Tuesday, August 22, 2017

New Research Says

How many times when you are talking to your doctor have you heard them say 'new research says...' or 'recent studies have shown....'? I get it all the time. And I am not sure I like it. Or how it makes me feel...

I realize being a doctor or other medical professional takes a lot of work and study just to get there and then they need to constantly work at staying up to date so of course they are reading research and following studies. But when they shove it in my face by saying that the new research told them this, I feel like they aren't practicing medicine but reading research.

I realize a lot of new information comes out for doctors through medical research - that's how they learn more. But I realize research isn't everything. I think of as 'flat'. A research project is done with a goal to prove or disprove something and it is done with a certain pool of people that meet specific criteria. I have never been eligible for a single research project (a/k/a clinical trial) because my medical background is too complicated. It doesn't reflect the real world where people may have multiple ailments, allergies, genetic make up, etc. Doesn't all medical research always end with 'more research is needed'?

A medical professional needs to keep up on the latest research but they also need to learn how it works in the real world with real patients. We are people with real ailments. I don't want statistics or research quoted to me. I want real medical advice which incorporates the research and my medical history and needs.

Monday, August 21, 2017

Ailments and Their Add-ons

You get one ailment, and it always seems to bring along its 'friends'. A few examples are cancer with chemotherapy causes digestive issues and temporary baldness. It can sometimes also cause long term cardiac issues - which can eventually kill you. With rheumatoid arthritis you can get things like Sjogren's Syndrome which causes dry eyes and other fun things. A few examples are:

"... [RA] inflammation can result in conditions affecting skin, heart, lung, eyes, mental health, etc. Conditions like osteoporosis, cataracts, depression, cancers, etc. are more common. And add to that infection based conditions like influenza, pneumonia, shingles, etc. and you can see that only attending to RA is a recipe for mismanagement of the disease." 

The technical term for these little 'buddy' ailments are 'co-morbidities' - a nice fun word. I have other ailments that cause more problems of a different kind, not co-morbidities but aggravating nonetheless. My back problems are magnified by my bad knees. If I limp because of one of my knees, I'm straining my back causes more pain. So do I ignore my knee pain, not limp to prevent my back pain?

My main goal (besides finding that magic wand that will cure me) is not to become a hypochondriac and rush to the doctor at every new pain. I take every little ache and pain as it comes. I ask my doctors to make sure what I am feeling is a normal part of my ailments then I grit my teeth and go throughout my day.


Sunday, August 20, 2017

Cancer Discrimination and Bias

We live in a society full of bias which leads to racism, discrimination, fear and hatred. The media recently has reflected this with headlines full of racism, bias, discrimination, alt-right vs alt-left, protests, anti-protests, riots, deaths, fear, hatred and more. But it reminds me that there is bias, fear, and discrimination for those of us with cancer.

We are born one way and learn about bias, fear, and discrimination based on where we start. With a cancer diagnosis, all of this is turned upside down and we learn about more bias, fear and discrimination based on that single word 'cancer'.

First, let me say times are changing and it is getting better for those of us with cancer. I met a young woman once who was diagnosed with thyroid cancer at age 17 about 1980s. Her parents were embarrassed that their family member (daughter) had cancer and never told her and never allowed he to have the appropriate follow up treatment, radioactive iodine. She has had multiple recurrences since. Times are certainly better but not perfect, as seen in today's headlines.

For those of us with cancer, we face these issues all the time:

Fear: how many of you have been avoided after your cancer diagnosis? All? I think so. Those are the 'friends' who are scared cancer is 'catching'. Or they do not know how to react to someone with cancer.

Discrimination: Don't tell your current or any potential boss you have cancer or you will face discrimination somewhere along the line. "She's a perfect candidate, but with her health will she be able to do the job long term? She will probably need a lot of time off for doctor appointments." This is illegal but it happens. Its not shouted but whispered. And all it takes is one person to think this who looks at your resume to put it in the discard pile to seal your fate.

Bias: You are sick so obviously cannot be expected to be in with the 'cool kids' any more. You are in with the dweebs at the back of the class again. Your social fate is also doomed. And those who welcome you are doing so with phony smiles over their secret fears.

With our cancer diagnoses under our belts, we learn who are friends are and go forward with them to face the fear, discrimination, and bias that is now in our lives forever. With big smiles on our faces.

Saturday, August 19, 2017

All I Wanted Was Some Sleep

Sleep and rest are very important to me. I can't tell you how much. But if I don't get enough my inner pit bull/space alien shows up and makes everyone unhappy.

Yesterday I was very tired by the time I got home. I am still recovering from my travels where I was definitely in the 'weeds' on sleep and rest as well as the stress of late plane flights and time zone differences. I did sleep in a bit and got caught up on stuff at home before going to the gym. By the time I got home at 330 (and reset all the clocks after a (damn) power outage), I took a shower and put on my pajamas. I was going to go to bed early. I ditched cooking dinner and promoted Chinese food delivered as a better option.

I did go to bed early. I read in bed for a bit before turning off the lights. My husband came in a few hours later and several times started muttering in his sleep about 'evacuations'. I kept replying 'there are no evacuations, go back to sleep'.

Then the cats started, actually they started as soon as I got into bed. We have two: Boots, the 'good' kitty; and Evil Kitty, the not so nice one. Boots can be needy especially since we were gone for so long. He comes and meows. He jumps on the bed. He kneads his paws into me. I walks around on me and then settles his big heavy body however he is comfortable and squishes me while he purrs.

Evil Kitty meows just like Boots, but with a slightly different tone. When Boots comes in, Evil Kitty is sure to follow. He wants attention. He had an 'unfortunate incident' before our vacation which included a 4 cm gash down to the muscle and several layers of stitches and the cone of shame for two weeks. This has made him very needy these days (but also delighted to go out and run around the yard at full speed now that he is allowed out again). He comes in and finds me so he can meow when he feels neglected.

Both cats want me to come out and play - or feed them treats or play with the stupid feather on a string or let them out (even though it was raining and dark).

When I went to bed, I thought we would be fine with the windows open and the ceiling fan on as it was supposed to cool off. That was a bad idea so at one point I got up and shut the windows and turned on the AC so I had hopes for sleeping.

Let me just say my sleep was probably interrupted a more than dozen times - once for AC, several for 'evacuations', multiple for Boots' 'Meow', and many for Evil Kitty's 'meow'. I gave up at 630 this morning and let insisted the damn cats go out. I made coffee and started blogging to rid myself of frustrations. My husband woke up and when I asked he said 'he sleep pretty well'.

I am going back to bed and leaving them all to their own devices until I am rested enough. That could be on Tuesday.

Friday, August 18, 2017

What About Our Brains?

So cancer didn't kill us. Our cancer treatment didn't kill us. But our brains no longer function as well as they did before.

At my knitting group at a cancer support center we routinely forget each other's names.... and claim chemo brain.

I think there are several causes of chemo brain. The biggest and most important one is the so called 'cognitive dysfunction' as a result of the lovely chemicals they pour into us during treatment. There is a lot of information on this as well as the awareness (finally) of the need to do something about this.

I strongly believe that another cause of chemobrain is the stress and ensuing PTSD that causes us to have lapses in our memories as well.

This raises the issue that while a cancer diagnosis and treatment is harsh on our bodies and on our minds, there needs to be a concerted effort (and more research) on how to improve post treatment care and how to prevent more issues for patients.

From a patient's point of view, a cancer diagnosis should not be a life changing event. I can be a life affecting event but it should not alter you forever - either emotionally or physically.

There are many ailments out there without cures but then why is 'cancer' the only word which is so scary? We need to take the fear out cancer and the injuries out of its treatment. This would help our brains a great deal.

Thursday, August 17, 2017

Breaking In A New Doctor

I was disappointed when my endocrinologist left for a new hospital. But I can understand that as the mother of two small children she needed a shorter commute to be able to achieve a good work/life balance. However, that meant I needed a new endocrinologist. I met him yesterday.

Before I met my endocrinologist after I had an appointment with my rheumatologist who is a nice woman in her late 50s/early 60s who has been a doctor for many years. In contrast my endocrinologist joined the hospital in early July after his residency. This means he is a kid, literally. I think I have clothes older than he is.

When I met him, my first sentence was "I have a complicated medical history". At least he had read parts of it but that lead to a big discussion about how I used to have an endocrinologist and then didn't and then finally did again which lead to evil ultrasounds that drove me crazy because they were supposed to be clean but weren't for a couple of years.

He didn't break down and cry when looking at my medical history. We made a deal. I will come back and see him in December after I get more thyroid blood work done. Then every six months I will have more blood work done and I will see him once a year. And I only will have another ultrasound if my thyroid levels go up which would signal a recurrence.

That was a good start. But I wish he would grow up a little bit.....

Wednesday, August 16, 2017

A Big Break

So I have mostly been off line since the end of July. I stayed in one house which had no wifi and iffy cell phone service at best. Then I went on vacation with my husband and stayed in more hotels with iffy wifi and sometimes cell service. You know the two-three bar places where if the wind is blowing in the right direction you can actually connect. The most important thing I used my phone for was for directions and as a back up we had a paper map.

This meant I was really behind on emails by the time I got home. I also hadn't been on facebook or here on my blog. And I didn't get a lot of phone calls or messages. Best of all I could pretend I was a healthy person and I DIDN'T HAVE A SINGLE DOCTOR APPOINTMENT. It was awesome.

I recommend it for everyone. I couldn't remember what day of the week it was, never mind the date. I went into a store last week. I looked at the hours on the door and it said 'open 9-1' and it was 2:30. But then some people walked out of the store so I figured the sign was wrong. When I went in, I asked the woman if she was still open despite the sign on the door. Her response was 'its Friday, not Saturday'. That was great.

I need more of that in my life. I didn't have to run from the gym to a doctor appointment to anything else. I didn't have to worry about anything. The two of us had a blast - except for the day it was clear we had spent too much time in the car together so that there was a very quiet period for the better part of the day.

My non-doctor prescription is that everyone take a disconnected vacation.

Friday, August 4, 2017

Dumb Things Cancer People Hear

I know I am supposed to be away but this one resonates... Some people are just plain stupid. Read it here.

Saturday, July 29, 2017

The Great Off Line Experiment

In the next few weeks I will do some travelling. During that time I will have limited access to the internet. I will have my phone and will mostly be where phones work. But I may not have access to the holy grail of wifi for good portions of it.

Personally I do not think I will have that much of a problem with being off line. I think its healthy to disconnect. I will have things like books (the paper kind), knitting, one of my looms for a portion of it, and a crossword puzzle book. There will also be time for things like 'conversation' without any emojis. We may or may not have TV either. But we will have swimming in a lake, boating on said lake, napping, reading, and other congenial activities. We will also have the ability to ignore all political news - which might be the best part.

I will have the next five days of no technology. Then I will be home for a couple of days. Then we will depart for 10 days of limited technology.

I realize there will be some others who might freak out at the thought of disconnecting. Those people are probably in the most need of unplugging. I used to work with a guy who would go to the beach for a vacation with his wife and four kids and then wonder why his wife would get mad at him when he made work calls from his cell phone while on the beach.

I wonder how many others can unplug for several days at a time without going crazy. So put down your phones, turn off the TV, get outside and breath some fresh air while you figure out how to fill your time.

Friday, July 28, 2017

Surgical Drains

I think everyone who has ever had a surgical drain can only think about them with a shudder because they are so awful. I hated mine. It was awful. And full of really nasty looking stuff. When they took it out, it hurt so much that the surgeon even apologized several times after.

We have two cats. Boots is the good cat. He likes to cuddle. He likes to have his ears scratched. He likes to sleep on me at night. He wants attention. He is very nice.

Then there is ZDpot a/k/a Evil Kitty. Why do we call him Evil Kitty (or EK for short)? Because he is the food stealer, fight starter, etc. And he basically does what he damn well pleases - he refuses to listen to reason.
Evil Kitty got out this week. Well he is an outdoor cat and he failed to come home at night, which is not that unusual. What is unusual is that he failed to come home for breakfast - this is the cat who never passes up food. I was worried. I asked the neighbors. He finally wandered in 48 hours later. With a big gash on his right hip. And some other wear and tear. I took him to the vet. They were even impressed with the size of his gash. He is having surgery this afternoon. He will probably get a surgical drain, and a collar of shame.

This will be so much fun. He is not the most cooperative cat in the world. I cannot see how he will deal with a surgical drain. This is not going to be fun. I am sure it will be even less fun than the surgical drain I had.

Thursday, July 27, 2017

Cancer Spans Everything

Cancer brings us together and rips us apart. Cancer knows no boundaries - it crosses race, age, sex, families, and even politics.

Cancer can bring people together. To those with cancer, it is an instant bond to others with the disease. You can walk into a chemo waiting room, a support group, a fundraiser, or whatever. All of us with cancer instantly have something to talk about and unit together. It can join a family who is faced with the impending death of a loved one to repair broken or damaged family bonds.

Cancer can also rip us apart. For those selfish or inconsiderate enough not to care about others, they do not notice that someone is ill and in treatment. It can rip family members apart. I know several couples who split up when a cancer diagnosis hit their family simply because one of them could not handle the stress on their diagnosis.

However, cancer is not a nice thing. It takes people away from their friends and family too soon. It causes all kinds of pain and suffering to the patient.

But we need to remember it can bring us together. We need to remember this. John McCain, as Ted Kennedy did earlier, got up and said its time to work together. What does it take for us to remember cancer has no boundaries.

Monday, July 24, 2017

How Soon To Start Treatment?

I never realized how important starting cancer treatment quickly was. I remember my surgeon telling me at one point I had plenty of time to wait before making decisions for my treatment. I guess that wasn't true.

There is a new study (because we always need new studies) to focus on the TTI (Time to Treatment Initiation) from date of diagnosis. As that increases, the cancer death rates increase as well. How nice. So don't wait, start NOW!

Research by the Cleveland Clinic showed a increase from 21 to 29 days showed increased mortality.

"Longer delays between diagnosis and initial treatment were associated with worsened overall survival for stages I and II breast, lung, renal and pancreas cancers, and stage II colorectal cancers, with increased risk of mortality of 1.2 percent to 3.2 percent per week of delay, adjusting for comorbidities and other variables.

Prolonged TTI of greater than six weeks was associated with substantially worsened survival. For example, five-year survival for stage I non-small cell lung cancer was 56 percent for TTI of less than or equal to six weeks, versus 43 percent for TTI greater than six weeks, and for stage I pancreas cancer was 38 percent versus 29 percent, respectively."


If I think back to when I was diagnosed with breast cancer officially at my biopsy on May 31, had my first surgery June 19, my second surgery July 5, and began chemo at the beginning of August. I would assume that the TTI is from May 31 to June 19 which is a whopping 19 days so maybe I was on the safe side.

But what if I had stalled and gone for a second opinion before surgery? That would have pushed it all out for much longer. Maybe its a good thing I didn't wait.

Sunday, July 23, 2017

Mammograms Under or Over Diagnosis?

There has been a long debate, since mammograms were put into use in the early 1980s, if they over or under diagnose breast cancer. Now someone has finally decided to take another look at all this data. There are two main parts to this issue: Are small tumors that would never grow into something 'bad' being over diagnosed and over treated? Are too many other tumors missed in mammograms? This group of researchers examined data from 2001 to 2013 and determined that:

"The results showed that most overdiagnosis occurred in older patients with biologically favorable, slow-growing tumors."

These tumors are ones that will not become problematic 'go bad' for 15-20 years. These do not need treatment..... In addition they revised their thinking on which tumors were going to become 'problematic' (what a sanitary word for cancer diagnosis).  

""Until now, we thought that the lead time, or time until a cancer becomes problematic for a patient, for most breast cancers was about three or four years. This paper shows that lead times vary widely depending on the tumor type. A large portion of aggressive cancers have a lead time of two years or less, whereas another large portion of breast cancers grow so slowly that the lead time is 15 to 20 years,...""

This is new thinking.

"It is important that we educate physicians, patients, and the public on the indolent, slow-growing nature of some breast cancers. This knowledge will allow us to individualize treatment options, provide 'personalized medicine,' and avoid the major harms of overdiagnosis, which can result in overtreatment and the anxiety and fear that a cancer diagnosis causes,..."

So maybe instead of blindly following what we have been told in the past, we look at what is now known.... This is called progress. 

Thursday, July 20, 2017

Determination only

Yesterday, I was talking to our cat feeder and her husband as they were walking their extremely large, muscled dogs past our house. We need to catch up on the latest cat issues (they are on a diet) before we leave on vacation.

While we were chatting, their dogs were looking at our lawn very intently because they know we have cats who are often outside. They can't chase them because they are on leashes. One of them is actually scared of the cat they have at home. But they can look. And bark a bit until they are stopped.

Boots is my little tag along. If he can find me, he will follow me. He loves me because I feed him, and because I found him when he was lost outside when we moved last year in January. And I stick up for him when Evil Kitty picks on him.

We were chatting and Boots had to follow me. Using sheer determination he walked up the hill until he was within ten feet of me and two large dogs. He just gave them a little stare down and then, while ignoring them, focused on me until the conversation ended. Once the cat sitter and her husband left with the dogs, he waited patiently for me to walk back to the house in hopes of a snack. He doesn't like dogs but its more important to him that he hangs out with me at all times.


Sometimes you have to pull yourself through life with determination only as Boots does. He wants to hang with me and he just ignores the bad part - the damn dogs. I do this too. I use determination only to get through life. I ignore the bad stuff and just push through. I can't let myself worry too much about the bad stuff a doctor might say to me, I am just determination to get through. Then I get to go home and hang out with Boots.

Monday, July 17, 2017

The Most Important Part of My Health

Last week my husband has accused me of being cranky several times. My back has been hurting more than it is supposed to (considering all the medications I have to stop that). I have not been in a good mood.

Saturday night I didn't sleep well. I am blaming the (damn) cat for that as he insisted on spending the night out and I got up four times to see if he would come in. My husband tells me that he will be fine when he spends the night out but I know we have coyotes, fisher cats, bobcats, and foxes who would be happy to make a meal of him. And he still doesn't have enough life skills to know about all the potential perils of the great outdoors.

Okay, I got a little side-tracked there.

I hadn't had a lot of sleep last week in general. My body now needs a few nights of at least 10 hours of sleep each day. This doesn't mean lying in bed and taking it easy or napping. It needs 10 straight hours of sleep.

Last night, I went to bed at 9 and fell asleep. Actually I got in bed around 7 because I was tired and read and knitted. My light went out at 9 and I woke up after 7 this morning. I slept through my husband's alarm and morning routine. But I feel great. I really do. I slept well. I feel very rested. I can attempt to be a normal person today (unless I do something stupid like pretend I am a normal person and overdo things).

So the most important part of my health is sleep. Lots of good sleep.

So my non-doctor prescription if you aren't feeling well is to get a good night's sleep.