In Shock

We moved to our new neighborhood last January. January in New England is not a time when people are outside much (unless they are playing in the snow somewhere). People are not outside in their yards and being social. All socializing is inside.

We met one family of neighbors a few weeks afterwards because we were outside dealing with snow and ice. We then met more neighbors as the weather got warmer. Because of the street's turns, we have one neighbor directly across the street and one next door. Everyone else is around a corner someplace. I met the neighbor across the street, B, in April or so. We talked gardening. She works at a local school and was very nice. I met her son and grandson. She was planning on working a few more years and then retiring to enjoy her gardens.

We discussed gardening issues over the spring and early summer. She was looking forward to a trip to her home country with some family members in the summer. Then we went away for a few weeks and she was away for a few weeks. I hadn't talked to her since July or so. I just figured she was busy and I was busy.

Last week I noticed lots of cars visiting her. Her family would come over from time to time, mostly on weekends. But there were never that many cars for that many days. It was very out of place. Friday it looked like a big garden party was going on. One of the other neighbors told me that the mailman, delivering a package, told her that there was lots of crying and hugging going on.

Saturday we went to the beach for the day. Sunday one of my other neighbors asked if I knew what was going on because on Saturday she saw a hearse and a procession leaving the house. (She couldn't stop because her child had a medical emergency she was dealing with.) No one knew what was going on.

I thought about stopping by on Sunday to make sure all was okay. All the neighbors were concerned. No one knew anything. I was asked by several people.

Yesterday after the gym, I saw people sitting in the garden. I went over to ask. It turned out that was two of her children. B had felt sick on Tuesday and went to the hospital. She died Wednesday morning in the hospital. She was gone. Everyone is stunned.

It turns out B developed a horribly aggressive, very rare form of lymphoma and that was it. Nothing could be done. Its just horrible. I can picture her in my mind but I will never see her again.

I had the wrong question

I was going to ask my rheumatologist if my rheumatoid was in remission. That was the wrong question to ask.

I should have been more concerned about joint erosion and disease progression.

Damn.

So I got to get x-rays and ultrasounds of my hands, wrists, ankles, and feet. I was tired by the end of the x-ray session. I am not good at standing around these days. Particularly while standing in a specific position and not moving while they take issues. All of my feet and ankles had to be weight bearing. That was Tuesday.

Yesterday I went for an ultrasound of my right hand and wrist. I was looking at the images on the screen. I asked the tech how she could tell what was what - the answer was a lot of training. I said the image of my wrist looked like the ocean in an old print of an ocean with a ship.... She agreed.

I will get the results at my next appointment. And then we will discuss additional treatment options. The problem is that the TNF (tumor necrosing factor) which is some how part of the new fancy biologic treatment options. So my rheumatologist has to talk to my oncologist first.

Low risk 'cancers'

So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.

So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....

So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment?  "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."

I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.

Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.

An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.

I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.

Times have changed

I am not a Mad Men fan. It just has never had much appeal. We are now facing the last episode this coming Sunday and then it will go off the air. I have been intrigued about the thought of so accurate representation of life in the mid-late 1960's. But I have never bothered to watch it.

I found something online yesterday which talked about last Sunday's episode where Betty goes to the doctor after a fall for rib pain only to learn she has advanced lung cancer. But the doctor won't tell her until her husband arrives. The Huffington Post reviewed the show and spoke to the CMO of the ACS:

"According to Dr. Otis Brawley, chief medical officer of the American Cancer Society, the portrayal of Betty's care was almost entirely spot-on: A woman diagnosed with lung cancer in 1970 would have been given the patronizing care that Betty received. Though not a fan of the show, Brawley watched the episode and explained it was par for the course back when “cancer” was a generally whispered or unspoken word, and the medical community was generally patronizing to women as well as cancer patients.

“I can tell you that there was misogyny in medicine, and I can tell you there was actually a time in the United States when it was common not to tell people they had cancer, but they told the family,” Brawley told The Huffington Post. "I can tell you that there was a time when many people did not even say the word ‘cancer’ or simply used the words ‘Big C.’""

He adds that the reason it was so patronizing was that there was little if anything that could be done. At that time, there were a few chemotherapy options but lots of discussion on if they even were helpful.

I remember when Betty Ford announced publicly she had breast cancer. She and Shirley Temple Black were the first to make this announcement publicly and helped break down the barriers to make cancer spoken, not whispered. Less than a decade after that, I had my first cancer diagnosis in 1981. A few years ago, I met a woman who was diagnosed with thyroid cancer around 1980, and her parents never even told her about the diagnosis.

I am so glad times have changed. We may not have a cure for cancer but we can at least talk about it.

PS extra points to everyone who can watch that gif for more than a couple repetitions without getting the beginnings of a headache or getting dizzy.

The next emperor movie

I am not a huge movie fan. I am more of a Lifetime movie fan. If I can knit and watch it or be online and watch it I am fine. My husband and I probably get to the movies about once a year. But now I have a movie to watch.

A few years ago, I read most of "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee. It was very interesting and covers how cancer was recognized and treated for centuries, showing the progression of advancements.

Yesterday I discovered that it will be a PBS six hour documentary, starting March 31.


I will get my Tivo set up so I can watch it.

I posted this on Facebook and someone commented that they were not sure they could watch it. I promise you if you watch the trailer above, you will see it is about progress and not about sadness.  You can probably get the book from your local library at this point as well.

Reconnecting after cancer

You go through life, you make friends and then life changes and you may lose touch. Its just a way of life, even if you are on Facebook,Instagram, Twitter, and all the other social media sites, every millisecond. It just happens. Sometimes you get a chance to get back in touch. Sometimes you don't.

But then when cancer hits, and you get back in touch, its how you handle it.

Last year I reconnected with a friend from high school. We went out for a drink with another friend from high school. I chose not to share my cancer stories with her. It just didn't feel right. I didn't want to have that discussion at that time. I blogged about it then how I felt like a wimp because I didn't share. I have been burned before and just didn't want to go through that again.

Yesterday on Facebook I reconnected with an old roommate who I shared a house with two years after college. When she moved out, she and her fiance were planning a wedding and getting a house. We lost touch. But yesterday, she commented on something on my FB timeline referencing my health issues. So I sent her a PM and sent her to my blog to read about it.

Maybe it was because she had figured out my health wasn't stellar that I was more inclined to send her to my blog so she could see what my life is really like. Maybe it was because I know her personality and she wouldn't swoop down with those platitudes that would make her feel good but do nothing for me. Maybe it was because I at the other end of the internet and I could share with out being face to face. Maybe because I was really jealous of her FB picture of her sitting on a motorcycle.

I don't know about how I feel on this. Cancer can be a conversation killer to say the least. And too many times I have been burned and lost friends as a result. Wimpiness may still prevail here. I'm really on the fence with how I feel about this.