressive. Well duh. If all tumors start small, of course aggressive ones and indolent (slow growing) ones are included. I don't call this news. I just call this an exposure of logic.

When I was diagnosed with breast cancer I was happy to learn more about my tumor. Its hormone status (ER/PR) was important, Her2 status was important, and tumor grade was import. The grade is a scale of one to three on how aggressive a tumor is. (This is my non medical training kicks in.) If there are lots of dead tumor cells, that shows growth because tumor cells which are aggressive are growing fast and dying off fast. The presence of lots dead cells is an indication of this. An aggressive tumor warrants more aggressive treatment.

I was lucky. My breast cancer was average in many ways. It was ER+/PR+ - meaning I was a good candidate for hormonal therapy, Her2- - meaning I didn't require additional treatment of Herceptin, and grade 2 - meaning it was average on the scale of indolent to aggressive.

I had a friend who was diagnosed about the same time as me. She was gone in three years. Her cancer was about the same as mine except hers was very aggressive. That's the difference with an aggressive cancer.

However this study does provide some good information:

""This study shows that it's not only tumor size that is important for breast cancer patients but also tumor biology. All tumors in the study were small - less than 1 cm - and the lymph nodes were free of cancer (node negative), which in principle should be a signal of good prognosis. But nearly one in four patients - those identified as genomic high risk - derived benefit from chemotherapy.""

""Small node negative tumors can be very aggressive, even if they are classified as clinical low risk," said de Azambuja. "Tumor biology needs to be taken into account when deciding adjuvant treatments in this patient population. One cannot forget the patient's age, performance status, comorbidities and preferences during the discussion.""

Tuesday, October 10, 2017

The Road Through Chemo

Everyone's road through chemotherapy is a bit unique. We all face our demons of nausea, fatigue, hair loss, and emotional ups and downs differently. We struggle through. And then we somehow make it

I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:

"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”

These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.

“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."

He clearly starts faced with the fact that much of the advice for cancer patients comes from people who do not have a clue. Clearly the advice from NCI is in that category. This is one of the things that all cancer patients learn - people who haven't walked the walk, are unable to talk to the talk. They do not have a clue.

But as you read through his story you see how he learns to get through it. He gets a good social worker who gives him advice and supports him as he goes through his infusion. Her advice is one task a week - send one email. That makes things manageable. I can relate. I could do one thing a week while in chemo.

He learned that it is normal to deal with the emotional side of chemo. He meets a new friend along the way who told him when he went through chemo for lymphoma, he struggled as well emotionally. "“I found the nonphysical effects of chemo the hardest. Psychologically I fell apart.” I felt another flash of self-compassion. So it’s OK to be like this. I had been given a lifeline." 

Finally he makes it through. His brain starts to clear, he is returning to life. I cannot say returning to normal because you can't. I just really like his descriptions of his chemo adventure. He put into words what I could not - the ups and downs of cancer.

Monday, October 9, 2017

Trapped At Home

I haven't been so trapped at home since chemo. Then I was too sick to care that I spent my life inside watching TV, hanging out with the cat. Right now I have a giant brace on my leg and can't drive until next week.

My husband is home today, but its day five of 'togetherness' and its starting to get old. Its great that he's doing the laundry I sorted, saving me trips up and down our one flight of stairs. But we are running out of things to do together. He does have other projects he is working on.

Tomorrow a friend is rescuing me and taking me for coffee and then dropping me off at the hospital so I can go to my father's doctor appointments with him. The difference is I will be the one in the wheelchair, giving him a hard time about driving skills, instead of the otherway around.  But I will be out of the house for a good four or five hours.

Thursday another friend is rescuing me and taking me to my knitting group. That will keep me out for several hours again. And I get to see people and talk to them in person.

In the meantime, I am trapped at home with the cats - and the (damn) half dead chipmunks they keep bringing home. Because of my knee and lovely brace, I can't do much of anything. Standing is difficult for any length of time. Sitting is okay. Lying down with my knee up is best. This is very limiting.

I have the DVR and all the 'bad' tv I have recorded. I have tons of knitting I can do. I have to finish a weaving project and set up my loom again (if I can).

But I am not in a lot of pain. The cranky whiny stage has not yet appeared but could be looming in the background. Maybe its time to finish painting the kitchen... Or maybe not.

Sunday, October 8, 2017

New Research Which Could Have More Thought

There is always more research going on - especially cancer research. Especially breast cancer research. I swear sometimes the world is full of research labs papered in breast cancer research papers.

Anyway, this time I don't necessarily agree with this new research. In a ten year study, maybe not all breast cancer patients need an AND (Axillary Node Dissection) if they have a positive sentinel node with their lumpectomy. Why? Because if you are going to have chemo and full breast radiation, they would catch all the cancer cooties and nuke them anyway. Hmmmm.....

An AND can give you lymphedema.... which I have now.... the real reason for skipping this surgery. And who wants additional surgery anyway?

Okay so this study looked at around 900 women who had early stage breast cancer and one or two positive sentinel nodes and then were having chemo, radiation and hormonal therapy. They split them in two groups and followed them for ten years. After that time both groups had similar recurrence rates. This study did not include women who had mastectomies or suspicious or enlarged lymph nodes in a physical exam.

"To make sure that women have the appropriate lymph node surgery, the American Society for Clinical Oncology released guidelines on sentinel lymph node biopsy for people diagnosed with early-stage breast cancer. The guidelines say sentinel lymph node biopsy SHOULD be offered under these circumstances:
  • breast cancer in which there is more than one tumor, all of which have formed separately from one another (doctors call these multicentric tumors); these types of breast cancers are rare
  • DCIS treated with mastectomy
  • women who have previously had breast cancer surgery or axillary lymph node surgery
  • women who have been treated before surgery with chemotherapy or another systemic treatment (treatment before surgery is called neoadjuvant treatment)
The guidelines say sentinel node biopsy SHOULD NOT be offered under these circumstances:
  • the cancer is 5 cm or larger or locally advanced (the cancer has spread extensively in the breast or to the nearby lymph nodes)
  • the cancer is inflammatory breast cancer
  • DCIS treated with lumpectomy
  • the woman is pregnant
The guidelines also say:
  • Women with negative sentinel node biopsies shouldn’t have axillary node surgery.
  • Women with one or two positive sentinel nodes who plan to have lumpectomy plus radiation also don’t need axillary node surgery.
  • Women who have one or more positive sentinel nodes and plan to have mastectomy with no radiation should be offered axillary node surgery."
Well, I say whoop-di-doo to all this. Why? Because they do not raise the issue of younger women with breast cancer. I was under 50 when I saw diagnosed with breast cancer - otherwise I meet the criteria. And it was my second cancer before the age of 50 (which puts me in a special class of people). 

I think that while these recommendations sound great and I like it when guidelines are updated and progress is made. But I think this research clearly overlooks the group of younger women who should be regarded differently. Often younger women are diagnosed with more aggressive breast cancers than older women. Now you see my concern?

Saturday, October 7, 2017

I Don't Do Pink Things Except....

I don't do pink things. I detest things where if you had breast cancer you are supposed to cover yourself in pink, including a few boas, etc. I don't participate in them at all.

However, I have some breast cancer friends who started out with me on the Komen message boards back in 2007. When they screwed up the message boards, we all left and moved to Facebook where we have remained friends. A bunch of them in the Midwest started what they called BreastFest at a park in northern Indiana, near where some of them live.

Overtime, this has expanded to be an all day event at a local hotel. Last year I went on a road trip with a friend to go meet them all. They all wore pink because they ordered the t-shirt for last year. I didn't. I wore a green t-shirt. I didn't buy a t-shirt because I didn't want one. I wish I had. I was going to order one this year. But we didn't get to go.

My compatriot who did the driving and provided the car, is having the floors redone in her house so it didn't work for her. She didn't want to reschedule because it took long enough to talk her husband into the change in the first place. And I ended up having my knee surgery.

But I am going to miss them. Today they are meeting and will drink wine and eat 'healthy' food all day. Then it will be nap time before a big dinner. And they will play games - where I haven't laughed as hard as I did since. And generally have fun.

I would wear pink for this group. Its a wonderful group of women. I will definitely go next year. Its too far for me to drive myself so I need my compatriot. Its a pain in the ass to fly to because its 3 hours from any airport and I don't fly well anyway. And I would need to commit to being healthy enough to travel if I paid for plane tickets - this is why we drove last year because if we weren't healthy we could bail and not lose money. We stayed at my brother's house on the way out and the way back so other than gas money, we had no real expenses.

Anyway, I will miss the ladies this year and will wear pink for them next year when I am there.

Friday, October 6, 2017

Number Nine

Surgery number nine was yesterday. I thought the surgeon was going to clean out my knee arthroscopically so it would no longer catch and lock up. That was a good idea.

Everything went as planned - including me being STARVING by the time we got there at 1pm after not eating since the night before - until I woke up after surgery. That's when I found out the bad news.

Well its a good news/bad news situation. The good news is that the surgeon fixed my knee so it will no longer catch - which is amazingly painful when it happens. The bad news is the repair is more complicated than the original plan. Instead of a clean out, he repaired my meniscus. This surgery is not usually done on people over 25 but I think since the tear was where it was repair was better than removal. However, recovery is four to five MONTHS instead of four to five WEEKS. A 'minor' difference.

And I have a giant brace I need to keep on all the time except when showering (and I can't shower until tomorrow). This brace is so big it doesn't tighten up around my leg except near my knee. And, and, and, and, and, and,.....
This isn't the best picture but I took it lying in bed with my leg out straight in front of me. You will notice the TED stocking I am supposed to wear every day as well. Its still drying from when I washed it last night. It might take a few more hours to dry.

I will say this is the first surgery that I woke up to a 'surprise' since Number One in 1981 where it turned out it wasn't a 'goiter' and was 'thyroid cancer'. But that doesn't matter. This just sucks.

However, there is plenty of ice cream in my freezer. My husband is home for the next four days straight to take care of me. I can weight bear because of the stupid ass brace and my cane so I can get around pretty easily on the one floor of our house. The cat even slept on my knee last night (as he likes too) which was okay because of the brace so he didn't squish me.

Can you hear me being grumpy already? I have to double check when I can drive because its my right knee. And the pain level is fine. I already have pain meds and can take them when I want but I only needed one last night and am okay so far today. I think I need to get more ice to put on my knee. Crabbiness may prevail for the next few days.

Thursday, October 5, 2017

Reminder What Not To Say To Breast Cancer People

As part of the universal pinkification of October, Good Housekeeping magazine has a section on breast cancer (who knew?). But one thing they do include is a list of 15 things not to say to breast cancer people.
  1. You’re going to be fine
  2. Everything happens for a reason
  3. You don’t look sick – you look great
  4. My brother’s friend had breast cancer here’s what happened to her.
  5. That’s why I don’t use antiperspirant (deodorant, underwire bras)
  6. I hate my large breasts; I’d love to get rid of them.
  7. How did they find it? What stage was it?
  8. Have you tried cutting out sugar?
  9. Can I do anything for you
  10. You’re a badass! You’ll kick cancer!
  11. We could all be hit by a bus tomorrow
  12. Stay positive
  13. At least you have your hair
  14. I’m praying for you, miracles do happen!
  15. At least you’re single, and you don’t have kids to worry about.

Most of these I find to be just plain rude. If someone has cancer, any type, they are so stressed they do not care about most of these. Even asking them if you can do something for them can be stressful. They have to stop and think if they need anything, which they probably do, but can't think of, so you added more stress, and they just say 'nothing, thank you.' If you need more understanding here, go read the rest of the article at Good Housekeeping.

Just think before you say anything (and insert your foot in your mouth). The best thing you can say to any one with cancer is 'how are you feeling today?' A simple easy honest question.

Then say something like 'I'm going to the grocery store, can I pick you up some milk, etc? Don't offer to mow their lawn, just mow it. Offer to take their kids to school in the morning and bring them home.

In the meantime, go buy some Halloween candy to get ready for the real reason for the month of October.

Wednesday, October 4, 2017

Pre-Op Day

Today is pre-op day. Tomorrow I am having minor arthroscopic knee surgery. Its no big deal. An in and out procedure that should last an hour or so. Nothing significant. It is to repair my right knee which has been locking up for the last year or so.

What it does mean is that I am going to be limited in my abilities to get around for the next week or so. I do not plan on using crutches because I hate them (and I have lymphedema). I really hate crutches. We live in a raised ranch and I bought a can so I should be able to maneuver around the one floor by myself.

My husband has taken tomorrow and Friday off and then will be home for the three day weekend. This means five days of togetherness. (I think I need to come up with things for him to do so he doesn't 'hover' and drive me crazy.) It is great that he will be home with me because I know I will need some help. Its hard to carry things while using a cane.

I went to the library yesterday and got a stack of books and a movie "Hidden Figures" that I have wanted to see. I have also been filling the DVR with shows to catch up on. I have plenty of knitting to do as well. I did laundry and just have the socks left to sort before I am done.

I am going to the grocery store today and am going to get a chicken to roast for dinner tonight so we can eat leftovers for the next few days. I think I am organized.

This is surgery number 9 for me so I have been through it before. Not including multiple medical misadventures. I know what to expect for the most part. I know what I want to tell the anesthesiologist for which anesthesia did okay for me and which did not. I have figured out what to wear tomorrow - shorts so its easy to get dressed post surgery.

I have found that being organized is the most important thing when you are going to be laid up for a few days. I hate being dependent on anyone for anything. I have everything I need. I can always send my husband out for things we forgot or we can get food delivered (if we get bored with leftover roast chicken).

The one thing I do need to do today is to find out what time I need to be there. They are supposed to call me today with that information as well as the 'do not eat after midnight, no water two hours prior, etc'.

I hope for an early time so I can get it over with. The worst is sitting around waiting for your surgery time and being starving because you can't eat. 

Tuesday, October 3, 2017

Having Fun With Other Friends

Recently I blogged about being aggravated and frustrated when having lunch with a couple of old friends. I was very upset by the end of that lunch so much that I woke up aggravated and frustrated the next morning. I knew it was time for a change. I won't be spending much time with either of them any more. I know they are upset. Well I am upset too. Sometimes its like talking to a brick wall with some people.

Since cancer, I can no longer count the number of friends I have lost. There was one old friend who I reconnected with on Facebook after breast cancer. We were talking about lunch sometime, until I told her about my breast cancer and instantly she was no longer available. There are many others too.

I have also had people who have become so toxic and negative I can no longer emotionally afford to be in contact with them. I have blocked them on FB, blocked their phone numbers, and more. As my health declines I can't afford the stress of toxic and negative people.

So what have I been doing with my time? Making new friends and having fun with other friends - the nice supportive kind.

I've been busy. This week I have already been out for a nice dinner with a friend and her husband and son and my husband, out to lunch and shopping with another friend, and today I am going to the Garden Club. I have plenty of people to have fun with.

I don't need to deal with people who stress me out. I feel like this is a win for me.

Sunday, October 1, 2017

Pinktober

Its now Pinktober. It will be horrible. There will be pink on everything. There were even little pink ribbons on the bananas I bought last week. I was appalled but I didn't notice until I got home and it was too lazy to bring them back.

But please brace yourself and do not get sucked into the pinkification which will be rampant all month long. Please do not purchase anything or donate to anything that claims to support breast cancer unless you know the following:

  • The organization to which the money is going - are they a real organization that really will use the funds to provide what they said they will.
  • That the total amount of the money you think you are giving to a organization is really going to them. You need to check the fine print on the label to learn this. 
    • Is it $1, $5, or $10 or what amount going to them. Just because you spent $30 on something, what portion of that is going to support a cause. Its probably not the full amount.
  • Is there a maximum amount for the program? An example of this is that big companies will say '$1 from the price of this lipstick will be donated to XYZ organization, up to a total donation of $25,000 for the year'. Read the fine print again.
  • Don't purchase anything you really do not want or need. All this pinkification is designed to help sell more products. Its just a big marketing ploy. 
Breast cancer is the current 'cool cancer' and pink is such a 'pretty color' it can be splashed all over everything. But its just a big money maker for big industry. Not for the little peon breast cancer patients.

If you really want to support breast cancer, find a worthy cause - American Cancer Society, BreastCancer.org, or a local organization you know well. And send them a nice check. You can even put it into a nice pink envelope if you want.

Saturday, September 30, 2017

I Am A Klutz

Today I was at an event where I might have fallen a tiny bit. I must say I am not completely unfamiliar with the room because I was in that same room in 1989 or so at a friend's wedding. So I must have memorized the entire room layout then (although I know alcohol was involved at the wedding).But things might have gotten a little hazy since.

But my question is who carpets an entire room with the same carpet on everything except the dance floor? By the carpets rest of the room I mean stairs that go across the full length of the room and the DJ/band riser at the end of the space. In a dark blue carpet which shows no contours in any light. With no reflective tape or anything.

So I walked across the room, missing the riser. Then I walked back across the room to return and discovered the riser for the third time today. I might have caught a little air in this event. I did not do major damage to my body. I did land on my right knee and right thumb. I have a tiny scrape on my knee.

When I did take this tiny tumble, a couple of people asked me if I was okay. I said I needed a minute and tried not to cry in front of a crowd of strangers. But then I sat there. Then I finally stood up. And was really about to cry (stiff upper lip be damned).

But I made it home. I got in bed with a heating pad for my back and an ice pack for my knee. Three hours of bad TV later, I am feeling better and my husband is about to serve a nice home made dinner.

But I am still a klutz and will pay for this tomorrow.

PS by posting about stupid stuff, I can avoid some of the other issues in my life for a while

Thursday, September 28, 2017

My Cholesterol Improved

I have no idea what I did but my cholesterol is much better than it was a year ago. I don't know what I have done differently with my diet (I thought I had adopted a whole bunch of bad eating habits) but my total cholesterol dropped more than 50 points in the last year. Maybe I need a burger and fries for lunch today...

That was the good news. The bad news is I have referrals to three different types of doctors - ENT, eyes, and a pharmacotherapist.

The pharmacotherapist is going to review all the meds I am on. I like that idea. I have so many medications from so many doctors. My PCP is concerned about too many interact and why I am on them and how can we get rid of some. Finally someone is taking a look. One big part of the problem is my previous pain management doctor would just increase my meds without explaining or change to a new med with no explanation. Now my new pain management guy is actually talking about reducing some meds and has changed some already.

My PCP told me that a lot of my weird numbers like heart rate and others can be screwed up by all my medications. She sent me for a pile of bloodwork and an EKG since my last one wasn't so great.

So I thought it went well. I even lost 5 lbs. But I forgot to ask her one key question. Damn. I'll send her a message later.

So after cancer, I like this kind of doctor appointment. She looked at my big picture and can't find any reason I might drop dead tomorrow.

Wednesday, September 27, 2017

Off To My Primary Care

This morning I go off to my primary care for my annual physical. Although there are lingering thoughts of 'what if she finds something bad', I will squish them down for the duration.

However after cancer, even though you have all sorts of oncologists and other fun doctors, your primary care is the one who is supposed to oversee your care. Hence, I have a paltry list of 15 questions for her. And I assume I will be sent for blood work after and maybe other tests. I expect I will be there for a few hours.

I am looking forward to talking to her about multiple issues that do not fall under the care of any of my bazillion specialists. And there are a few. If someone (besides me) can pull all my medical crap  together and make sense of it, I will be happy.

After I will go to the gym to work off any residual stress.

Tuesday, September 26, 2017

Sense of Humor

How is your sense of humor on a normal day? This is a serious question. Do you keep your sense of humor? Do you have a sense of humor? If you don't have a sense of humor, I think it would negatively impact your health issues.

Yes I have no training on any kind of medical or psychological information. But I do think a healthy sense of humor is very important as a coping mechanism. If you can crack jokes, you probably are not on death's door.... right now.

Personally, I think sense of humor should be checked, just like any other vital sign, at doctor appointments.

Monday, September 25, 2017

Aggravated, Frustrated, And More

Yesterday I had lunch with two friends who I have known for a very long time. One since the 1970s and the other since the 1980s. While I have sensed over the years they do not understand what I am going through. Yesterday revealed the truth. They do not have a clue. I was so aggravated when I left lunch and I woke up aggravated about it this morning. They were insensitive, self centered, and ignorant of my limitations.

I made a lunch reservation and had hoped to be there first so I could get a table with chairs and not a padded bench, which can sometimes be difficult for my back. As my friend, A, was already seated, I decided I wasn't going to make a big deal out of it as the bench seemed okay at first.

We chit chatted a few minutes waiting for B to show up. She was late. She is always late. She is incapable of getting anywhere on time. I find this very frustrating because I am limited to how long I can be out with my health issues. She doesn't get it.

When B showed up, she told us why she was late: she did text us as she was about to leave but then she had to put everything in her car. Then she realized she forgot her phone so she went back. Finally she realized that she forgot her laptop and, as she was going to work after lunch, she would have to go back and get it. And every statement she makes she knocks her hands on the table so it makes it shake which hurts my back. I just sit with my hands off the table. She always bangs around.

Lunch was very good. We took our time so we could chat and catch up. We split a dessert and kept yakking away, with the table being pounded on by both. I think they do it without realizing it.

A few statements were made by them: 'She (a relative of a friend) must be very sick because she takes 20 prescriptions'. (I have that many, or more). 'Why doesn't your back get better?' (For how many decades do we need to talk about this?)

Eventually, after almost 2 hours, I said something about my back hurting. B said 'I thought we were going to have a nice long lunch'. How long is a long lunch - 5 hours? Then A pulled out a set of probably 50 pictures to show us, in great detail, one by one, with descriptions.

Finally I just said I have to go because my back is killing me. I made a point of standing up. But then we had to stop so the hostess could take a group picture of us..... Arghhhh. I just needed to get in my car and its supportive, contoured car seat, with no more vibration from the table.

What upsets me the most is that they just do not understand. They claim to be some of my oldest friends but have no idea of what I deal with day to day. I do not expect my friends to keep up with every detail of my health. I just want them to have a general understanding of my health and that I have many limitations. And that I am not getting better anytime soon.

What this means in the end, I will not spend as much time with them in the future. If they can't realize that I have limitations and am not very helpful. I don't think they are my friends any more.

Saturday, September 23, 2017

Clearing Your Plate For Better Balance

With a slew of health ailments comes lots of responsibility.  I need to take responsibility for taking my medications, getting to my doctor appointments, getting to the gym to keep a minimal bit of fitness, as well as basic household stuff (laundry, groceries, garden, etc) as much as I am able. I also need to take care of my emotional self.

Therefore I need to clear my plate of crap and balance myself better. There are some things which should just be taken right off my plate. These include:

  • Anyone else's problem. Sorry. I don't have time for them. I'll talk to you about them. Commiserate with you about them. But I will not stress or worry for you. Sorry.
  • Anything that is beyond my control. Idiots in Washington, or any other politician anywhere in the world. The weather. Climate change. Hurricanes or blizzards. 
  • Anyone who is trying to make me feel bad. If you don't like how I look, what I am wearing, what I am knitting or reading, etc. Sorry. That's your problem. Not mine. As a result you will find you see me a lot less because I don't have time for your attitude.
All of the above has just be pushed off the edge waiting for the waiter with the crumb scraper to clean them up and throw them away.
As a result of doing this I may appear unsympathetic to some but I am trying to preserve any remnants of my sanity. 

If you find yourself overstressed, try clearing your plate of anything you can. You can't take on the burdens of your friends and family members. You can be concerned but you need to focus on yourself. Start getting rid of the things similar to what I took off my plate and see if you can achieve better balance.

Friday, September 22, 2017

I Travel In Elite Circles

Well I don't travel actually. But Lady Gaga of all people and I have something in common.We both have fibromyalgia.

Her fibro is bad enough that she has cancelled the European leg of her latest tour. Because of pain and fatigue.Why do those terms sound so familiar to me?

Think of it this way, if a famous personality who makes money by going on tour to sell more albums (or copies of songs downloaded - or however they count that these days) has to cancel, she must be in a lot of pain.

I can relate. (I wish I had a European tour to cancel - as long as I went to a lot of beaches and my husband was there, and someone else carried all the luggage) . I am happy these days with making it through going to the gym and the grocery store before I collapse.

I hope she feels better and gets some good pain management to help.

Thursday, September 21, 2017

Complications After Cancer Linger

My least favorite phrase is 'with your medical history we need to be sure'. I have been hearing it since my first cancer diagnosis. Even though my two cancers, thyroid and breast, are not what are considered the most horrible kinds, they both could recur and kill me anytime they want.

What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.

All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.

After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.

Wednesday, September 20, 2017

Well, Crapola!

A few weeks ago, I posted about what my pain medication may hide, yesterday I found the truth. Call me slow about some things but I had to do some thinking.

I have RA, fibromyalgia, bad back, etc - all sorts of nice things that cause pain. So I get the good drugs. I have this awesome pain patch that masks 99% of it. It wasn't until I was an idiot a few weeks ago and forgot to change my pain patch I had no idea how much pain.

The thinking process I had to go through was what was all that pain from and why is it important? I know several people that have RA as well, my mother and an old friend. Both of them are on injected biologics for their RA and nothing else. My mother has other issues and has pain meds. My friend does not have pain meds. Her RA is only treated with a biologic.

More thinking. Then I thought, was my treatment of methotrexate and leflunomide supposed to be taking care of all my RA issues and stopping progression? I didn't really know. In recent visits with my rheumatologist she had been concerned why my knuckles were sore (which they shouldn't be because of my treatment) and she had tweaked my treatment a few times.

Finally, on Friday I decided this has gone on long enough. I sent a message to my rheumatologist (who doesn't work on Fridays) and her nurse called me back. She asked me a bunch of questions. I asked her one question - is my treatment supposed to be controlling all my RA so that I don't have significant pain? Her answer was yes. So I knew, my pain meds were hiding much more aggressive RA than previously thought.

Monday, I got a call on when I could come in to see the doctor or one of her PAs as soon as possible. I actually got into see her yesterday. She needs to go to the next level in treatment and talk to my oncologist because of my cancer history. Some biologics have a TNF factor hidden inside (the T stands for Tumor) and she doesn't want to give me a recurrence (which happened to one of her patients a few years back).

But wait:
First, in the interim she wants me to try prednisone again to reduce inflammation. Start really slowly so I do not react again and if I do react I need to call her.
Second, she needs to talk to my oncologist about her thoughts on my medical history and RA treatment.
Third, she isn't going to change anything until my knee is completely healed after my October 5 arthroscopy. So this will be mid to late November before this change happens.

What all this means is now I am no longer in the mild to moderate RA club, but in the moderate to severe RA club. Another club I don't want to belong to.

Monday, September 18, 2017

Being Breast Cancer Savvy

Buried in another article based on a woman doctor's problems getting screened for breast cancer by the UK's NHS, are three rules on how to be 'Breast Cancer Savvy'

  • You Don't Need to Examine Your Breasts
    All women, no matter what age, should get to know their breasts. But experts have stopped recommending self-examination routines. Studies have shown that most women who find breast tumours do so during the course of everyday life: while dressing, or just rolling over in bed. The key is to know what looks and feels normal to you.
I wholeheartedly agree with this. I am incapable of finding any lumps.
  • Don't Ignore Symptoms
    The most common sign of breast cancer is a lump within the breast. But you might find one in the armpit or notice skin changes on the breast such as dimpling, and changes in the appearance of the nipple, or its shape or how it feels, or a discharge. Breast pain on one side that lasts after a period, a rash and any change in the size, shape or symmetry should be investigated.
Well 'doh!' If something not right, get it checked asap
  • Make Sure You Go To That MammogramIf breast cancer is detected early, it is more treatable. Screening uses mammograms – a type of X-ray – to look inside the breast. All women between 47 and 70 are invited for screening every three years. NHS screening is opt-in after 70, so make sure you get in touch with your local unit to make an appointment: nhs.uk/breastscreening.
Um yes. Its a great tool for finding breast cancer before it gets really big and ug

I think I will be forced to blog about the rest of the article tomorrow maybe. 47 is way too late to start mammograms. My maternal aunt was diagnosed at 76 with breast cancer....  Grrr.

But in the meantime. Be savvy. Savvy is almost like being cool.