Doctors As Patients

I think doctor's make the worst patients. A friend's father, she told me, was a doctor but ignored his own cancer symptoms and said he was fine until he wasn't. I have never met a doctor who rushed to be a patient....

But I think the best training for a doctor is to be a patient - particularly a patient of the disease or ailment they treat. This would provide so much more understanding for them.

Here is the story of a British breast cancer surgeon who was diagnosed with breast cancer in 2015 and finally returned to work in 2017. She never expected to face this diagnosis. I don't anyone ever does.

"Doctors face particular challenges when they become patients—challenges that they are rarely prepared for. It is hard to relinquish control and allow others to dictate the treatments that you yourself are used to doling out. It is crushing to know your own prognosis in the starkest terms—a 65 percent chance of surviving for 10 years, in O’Riordan’s case. It is awkward to see your own former patients while you’re being treated: To strike up a chat would break confidentiality."

I would like to disagree here. I don't think it would be awkward to see your own patients while in treatment. I would not expect my doctor to treat me as a patient if I run into them in the store or something. I just say hello as I would with any other person.

"And it is difficult to be cut off from the same supportive forums and networks that other patients use to share experiences and support; if you let slip that you’re a doctor, you become a source of information, rather than a comrade in illness."

I have had doctors and nurses in my support groups. No one in the support group expected them to be any more 'up' on new treatments or provide constant medical advice because that is not what they are there for. They have occasionally filled in on a specific question or answered a question along the lines of 'should I go to the ER for this'. But that's it. In a support group setting, we can't anyone there to provide medical advice. First because they are there for support and second because they have no knowledge of our medical records.

"How much, for example, should she share with her own patients? O’Riordan had blogged regularly about her cancer. She had even done a TEDx talk. But she practices medicine under her maiden name, so few people would make the connection between her online persona and her professional one. Ultimately, she decided to say nothing at first, revealing her experiences only to patients who have completed their treatments and are dealing with the side effects. It helps them, she says, to know that their doctor fully understands how hard it is to live with breast cancer. “You don’t want to compare yourself to other people,” she says. “But when they’re going through that journey, it helps to know that the doctor has, too.”"
I absolutely think she should have felt she could share her diagnosis if she wanted to her patients with the same diagnosis. My best therapist ever had had breast cancer ten or fifteen years before she started seeing me. Because she opened up about this, while we didn't discuss it often, I felt much more comfortable because she 'got me' through her own diagnosis.

I would be very happy if I knew more about some of my doctors. No, I don't want to know everything about them.  But if I knew they had been through what I was being treated for it would greatly increase my comfort level. (Why is doctor patient confidentiality only one way? That's a question for another day blog post.) This especially holds true for specialists in my opinion.

Think about it - if you knew your gall bladder surgeon had had the same surgery as he was treating you. Wouldn't your comfort level with him go up a few notches? He survived, so can you.

Finally, I would like to state that I do not think that this surgeon was ready to return to work. If her brain was compromised by chemotherapy to the point she could not remember instrument names, I would not want her operating on me. Part of healing after cancer, or other ailments, is getting back to the same physical and mental states.

"Chemotherapy can famously fog the brain for years after the treatments end, so she still finds it hard to concentrate for more than half a day. When she returned to the operating room, she performed all the old procedures flawlessly, but at one point, she forgot the names of her instruments. “I was closing the skin and needed forceps to hold the tissue, but I couldn’t remember what they were called,” she says. “I was doing the action with my hand, and thankfully, with a good scrub nurse, you don’t need to ask.”"
My opinion is that just because she is a doctor it doesn't mean she should give herself clearance to go back to work. She was not able to work independently and needed to lean on her support staff to that extent.

In addition I will go read her blog to learn more about her. She has completed a school of hard knocks.

Because Of Your Medical History....

Once you get cancer or any other 'nasty' medical ailment, this little phrase follows you for the rest of your life 'because of your medical history...'. If you have this phrase following you around, you are lucky when you are not sent for more tests or additional follow appointments start filling your calendar.

As a child I was not the one (sister) who had ear infections non-stop or the one (brother) that went running around into and over and under things resulting into many minor injuries requiring stitches, etc. I was the reasonably healthy one, except for a few colds here and there.

Boom, at age 19, I was diagnosed with thyroid cancer and that magic little phrase started following me around. I never had a normal doctor appointment. Even if it wasn't discussed, that cancer history was still lurking in the air between the doctor and I.

It followed me for decades. Until I added another cancer diagnosis and then it followed even closer. And was probably written like this 'because of your medical history...'. Two cancer diagnoses before fifty and all the red flags start jumping up to the doctors. Do you have a genetic abnormality? Did you wade in toxic waste as a child or live next to a smelly factory? It didn't matter why, all it meant was I went to more doctor appointments than anyone I know.

Since then with a bad back (three different places), rheumatoid, and fibromyalgia, now my pet phrase is written like this 'because of your medical history...'. It is right on my heels every day. I now need my medical history to the point that I don't even dare to go to another hospital. It would take too much time to explain my ailments, allergies, and medications to any emergency room triage person. No, I can't print out a list to take with me because it changes too often.

So that little phrase has gone from an annoyance to a necessity. Damn. I wish I was healthy.

Cancer Cure?

No there is not a cancer cure. We need to keep remembering that. We are told by our doctors that there is no evidence of disease or some thing along those lines - which just boils down to "we are not capable of finding it yet". If your doctor tells you that you are cured, please find a new one asap.

In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.

"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."

So as good patients we go to our doctors for years and do what they say. But we know we are not cured.

"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.

Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.

And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."

Five years out are we cured? No we are not. So we stop going to our doctors and promise to come back if anything changes.

And even though we know all of the above, there are still a few more caveats.

"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."

So what do we do? We are supposed to live life as if we are cured. We are supposed to like our new normal. But we are not cured and at this point have no chance of being cured. We can just  be happy with remission free survival and no evidence of disease. But not a cure.

More Bacon Bad News

I learned back in 2016 that bacon is not good for fibromyalgia. That was very sad. Now I have learned that bacon, or other processed meats like sausage, can increase your risk of getting breast cancer significantly.

"From an analysis of more than 260,000 women, researchers found that the risk of breast cancer increased by more than a fifth for those who consumed more than 9 grams of processed meats per day, which is the equivalent of around two sausages per week.

However, the team found no link between red meat intake and the risk of breast cancer."

Well that's good news about red meat. But I would rather have bacon than red meat most of the time. And two sausages or three pieces of bacon is all it takes to increase your risk. 

I am mostly unhappy that yes I can get cancer twice and still have to quit eating some of my favorite foods to help prevent another diagnosis. That's not fair. 

Another Potential Cure And A Stressor

I do not know if I should be elated or frustrated or what. Here is another potential miracle 'cure' for cancer. No, I am not reading the back pages of some magazine but from a very reputable source. I realize these 'breakthroughs' happen all the time but they do cause stress to us cancer people.

I am not sure how much other people realize the amount of stress the constant barrage of potential news telling us about potential cures - with the supposition that it should be positive and provide hope for us. However, there are two problems with this.

The first one is that not all potential 'cures' ever pan out into something real. Second the amount of time to find out if it will actually work - usually more than a decade.  For people diagnosed with late stage cancer often do not have that long to wait. Think about those facts for a moment.

Its like you are chasing a carrot on a stick that keeps on being pulled away from you. Always just out of reach. And flitting away at the last minute. Eternally unavailable. This is incredibly stressful.

I started following all the breast cancer stuff in 2007, a decade ago. Now I am finally seeing some progress from new breakthroughs which were announced then. That was a long time to wait. The only personal benefit I have seen so far is the announcement that I get to stay on Femara (an aromatase inhibitor for probably ten years total). I have seen some other advancements in radiation given differently and for shorter periods of time.

My attitude is to ignore all these advancements. I like the ideas behind  this advancement. But I can't waste time getting hopeful about this one.

"Esculin is a chemical that naturally occurs in the horse chestnut and is beneficial to circulatory health.

Researcher Dr Jan Grimm said: ‘The possibility of developing a topical application from the gel makes this innovation an attractive potential improvement to current techniques of cancer imaging.’"

That is a very short version of the breakthrough. Use the link above to read more. But for me its another carrot on a stick that is held constantly just past my fingertips. I will ignore it until in 20 years it turns into a real advancement to keep my stress level down.

Not My Story To Tell

One important issue when you have cancer or anything else 'yucky' is that well meaning friends and relatives often take it upon themselves to retell your story, with embellishments, to others. Its not their story to tell.

As the patient, you have the right to decide who to tell, what to tell, and when to tell about your ailment. This is one of the big reasons I have a blog. I get to funnel the information and tell what I want after I have a chance to digest it, when I want to tell it.

You might have noticed I do not write about other's health challenges. I might mention someone but I don't tell their story. Its not my story to tell. Its theirs.

This is an important point to remember. You are not entitled to retell all the details of someone else's medical misadventure. Its okay to tell people that someone is coping with their ailment. If the patient has consented, you can tell others how they are doing. But you don't get to tell the blow by blow story of it. And even if they have consented, you are not their PR agent spilling all.

Patient, Yuckyailment, is the one who gets to decide who gets told what amount of information. Being sick is a private matter. So get your nose out of it.

One Last Story on How Life Sucks After Breast Cancer

Okay, maybe I have been in a rut because I have been stuck at home after knee surgery because I can't drive. Or maybe because I have a cold that I am obsessing on crappy lives after cancer. Or maybe the internet gods had their stars align and all these stories ended up on my laptop in the same time period. But I hope this will be the last one for a while.

Here's the story of a young woman who lost both her husband and her sister because of her lengthy cancer treatment.

"“The reality is that probably four out of seven days I’m in bed,” explains the 39-year-old, who lives with her mother at Bundall.

“I’ve had my left hip replaced. My right hip is headed the same way. The pain is excruciating and I’m on some heavy duty pain relief. My lungs have been affected. I had my gall bladder removed last year. I’ve developed cataracts."

Kate Carlyle is a former radio personality from Brisbane Australia. In the past eight years she has gone through two breast cancer diagnoses and a leukemia diagnosis which required a bone marrow transplant. The bone marrow transplant is what cost her a sister - her sister could donate but became pregnant and couldn't donate at the last minute - causing a long term rift which continues today. She was saved by an anonymous European donor.

The stress of her cancer roller coaster cost her her husband. She is not the first to lose a spouse over the stress of cancer diagnosis. But it just makes things suckier. During cancer treatment is you are not at your best to deal with marital issues.

So yes, life after cancer can be very sucky. They don't tell you all this. Yes you can get divorced or have a long term rift with a sibling without involving cancer treatment. But when you are coping with a significant health issue you don't need the other crap.

So as Kate says in the end: "“I love being alive and if that means I have to battle through at times, so be it.”"

Being alive is the most important thing. It is the goal of any cancer treatment - to still be here for all the little things in life - birthdays, anniversaries, marriages, friends, family, change of seasons, butterflies,...

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.

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.

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.

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.

Off To My Primary Care

This morning I go off to my primary care for my annual physical. Although there are lingering thoughts of 'what if she finds something bad', I will squish them down for the duration.

However after cancer, even though you have all sorts of oncologists and other fun doctors, your primary care is the one who is supposed to oversee your care. Hence, I have a paltry list of 15 questions for her. And I assume I will be sent for blood work after and maybe other tests. I expect I will be there for a few hours.

I am looking forward to talking to her about multiple issues that do not fall under the care of any of my bazillion specialists. And there are a few. If someone (besides me) can pull all my medical crap  together and make sense of it, I will be happy.

After I will go to the gym to work off any residual stress.

Your Decision, Not Your Doctor's

In years gone by, doctors were regarded as gods. They knew all, were not to be questioned and patients should obey unquestioningly. Those days are gone. Patients are empowered. They learn about their conditions, they question their doctors, and they make their own decisions. They may rely on their doctor's advice but clearly make their decisions.

However, a recent study (because we always need more damn studies) found that doctor preferences for surgery type greatly influenced patient choice in early stage breast cancer surgery.

"Researchers surveyed more than 3,300 women with early stage breast cancer and 349 surgeons who treated them. About 16 percent of the patients had both breasts removed.

Only 4 percent of those whose surgeons heavily favored breast-saving surgery and were most reluctant to remove both breasts had the procedure. That compared to 34 percent of patients whose surgeons were most willing to do the surgery, the study found.

"That difference is huge. Even for a procedure that is very patient-driven, we see that surgeons account for a lot of the variability in the community and those surgeon attitudes really matter in terms of whether a patient does or does not get CPM," said study senior author and professor of medicine Dr. Steven Katz in a University of Michigan news release."

If the reasons given for a bilateral mastectomy are given as "patient peace of mind, avoiding conflict and improved cosmetic outcome", then why are the results so skewed to the surgeon's preferences?

Again, its your body and your decision and not your doctor's

Narrow Mindedness

I realize that a lot of academia, where medical research often happens, primarily uses Apple computers - desktops, iPads, and iPhones. However just because they use iPhones doesn't mean anyone else does. Hence the problem.

I received an email recruiting women for a study by the Army of Women on the Relationships among Cognitive Function, Lifestyle, and Exercise after Cancer Treatment (ReFLECT+). I said great. Let me see if I can sign up. I greatly appreciate what the Army of Women does and support them wholly. But I can't believe the narrow mindedness as part of their study.

As they recruit for non-white participants, they gave themselves a big obstacle. Look at who can participate:

You can join the Relationships among Cognitive Function, Lifestyle, and Exercise after Cancer Treatment (ReFLECT+) study if you match ALL of these MAIN categories:

• You are a woman age 21 or older
• You have been diagnosed with breast cancer at any time in your life. Women who have not undergone treatment, are currently undergoing treatment, or who have completed treatment are eligible to participate in this study.
• You have access to an iPhone
• You live in the United States
• You self-identify as a racial/ethnic minority such as but not limited to African American, Hispanic/Latina, Asian, American Indian, Alaska Native, Native Hawaiian, Pacific Islander, or more than one race

You have to have an iPhone. I googled this and iPhone usage is around 15% of the country. "However, its market share fell from 14.8% in the first quarter of 2016 to 13.7% last quarter."

So they just limited their research pool to less than 15% of the population. And they wonder why they can't find enough patients to participate. 

And we wonder why medical research costs so much....

Surviving Life With Ailments

What is the best way to survive ailments? First of all, one step at a time. And take as many breaks as possible to have fun.

That is what I did today. I may have my feet up recovering but I had fun, with my husband.

Today we went to a museum and out for lunch looking at the ocean. My feet are really tired. My knees hurt. My hips are speaking up too.

But by spending a few hours out doing something outside our normal activities it was a nice break. I didn't have to think about any of my medical ailments (until my feet started to hurt) or upcoming medical misadventures - which includes knee arthroscopy in a couple of weeks.

It is easy to get in a rut of medical issue followed by medical issue followed by medical issue. It is impossible to keep going in the medical rut day after day. You cannot do it without leaving your sanity in the hospital hallway.

So take my advice and go do something special. Get out of  your rut and have fun.

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.

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.