I Forgot To Keep Quiet

Everytime you go to the doctor they ask if you have fallen recently. Do you know why they ask you this? Its not because they want to check if you have skinned your knees or ask if you want an ice pack. They want to know if you are at risk of injuring yourself by falling. Or really are you a fall risk.... Which is very bad.

But you say its only a little yellow bracelet. But no it's not. It means they label you as a fall risk until you can balance on your toes on a paddleboard, a million hours of PT, or something. Its hard to get rid of that label on your medical chart.

Yesterday afternoon, I ran into a particularly slippery section of grass in our yard and fell. I didn't land on my bad knee (the one slated for arthroscopic surgery because it keeps locking up) but on my slightly less bad knee (the one with a torn ACL that can't be operated on). No I am not further damaged other than some sore muscles and jolted body parts.

I had a nicely timed appointment with my knee surgery this morning. I showed up and STUPIDLY told the nurse that I fell on my knee yesterday afternoon. I only did that because I knew they would notice it was swollen.... But I clearly wasn't thinking. I forgot to keep quiet.

The main topic of conversation with the doctor was scheduling arthroscopic knee surgery. I will need crutches for a week or so. I won't be a fall risk (note sarcasm) while on crutches. I will then be teetering around, but not a fall risk.

How Did I Get So Lucky?

Somehow I got the 'lucky' card in the health department. Somewhere in my genes I ended up with the crapshoot of everything. I do know I have my mother's bad back and Rheumatoid Arthritis but I also got my father's hair (which is still not completely gray at 89). But the rest of it, I have no idea.

So I always look for hints of how I could have gotten these lovely ailments. Then  find an article that asks 'Can Trauma Cause Fibromyalgia?' But I am not so sure I understand how it would help me. They list:

"The traumatic experiences that are usually correlated with fibromyalgia are the following:

• Certain types of viruses like Hepatitis C and HIV
• Childhood separation from parents that lasts more than six months.
• Emotional Trauma
• Living through a war"

I have not had Hep C or HIV. I was not separated from my parents for more than six months as a child. I have not personally lived through a war. However maybe emotional trauma could be from the PTSD of cancer twice could be a cause?

Maybe I am clutching at straws here, as I often do, but wouldn't it be nice to know how I got so lucky. Its a lot of frustration. And aggravation.

Doctoring Between The Lines

I don't know about anyone else but I have a primary care and then an oncologist, breast surgeon, endocrinologist, rheumatologist, pain management, orthopedic surgeon, meds therapist, social worker therapist, dentist, and periodontist. They all have their own specialties and focuses on specific portions of my body. But I swear they like to color outside the lines.

Last week my rheumatologist started commenting on my regimen to control my acid reflux from my hiatal hernia. How does heart burn relate to my rheumatoid? And why did I need to explain it to her?

In the past six months my pain management doctor has been messing with some of my meds that were prescribed by my meds therapist for depression. There is some logic there because the same drugs are used to treat to nerve pain and depression but when one drug gets changed, then others need to be changed. And my meds therapist didn't like the most recent change my pain management doctor made and said she wouldn't prescribe that combination. This left me in the position of having to explain his most recent thinking.

My primary care once messaged my endocrinologist to question my thyroid levels which resulted in me getting a snotty letter from my endo a few weeks later and no changes. Thanks....

I don't mind if my doctors talk to each other about me. That's fine. But I don't want to be put in the middle. Please talk to each other and say we both like this change and take me out of the hot seat. Thanks.

Digesting

One of the big reasons I started my blog in 2007 was to allow time to digest news as I received it through my breast cancer diagnosis and treatment. I also didn't want to have to repeat the same news over and over in replies to both phone calls and emails. This blog allowed me time to digest any news before retelling it here. I needed that time to digest my latest news. To this day I still do.

Any medical news I get now, I digest it and maybe discuss it with my husband before retelling it. I need that time. I don't know how anyone else deals with their medical news but this is what I do.

I can give many examples of this but as some of them I am still digesting so I am not ready to discuss. All I know is medical news needs time to digest.

Frustration

In the world of continual medical research and advancements - that every day allow us to get improved treatments for ailments - I feel very frustrated. No I am not on top of all research that is going on so I am sure there is a lot that I am not aware of. But from a patient's point of view it can get very frustrating.

For example, yesterday I read something about how a century old vaccine for something else is being tested to see if it would work as a vaccine for fibromyalgia. That sounds  great. A way to prevent others from getting fibro - which is no fun.

Ahem, but where is the cure? Just because they can prevent someone from getting something they still need a cure. A vaccine only reduces one's risk of getting the ailment and not preventing it 100%. Look at how well the Shingles vaccine works? How many people get the vaccine but still get shingles? I don't know the number but I know it exists - like the flu vaccine.

So where does this leave us patients with ailments? Frustrated. How long are we supposed to wait for the cure? We have the 40+ year 'War on Cancer' and the Cancer Moonshot. And we are still waiting.

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.

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.

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.

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.

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.

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.....

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.

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.