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.

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.....

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.

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....

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.

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.

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.

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.

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.

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. 

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

• Breast Cancer Research Foundation - a grade of A+, 90% of their funds go to programs (not overhead), and it costs them $7 to raise $100.
• National Breast Cancer Coalition Fund - A, 83%, $13
• Breast Cancer Prevention Partners (Formerly Breast Cancer Fund) - A-, 77%, $13
• Also recommended:
• Cancer Research Institute
• Memorial Sloan Kettering Cancer Center
• Prevent Cancer Foundation 
• Entertainment Industry Foundation's Stand Up To Cancer. 

Charity Navigator

• Breast Cancer Foundation  - received the highest rating of four stars. 
• National Breast Cancer Coalition Fund - three stars
• Breast Cancer Prevention Partners - three stars
• National Breast Cancer Foundation  - four stars, score 96/100, 82.9% spent on program expenses
• Dr. Susan Love Research Foundation - four stars, 92/100, 81.9%
• Lynn Sage Cancer Research Foundation  - four stars, 90.9/100, 92.1%
• Bay Area Cancer Connections - four stars
• It's the Journey - four stars
• Casting for Recovery - four stars
• Sharsheret - four stars
• BreastCancer.org - four stars
• Prevent Cancer Foundation - four stars
• Living Beyond Breast Cancer - four stars
• American Italian Cancer Foundation - four stars

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.  

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.

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.

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.

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.""

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.

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.

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?

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.

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.

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.

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. 

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.

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.