A Rerun: Helping People With Cancer

I know this is a popular subject with people with cancer - how and how not to help them. Some people are idiots. I can tell you story after story about ones I have met along the way.

• You aren't going to get cancer by mentioning the word 'cancer'. Seriously? Its an ugly word but its not an obscenity that will cause someone to pass out. You can't ignore the elephant in the room. Ask how their treatment is going, how they are feeling (but not that vague, polite 'how are you today?' bullshit). 
• Never tell them about your cousin's neighbor's dog walker's hair dresser's sister's cancer treatment. You are not a doctor. It probably wasn't the same type of cancer, and even if it was, everyone's cancer is different. You do not want someone to start wondering about their treatment plan - or to think about how stupid you just sounded.
• No, they probably are not about to die so don't ask them 'how long do they have?'. I find that one pretty damn rude if you ask me. And people have asked me that. I probably gave them some gaping look and meant to say 'about another 50 years'.
• Don't be shy. You aren't to get cancer by being in the same room with them, shopping for them, eating a meal together. If you want to help them, you need to go see them and talk to them. Call first and ask 'I'm going to the grocery store, can I get anything for you?' or 'can I drive your kids to school for you tomorrow or take you to a doctor appointment?' 'Can I bring you a casserole for your family to eat later this week?' If you say, how can I help, they may not be sure what to say. You can do their laundry, clean their house, mow their lawn. 
• Be smart. Someone in cancer treatment probably has limited energy so going to the late movie, a museum where you are on your feet or a shopping spree at the mall are probably not going to work. Nor are going out for drinks or bar hopping. Or a 40 mile bike ride. Or surfing. Or mountain climbing.... I can go on. Ask them do they want to get out and do something and let them tell you what they would like to do. 
• Be respectful of them and their time. They may or may not be feeling very well. If you are visiting them and they appear to be either trying to stay awake or not run to the bathroom, it's time for you to leave. When you arrive, ask them if they are up for a visit or just drop off what you brought and leave. I know I would try to be polite with visitors and sometimes I really just needed to sleep and not throw up.
• Do not visit anyone who is an inpatient in a hospital unless they tell you they can. People in hospitals are usually pretty sick, have not gotten enough sleep (because you can never sleep in a hospital), and look like crap because they are in bed, or are bored to tears. Boredom welcomes visitors; pain, lack of sleep, and looking/feeling like crap hate visitors. Call first and ask what you can bring. Do not just show up at a patient's room EVER!

I think that covers most of my irritations. Yes I have cancer. No I am not going to die anytime soon. I would love it if someone would weed my garden (my husband has a problem telling weeds and plants apart). I like visitors who call first. If I get tired, I will kick you out. Thanks for asking.

Pain and Suffering

Yesterday was not a good day. Some how I did too much (who me) and ran out of steam by the end of the day. And I got some bad news.

First off, even though its been over a week since I fell, I am still not right. I run out of steam too soon and end up feeling a bit 'off' each day. I did ask Dr Google about concussion recovery and found out it usually takes a week or more to fully recover and if you are older or have health issues, it can take longer. Drat.

I want that magic wand to make me better as always.

Second, I called a friend yesterday to see how she was doing. Her husband was diagnosed with stage IV colon cancer nearly seven years ago. He went into hospice just over a week ago. I have such poor timing. I called to see how she was doing and her daughter and step daughters. Then I found out he had died the night before. I felt like a heel. I had no idea.

I will send a card and go to the  wake and funeral. I feel awful I called and didn't know.

I am also sad. They were together a long time and married for ten years. Now my friend is a widow. She had retired early this year so they could spend time together.

Cancer sucks.

I'm Losing My Friends

Right now I have two friends in hospice care. One I have known for only about six months but we have gotten pretty close. She was in my knitting group and when I met her she was on palliative care only for pancreatic and other cancers that she has been treated for over 20 years. She is on hospice care at home and no longer goes to knitting. We have talked on the phone and skyped regularly over the past four weeks but it is unclear how much longer this will go on.

The other friend is the husband of a very old friend (friends for more than 40 years) and has been treated for stage IV colon cancer for nearly seven years. His disease has now progressed so that he is fairly 'out of it' and is in hospice care. I hope to get to see them both this weekend but am not sure due to my health. If you are incoherent and in hospice care, how long can you last?

It is hard enough to deal with one friend in hospice without having a second one to cope with as well. I am close to them both and will go to both their funerals.

Cancer sucks.

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.

More faces of cancer

There are more faces of cancer. First is the lovely story of this young woman who got married before both her parents died of cancer. They made it to walk her down the aisle before dying. The young woman started taking their pictures as they went through cancer treatmetn together. An amazing series.

Cancer has too many faces. I wish it would go away.

Cancer fears

Normal non cancer people have normal fears - being bitten by a dog, speaking in public, getting the flu, spiders, snakes black cats, etc. If you add cancer people to the mix, their fears include cancer spread, cancer return, and another cancer diagnosis, on top of all the other normal fears.

With cancer, we need to learn to balance our cancer fears and not obsess over them. That is the hardest thing about a cancer diagnosis. Since my first cancer diagnosis, I have always had the thoughts of 'what if' cancer came back, spread, etc. What would I do? What would I want from my treatment?

And then it happened, I did get a second cancer diagnosis. That was the triple loop corkscrew roller coaster ride. And it took a long time to get the fears under control. I learned a lot in that time period.

First, I had to stop obsessing about cancer all the time. I couldn't live in cancerland 24/7. I had to get out of cancerland and be a normal person who went to work, grocery shopping, getting together with friends, spending time with my husband.

Second, I had to learn to let cancer have its place in my life. I couldn't cut it out completely because it had to be there so I can get the follow care I will need for the rest of my life.

Third, I had to learn to stop feeding my fears with the 'what if' moments and letting the fears take over my life again. I don't need the work/life balance, I need a cancer/life balance. Yes, cancer may come back again but it might not either. I could find a snake while weeding in the garden too.

Right to choose

Would you move to Oregon if necessary? I would.

I hope that you do not disagree with this woman's choices but I completely support her. She has a very unfortunate medical diagnosis at age 29 and has taken steps to live her life as best she can. She has gotten the medication she needs to die with dignity as she wants. She isn't rushing to use it but is much more relaxed knowing that when the time comes, she will be able to choose.


I am a firm believer in DNR's and palliative care. But sometimes I think it doesn't go far enough. First of all with a DNR, someone else is making the decision on your body that it is time to stop treating you. Second of all, what if the DNR happened after months of agony? Instead of at the beginning of all the agony. Palliative care is wonderful but it can only do so much. What if your body develops a resistance to all the pain medications? Where would that leave you?

I would move to Oregon in a heartbeat if necessary.

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:

• Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
• The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
• The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.

We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

That battle thing

Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.

There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.

If you look at Dictionary.com we get:

bat·tle¹ [bat-l] noun, verb, bat·tled, bat·tling.

noun

1. a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
2. participation in such hostile encounters or engagements: wounds received in battle.
3. a fight between two persons or animals: ordering a trial by battle to settle the dispute.
4. any conflict or struggle: a battle for control of the Senate.
5. Archaic. a battalion.

Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer. 

If one has cancer or other ailments, they are not participating in hostile encounters or engagements. 

If one has cancer or other ailments, they are not fighting with another person or animal.

Having cancer is not a conflict or struggle, its an ailment that is treated. 

And cancer has nothing to do with a battalion, even in old English.

Maybe because someone thought they made them stronger if they were battling?

Maybe because someone thought a battle or war is a better image than a person?

Maybe because someone DIDN'T think?

Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war.  Roger Ebert did not battle anything, he also was a person living with medical ailments as well.

I need to widen my interests

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

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

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

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

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

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

Recovering after a very long week

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

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

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

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

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

That's just the physical side.

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

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

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

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

Big words to be translated

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

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

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

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

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

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

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

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

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

 The next paragraph is a little deep:

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

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

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

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

You can't talk the talk, if you haven't walked the walk.

While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.

A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.

One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.

I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.

Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:

"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."

So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

This is a blog about cancer after all

I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time.

But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.

I have no new cancer research to write about now. I can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.