Saturday, September 23, 2017

Clearing Your Plate For Better Balance

With a slew of health ailments comes lots of responsibility.  I need to take responsibility for taking my medications, getting to my doctor appointments, getting to the gym to keep a minimal bit of fitness, as well as basic household stuff (laundry, groceries, garden, etc) as much as I am able. I also need to take care of my emotional self.

Therefore I need to clear my plate of crap and balance myself better. There are some things which should just be taken right off my plate. These include:

  • Anyone else's problem. Sorry. I don't have time for them. I'll talk to you about them. Commiserate with you about them. But I will not stress or worry for you. Sorry.
  • Anything that is beyond my control. Idiots in Washington, or any other politician anywhere in the world. The weather. Climate change. Hurricanes or blizzards. 
  • Anyone who is trying to make me feel bad. If you don't like how I look, what I am wearing, what I am knitting or reading, etc. Sorry. That's your problem. Not mine. As a result you will find you see me a lot less because I don't have time for your attitude.
All of the above has just be pushed off the edge waiting for the waiter with the crumb scraper to clean them up and throw them away.
As a result of doing this I may appear unsympathetic to some but I am trying to preserve any remnants of my sanity. 

If you find yourself overstressed, try clearing your plate of anything you can. You can't take on the burdens of your friends and family members. You can be concerned but you need to focus on yourself. Start getting rid of the things similar to what I took off my plate and see if you can achieve better balance.

Friday, September 22, 2017

I Travel In Elite Circles

Well I don't travel actually. But Lady Gaga of all people and I have something in common.We both have fibromyalgia.

Her fibro is bad enough that she has cancelled the European leg of her latest tour. Because of pain and fatigue.Why do those terms sound so familiar to me?

Think of it this way, if a famous personality who makes money by going on tour to sell more albums (or copies of songs downloaded - or however they count that these days) has to cancel, she must be in a lot of pain.

I can relate. (I wish I had a European tour to cancel - as long as I went to a lot of beaches and my husband was there, and someone else carried all the luggage) . I am happy these days with making it through going to the gym and the grocery store before I collapse.

I hope she feels better and gets some good pain management to help.

Thursday, September 21, 2017

Complications After Cancer Linger

My least favorite phrase is 'with your medical history we need to be sure'. I have been hearing it since my first cancer diagnosis. Even though my two cancers, thyroid and breast, are not what are considered the most horrible kinds, they both could recur and kill me anytime they want.

What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.

All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.

After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.

Wednesday, September 20, 2017

Well, Crapola!

A few weeks ago, I posted about what my pain medication may hide, yesterday I found the truth. Call me slow about some things but I had to do some thinking.

I have RA, fibromyalgia, bad back, etc - all sorts of nice things that cause pain. So I get the good drugs. I have this awesome pain patch that masks 99% of it. It wasn't until I was an idiot a few weeks ago and forgot to change my pain patch I had no idea how much pain.

The thinking process I had to go through was what was all that pain from and why is it important? I know several people that have RA as well, my mother and an old friend. Both of them are on injected biologics for their RA and nothing else. My mother has other issues and has pain meds. My friend does not have pain meds. Her RA is only treated with a biologic.

More thinking. Then I thought, was my treatment of methotrexate and leflunomide supposed to be taking care of all my RA issues and stopping progression? I didn't really know. In recent visits with my rheumatologist she had been concerned why my knuckles were sore (which they shouldn't be because of my treatment) and she had tweaked my treatment a few times.

Finally, on Friday I decided this has gone on long enough. I sent a message to my rheumatologist (who doesn't work on Fridays) and her nurse called me back. She asked me a bunch of questions. I asked her one question - is my treatment supposed to be controlling all my RA so that I don't have significant pain? Her answer was yes. So I knew, my pain meds were hiding much more aggressive RA than previously thought.

Monday, I got a call on when I could come in to see the doctor or one of her PAs as soon as possible. I actually got into see her yesterday. She needs to go to the next level in treatment and talk to my oncologist because of my cancer history. Some biologics have a TNF factor hidden inside (the T stands for Tumor) and she doesn't want to give me a recurrence (which happened to one of her patients a few years back).

But wait:
First, in the interim she wants me to try prednisone again to reduce inflammation. Start really slowly so I do not react again and if I do react I need to call her.
Second, she needs to talk to my oncologist about her thoughts on my medical history and RA treatment.
Third, she isn't going to change anything until my knee is completely healed after my October 5 arthroscopy. So this will be mid to late November before this change happens.

What all this means is now I am no longer in the mild to moderate RA club, but in the moderate to severe RA club. Another club I don't want to belong to.

Monday, September 18, 2017

Being Breast Cancer Savvy

Buried in another article based on a woman doctor's problems getting screened for breast cancer by the UK's NHS, are three rules on how to be 'Breast Cancer Savvy'

  • You Don't Need to Examine Your Breasts
    All women, no matter what age, should get to know their breasts. But experts have stopped recommending self-examination routines. Studies have shown that most women who find breast tumours do so during the course of everyday life: while dressing, or just rolling over in bed. The key is to know what looks and feels normal to you.
I wholeheartedly agree with this. I am incapable of finding any lumps.
  • Don't Ignore Symptoms
    The most common sign of breast cancer is a lump within the breast. But you might find one in the armpit or notice skin changes on the breast such as dimpling, and changes in the appearance of the nipple, or its shape or how it feels, or a discharge. Breast pain on one side that lasts after a period, a rash and any change in the size, shape or symmetry should be investigated.
Well 'doh!' If something not right, get it checked asap
  • Make Sure You Go To That MammogramIf breast cancer is detected early, it is more treatable. Screening uses mammograms – a type of X-ray – to look inside the breast. All women between 47 and 70 are invited for screening every three years. NHS screening is opt-in after 70, so make sure you get in touch with your local unit to make an appointment:
Um yes. Its a great tool for finding breast cancer before it gets really big and ug

I think I will be forced to blog about the rest of the article tomorrow maybe. 47 is way too late to start mammograms. My maternal aunt was diagnosed at 76 with breast cancer....  Grrr.

But in the meantime. Be savvy. Savvy is almost like being cool.

Sunday, September 17, 2017

Beeswax and Helping

If you want to be a good friend during a medical crisis, ask how you can help. Don't say, 'how can I help?' Ask 'Do you need anything from the grocery store? I'm going later today.' Mow their lawn. Pick up their kids from school. All those things. Anything you can do.

However, its 'none of your beeswax' on what exactly their health issues are so:
  1. Do not interrogate them daily on what's the latest from their doctor 
  2. Do not tell the world every little detail you interrogated out of them. Its not your story to tell.
  3. Do not tell them your cousin's hairdresser's uncle's neighbor's son had the same thing and their treatment was what your friend has and they died in the end. Or conversely, their treatment was different and must be better because they lived another two years.
So remember, do not interrogate, its not your beeswax to share, and any other treatment anyone else had is irrelevant.

But go mow their lawn.....

Saturday, September 16, 2017

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

Friday, September 15, 2017

What Does That Symptom Mean?

Right now I am contemplating the additional pain I have been having in my fingers/hands and toes/feet recently. I do not expect I have hand/foot cancer but that my rheumatoid is doing funny things. I am not researching online, I am going to send my doctor a message. That is the mature adult thing to do.

Normal people think that headache or scratchy throat is nothing. But to cancer people a headache is a brain tumor and a sore throat is esophageal cancer. Along with your cancer diagnosis  you learn that Dr Google and Wikipedia are not your friends for medical information.

But with cancer, every little symptom gets a new meaning. And the emotional stress can be amazing. Which is why its time to stop googling symptoms. Ask your doctor instead.

Thursday, September 14, 2017

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....

Wednesday, September 13, 2017

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.

Tuesday, September 12, 2017

How Much Do Cancer Drugs Cost?

The line from the pharmaceutical manufacturers have always been that it costs billions to develop new drugs. And they have to recoup their costs for the drugs that don't make it. This is why we have cancer treatments that cost well over $100,000 each year.

But now the truth is out.

Tufts Center for the Study of Drug Development conducted a study on development costs of cancer drugs.What they found is a much lower total for development of a cancer drug.

"A new analysis finds the magic number is $648 million, which is substantially less than an earlier albeit controversial estimate of $2.6 billion for the cost to develop any and all new medicines, in general. 

As with that earlier estimate by the Tufts Center for the Study of Drug Development, though, this latest analysis is already engendering criticism, a reflection of an ongoing debate over true development costs and how these should be calculated. This is important because the pharmaceutical industry has often used R&D costs to justify its pricing."

“These results suggest that pharmaceutical drug development is extremely lucrative and the current drug prices are not necessarily justified by the R&D spending on these drugs,’’ the researchers who conducted the new analysis — Dr. Vinay Prasad of Oregon Health and Science University and Dr. Sham Mailankody of Memorial Sloan Kettering Cancer Center — wrote in JAMA Internal Medicine. 

To arrive at their $648 million estimate, the researchers chose 10 publicly traded drug makers with only one cancer medicine that, at the time of regulatory approval, had no other treatments on the market. They reviewed eligible candidates during a 10-year period beginning in January 2006, some of which were developed internally and others that were acquired. 

They calculated total R&D spending from the first R&D work to the year of approval and also accounted for failures — the cost of drugs that never made it to market. In addition, the researchers assigned 7 percent opportunity costs, which is the return that investors could be expected to forgo if the money had been invested elsewhere while a drug is being developed. This raised median costs to $757 million. 

“The total revenues from the sales of these 10 drugs after approval were $67 billion, more than 7-fold higher than the total R&D spending,’’ Prasad wrote in an e-mail. “The median time on the market for these drugs was four years. Since the median duration of market exclusivity for oncologic drugs is about 14 years, these drugs will earn billions more. Nine out of 10 companies had higher revenues than R&D spending and four companies had more than 10-fold higher revenues than spending.’’ He also maintained that the cost to develop cancer medicines is unrelated to the novelty of the mechanism of action or the efficacy of the drugs. "

Of course there are dissenters to this study's results as always. Personally I believe any study will have its dissenters. It is not that difficult to find something to disagree with on any topic.

But I digress. Although this number may seem astonishingly low compared to the previously cited $2.6 billion, I still think that the truth is much closer to this latest number of $648 million than to $2.6 billion. This latest study, while under scrutiny is probably a new

Monday, September 11, 2017

Oncology Anxiety

It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.

I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.

I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.

Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....


Sunday, September 10, 2017

Living For Now

I am a big supporter for living for now. Sometimes we are so focused in living for the future - saving for retirement, a rainy day, or whatever. We plan our future for ourselves and our family members - education, get a good job, etc. Our culture tells us this. It seems like the biggest reason we have jobs is to save for retirement.

However once you have cancer a time or two, you start questioning this saving for the future business. Why are we doing this if we may not be here to use it? We save up to 10% of our salaries or more.... And cancer? It could take us any time.

When I was diagnosed with breast cancer, it was my second cancer and I really started questioning all this.... Today I read an article about a British news presenter, Victoria Derbyshire, decided to start living for now after her breast cancer diagnosis and treatment. She stopped saving for retirement and got rid of her mortgage protection insurance.

This is another example of how a cancer diagnosis knocks you off your feet. People may wonder why we get so stressed at a cancer diagnosis. Yes it can kill us so we may not want to plan for the future any more because we might not be there for whatever we have saved. So we like to live for now.

Friday, September 8, 2017

Wait A Minute, Back Up Please!

A new study shows "How a Chemo Drug Can Help Cancer Spread from the Breast to the Lungs". Really? How does that work? Why are they telling me now instead of before chemo?

"Researchers at The Ohio State University studied the cascade of events that lead to metastatic cancer and found clues to why it happens, opening up the possibility of one day interfering with the medication's downsides while preserving its cancer-fighting properties in breast tissue.

The front-line chemotherapy drug paclitaxel sets off a variety of molecular-level changes that allow breast cancer cells to escape from the tumor. At the same time, it creates an environment in the lung that is more hospitable to the cancer cells, facilitating the spread of the disease, the researchers found in a mouse model of breast cancer."

I know chemo drugs are strong which is why they are used to kill cancer cells. But this is just really bad. Why? Because the 'other name for paclitaxel is Taxol. Which I had. Thanks for that push back on the cancer roller coaster. 

And then there is this little disclaimer at the bottom that's supposed to make us feel better.

"She said it's important to recognize that the cancer cells in the study's mouse model are very aggressive and that it would be interesting to test whether paclitaxel also enhances the escape of cancer cells at earlier stages in cancer progression."

Thursday, September 7, 2017

What Does Your Pain Medication Hide?

Last weekend I was a total idiot and forgot to change my pain patch for so long my RA was causing me agony. But I also felt pain in other places that I did not expect. My RA pain was definitely the worst of all.

What this little spurt of idiocy tells me that my pain meds, especially my pain patch, are working and do take care of my pain. This is a very nice thing to know. I am not living in pain (most of the time) because of them.

But then what concerns me is what are my pains caused by. Okay, I am no idiot but I do know that what I felt in my hands and feet is caused by my RA. But then I have pain in other places that I didn't expect. These now need to be explored (not here) but with my doctors to see what causes them - in other words, are they something to worry about.

Pain is your body telling you something is wrong. I just need to know what's wrong and hiding behind my pain medication. Damn.

Monday, September 4, 2017

Breast Cancer Treatment Benefits

Recently it was announced in a draft proposal that the UK's NHS would not cover faslodex to treat estrogen positive metastatic breast cancer. While this may be disappointing to some, at this point I agree with the decision.

The reason given for the decision is:

"While NICE [National Institute for Health and Care] Excellence acknowledged that it can stall tumour growth by up to three months compared to aromatase inhibitors, it said early evidence isn’t strong enough to show that the drug extends survival."

What is the point of spending millions of dollars on patient medication if it does not extend survival? This is a real problem with many new medications where they are shown to treat an ailment but the question often comes down to the length of extended survival. 

If you had metastasized cancer how much money would you pay and side effects would you endure to simply live a few weeks longer? I think we all want to life as long as possible but the costs to be endured can be too high. If you get side effects such as diarrhea where you are forced liquids and electrolytes to keep you alive, is that worth it? Bed ridden in extreme pain? Just because this stupid pill is slowing your tumor growth - and might be keeping you alive longer.

Again, we get to the discussion of quality of life. In my opinion that is one of the most important pieces of medical care. If you are suffering, do you want to be alive? Not me. If you are given so many pain medications that you don't know which way is up because of the other medications you are on, is there quality of life?

I'll be making my own decisions focusing on my quality life thanks.

So I am backing NICE here in this decision to hold off on approval of Faslodex, this fancy new drug that may or may not prolong life.

Sunday, September 3, 2017

Why Did I Feel So Bad?

I have good days and bad days. Little changes, like a poor night's sleep, can cause me problems for a few days. I realize that. Forgetting medication can really mess me up. Last winter I had a horrible cold and forgot to take my Lyrica for a few days. Then I started feeling even worse - the Lyrica hangover.... But then I figured it out and went back on it and felt better instantly.

I have been feeling bad off and on all week but mostly with in reason. Until yesterday. I woke up achy and sore. I didn't sleep well because I couldn't get comfortable. I had a throbbing headache. My hands were really sore on Friday - I couldn't knit because they hurt so much. By 9am yesterday, I decided I was spending the day in bed.

Then I found out my brother, his girlfriend and dog were coming for the weekend so I had to motivate. My brother has a standing invitation to come visit any time with or without kids, dog, girlfriend. Our guest room, a/k/a our finished basement is where people stay with a dog free overflow upstairs in a guestroom and the pull out couch in the livingroom. Before that text message, the basement was a disaster. All my knitting and weaving stuff was everywhere in piles, being sorted, finished, etc. So I had to motivate.

While motivating and cleaning, I realized that all my problems were pain. My pain is primarily controlled by a 7 day pain patch that I change weekly. I realized I had no idea when I had last changed my pain patch which probably means it was more than a week. I never remember what day to change it. I try to change it on the same day I fill our 7 day pill boxes but when I change filling our pill boxes because of some scheduling issue, that screws it up.

And I have no brain. I can't remember anything....

All I know is that I had so much pain yesterday that even after I put my patch on it took several hours to recover. The power of one little pain patch.

What did surprise me is the level of pain that I had.... I definitely need to talk to my doctors about that one.

Saturday, September 2, 2017

I've Been Sliding

The road to hell is paved with good intentions. I have been lazy this summer and taking it easy - in terms of not taking care of myself as much as I should. Why not? Summer time is nice weather. There is no snow and ice to trip me up. I usually feel better during the summer. But just because I feel better doesn't mean I can stop taking care of myself.

With every doctor appointment, there are the reminders to eat healthy, blah, blah, blah. I usually reinforce my intentions. 

But I have been sliding, I have been lazy and haven't been taking care of myself. I have been pushing myself too much and not resting enough. I haven't been eating right - wine and candy have been part of my diet. And they should be. Never mind fried clams and french fries. (But they are my favorite and I only eat them in the summer.)

So now that fall is almost here (and the temperature has been in the 40s the past few nights) its time to clean up my act. First of all, I have tons of tomatoes in my garden that I need to eat. I should start eating more of them before the first frost. There are also some green beans out there and more zucchini, cucumbers, and peppers. So lots of veggies just waiting for me.

Second of all, all these sugars (wine and candy) need to stop. I need to stop them and maybe I'll even lose some weight (very helpful). I could stop carbs all together but since I like bread too much). 

So I will reinforce my intentions and try to do better. It would be nice to be healthy person and have more leeway in my diet.

Friday, September 1, 2017

An Educational Conversation

I had an interesting conversation. I am doing some research on hospices and palliative care (for someone else, not me). I met with a social worker who used to work for a hospice. She was very helpful.

I had no idea how hospice care worked, especially at home. Basically hospice care includes palliative care. If you have hospice care at home everything comes to you. Doctors, nurses, social workers, and more. It lasts for up to six months. If, at the end of the six  months you are still alive, you can be recertified for more hospice time (I think) unless you are too healthy and stable and then its back to reality.

Hospice care is also paid by medicare or medicaid unless you have long term care insurance. So think of it as free care when you are sickest and it all shows up at your house. If you are interested in hospice, its best to start research as soon as possible.

I found it very interesting how the process works. And learned that basically if you have been given less than six months to live, sign right up.

So from what I learned, when I get to that point in life (face it we are all going to get to that point in our lives), I will sign up for hospice.

Wednesday, August 30, 2017

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.

Tuesday, August 29, 2017

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.

Sunday, August 27, 2017

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.

Saturday, August 26, 2017


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.

Thursday, August 24, 2017


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.

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.

Friday, July 14, 2017

Another 'Oops, We Forgot To Tell You This'

Another little bitty oopsie. Many women after a mastectomy for breast cancer get implants to make them more even again. Then there are the hundreds of thousands of women who seek implants to enhance their bodies. And then comes the oopsie.

There is a rare cancer which is caused by implants.

"The American Society of Plastic Surgeons says around 550,000 women last year received breast implants, but the FDA published a report this year linking a rare cancer to the implants.

So far, there have been 359 reported cases globally, including nine deaths.

The risk is low, but one in 30,000 women with implants could develop it,..."

Nice! Oops!

I am sure there are other potential side effects from breast implants but cancer isn't a fun one. Especially if you got implants after breast cancer - part of the cure caused a new cancer?

However the biggest part of the cure for the new cancer is to remove the implants. So have another surgery to fix the last surgery

Then there is a woman in Montana whose insurance company won't pay for the removal of her implants even though they caused her cancer. The company claims they are cosmetic - which they were originally - so they won't cover their removal. 

This woman, Kimra Rogers, is fighting her insurance company to cover the removal of her implants. And she is also fighting to raise awareness for this type of cancer because she was told that the implants were 100% safe.

Oops, again. 

While we might dislike the long list of potential side effects that accompany everything but this is one case where they made a tiny oops.

Thursday, July 13, 2017

Thursdays Are My Favorite

This morning I realized something. Thursdays are my favorite day. Why? Because I have my knitting group.

I really like my knitting group. When we moved a year and a half ago, I wanted to continue to do something cancer support related. Not necessarily something to provide me with support for my cancer crap. But more for something to connect me to the cancer community and other cancer people.

We didn't really move that far. Probably only 10 miles as the crow flies. But in little New England towns, that can be far, far away. The town where we lived is much larger geographically than our old town but has fewer people. To get to where we used to live, we have to go to three other towns. So culturally it's another place. My father tells me we no longer have Boston weather but New Hampshire weather.

Anyway, I had to find a new place to connect to the cancer community so I approached a cancer support center closer to our new house now than before we moved. We agreed I would start a knitting group in the spring.

It's been doing pretty well, with ups and downs in terms of members. We have a core group that comes regularly. We are fairly flexible in terms of who we like to join us. The main requirement do some sort of craft that can be brought to the group - we have cross stitchers as well as knitters and crocheters and have a beader coming to join us. And probably our best knitter is a gentleman who knits items for his children and grandchildren.

The only other requirement is that everyone has to have had cancer. We initially were pretty open on who could join us. But after a few uncomfortable sessions with people who just didn't 'get it', we decided that we really only wanted to have people who 'got it' because they had had cancer too.

As a result we have a group which communicates on many levels about cancer. Our topics can be wide ranging. But its always a wonderful conversation. It seems we have connected in different ways and our crafts help bridge our differences. Some participants have said its better than their other support groups.

I look forward to every Thursday afternoon where for two hours I connect with people who understand my life in a different way than many other people.

Wednesday, July 12, 2017

Too Tired

I was going to write I am too tired to blog. But I will squeeze a few words out. But this is my life. I felt okay this morning. Did some weeding in the heat and 100% humidity and then went to the gym in the air conditioning. After I cooled off I took the car for an oil change at the dealer.

I had to wait standing up at the dealer for a good five minutes to get checked in. That makes me tired and cranky. They were very nice about it and even told me about a bakery where I could get a snack while I waited. It was a five minute walk. That was too far for me to walk so I sat at the dealer.

Now that I am home and have had something to eat I am going to continue to sit here for a few hours because I am too tired.

Tuesday, July 11, 2017

Stop Changing Your Mind Please

[A breast cancer tumor imaged with a technique that highlights aspects of its microenvironment.
NATIONAL CANCER INSTITUTE/UNIV. OF CHICAGO COMPREHENSIVE CANCER CENTER]I really wish they would stop changing their mind. I know several women who have had chemo before surgery to reduce the size of their tumor. If you have a woman who has a fairly large tumor and chemo before surgery has the benefit of reducing their surgery - maybe from a mastectomy to a lumpectomy. This is actually a huge benefit. The surgery is so much less drastic. 

"The main goal of pre-operative (neoadjuvant) chemotherapy for breast cancer is to shrink tumors so women can have a lumpectomy rather than a more invasive mastectomy. It was therefore initially used only on large tumors after being introduced about 25 years ago. But as fewer and fewer women were diagnosed with large breast tumors, pre-op chemo began to be used in patients with smaller cancers, too, in the hope that it would extend survival."

However new research says it isn't a good idea. Nice. How helpful. 

"But pre-op chemo can, instead, promote metastasis, scientists concluded from experiments in lab mice and human tissue, published in Science Translational Medicine.

The reason is that standard pre-op chemotherapies for breast cancer — paclitaxel, doxorubicin, and cyclophosphamide — affect the body’s on-ramps to the highways of metastasis, said biologist John Condeelis of Albert Einstein College of Medicine, senior author of the new study.

Called “tumor microenvironments of metastasis,” these on-ramps are sites on blood vessels that special immune cells flock to. If the immune cells hook up with a tumor cell, they usher it into a blood vessel like a Lyft picking up a passenger. Since blood vessels are the highways to distant organs, the result is metastasis, or the spread of cancer to far-flung sites."

Go read the rest of the article here. I am disappointed in this.

Personally, I find this upsetting. It clearly shows a loophole in cancer treatment. What may have been a great idea for many years is being shown potentially as a huge mistake. Yes more research is needed but seriously? Cancer treatment is clearly a crap shoot still.

Monday, July 10, 2017

Over Reactions

I have no idea why my body has changed so much but it has. And I tend to blame chemo for the changes. Since chemo, I have reactions to tons of things. The list of things I am allergic to has grown immensely. I am even allergic to Benadryl....

I will say its been a very long time since I was stung by a bee. That is approximately 1986 when I stepped on a bee that had come in through the wall of our kitchen in an apartment. I remember it as being extremely painful because there is no flab on your toe to absorb the venom. I ended up calling the pharmacist to ask for options.... But I also remember it going away mostly by the next day.

I was stung one other time that I remember being stung by a bee was as a child....

On Friday I had a bit of an adventure. I was feeling better so I went and poked around in the garden, did some weeding, admired my tiny little green tomatoes, and watered a little bit. My husband had gotten stung by a bee a couple of weeks ago near our rhododendrons out front. 

All of a sudden Friday, I got stung twice by bees and started running to the front door as I got stung two more times. I got stung one last time at the front door. I have I think a total of six stings: left elbow, left knee cap, left lower calf, behind my right knee, right upper calf and right ankle. As it has been so long since I was last stung, I waited a little bit to make sure I was feeling okay and wasn't having a severe reaction. That's a lot of stings. 

Now it is almost 72 hours and they itch like mad! I have tried all sorts of things to get them to stop. I did some research and got some spray on anti-histamine 

That's the bite on my lower left calf. Look how big it is. Some of the other's are even bigger. My research told me this:

"Normal local reactions

You’re likely to develop a raised welt around the sting site. A tiny white mark may be visible in the middle of the welt where the stinger punctured your skin. Usually, the pain and swelling recedes within several hours of being stung. Unless you’re allergic, most bee stings can be treated at home.
Large local reactions
“Large local reactions” is a term used to describe more pronounced symptoms associated with a wasp or bee sting. People who have large local reactions may be allergic to wasp stings, but don’t experience life-threatening symptoms, such as anaphylactic shock. Large local reactions to wasp stings include extreme redness and swelling that increases for two or three days after the sting. Nausea and vomiting can also occur." 

Most of the time, large local reactions subside on their own over the course of a week or so. Let your doctor know if you have a large local reaction after a wasp sting. They may direct you to take an over-the-counter antihistamine medication (such as Benadryl) to reduce your discomfort."

A week or so? Thanks I can't wait to itch like this for four more days. I'm still blaming chemo. Damnit.

Sunday, July 9, 2017

Its Not Just A Cold Anymore

I got a cold last Sunday. This is day 8. While I feel better mostly, I know better than to push myself. Hence I stayed home mostly for a week. I did not go to the gym. I did not contaminate my knitting group full of cancer people who would not welcome germs. I didn't take my 88 year old father to his doctor appointments. I skipped all July Fourth events. I didn't do much of anything beside catching up on my knitting and going on an emergency kleenex run when I ran out. (And getting stung by wasps when I inadvertently discovered the wasp nest six feet from our front door.)

I did all that on purpose. My goal is not to be sick for two weeks.

Last night we actually went out to dinner. It was nice. Then I went to bed at 9 pm (not that it was that early for me). But it was very nice to get out.

Tentative plans for today include going out to lunch with a friend. That's it. I am not going that far. I am not staying out for long.

Tomorrow I hope to go to the gym and meet a friend for coffee on the way home. I am feeling better and will slowly return to normal but will not push myself.

With a compromised immune system, I have to be very careful. (Think of when you were in chemo and told to be careful with exposure to germs.)

Unfortunately, I hope to look forward to another 30 years of this. But I'm still here.

Friday, July 7, 2017

Its Not All Peaches And Roses

Life as an unhealthy person is not all peaches and roses.... Wednesday I wrote about Claire the amazing woman with CF who is full of energy and fun and talks about things we don't want to talk about - like dying. Anyway, she says she wants to wrote a book but not one about a 'happy sick person'. There are a lot of books out there about 'happy sick' people but reading them doesn't necessarily make you feel happy for them.

Honestly who can put a perky spin on being sick? One of the many downsides of life with chronic illnesses is that a little thing becomes a big thing. You have no idea.

Anyway, the world is papered with books about being cheerful, finding yourself, eating better, or walking/riding/hiking thousands of miles or something unimaginable to me.

After my first cancer diagnosis, I picked up your basic paperback fiction romance novel and found out it was about a woman who had some sort of heart defect and how she lived with it. I was not ready to read it and threw it across the room. Eventually a few years later I finished it and like it.

Later, after breast cancer I was older and more adventuresome in my reading. I read and liked 'Crazy Sexy Cancer' by Kris Carr. (I highly recommend that book and website and movie - hint, it's all about attitude). What I did like was the fact that her life was not all peaches and roses when she was diagnosed. She showed us how to cope and accept and develop the cancer attitude for making life good again - I mean what more can you ask for?

I have a bunch of other books that were noteworthy about life with cancer/other terminal/chronic ailment. If you search on the tag 'Books' on my blog, you might find them. I did read a graphic (cartoon) book that was about a woman with breast cancer (and I can't remember that title and I didn't put it in my blog). It ends when she goes to her last PET scan.... You get the idea.... I was very upset after reading that one.

I think somewhere out there is a happy medium of what life is like in the unhealthiness world in which some of us reside. I think Kris Carr is one who comes very close. But there are so many who miss the mark. Getting breast cancer and writing a book how our heroine starts wearing all pink, goes on long walks and ends up doing every Komen walk around the country, and finds God along the way, does nothing to help me feel better.

[I do not mean to offend anyone and their religion. Everyone believes differently. God did not give you your ailment. God is not going to cure your ailment. Talking or praying to God may help you feel better. However, he does not have the magic wand all of us sick people wish for.]

Anyway, we all do what we can to feel better after we find out we are not that healthy. Books about the not so rosy side of life post diagnosis can be very helpful. But the badly written ones, not so much

Wednesday, July 5, 2017

Live Life the Fullest

Don't let anything hold you back in your pursuit to live life to the fullest. You want to experience everything and anything (well except maybe eating insects, flydiving, going over Niagara Falls in a barrel, or other really weird things). Get out there and do as many as many things as you can.

I think I want to say that I don't think you need to constantly push yourself to do something every minute. Sometimes you need to sit there and appreciate what you just accomplished. You should also share your experiences with others who might benefit from what you have done.

Do not let your health hold you back. Okay, if you break your leg or blow out your knee, you can put off climbing Kilimanjaro until it is healed.

I had always wanted to spend a semester or school year in Europe studying during college. Even though I was treated for thyroid cancer in the summer between my freshman and sophomore years, I still went to France for my spring semester of my junior year. I brought several bottles of my thyroid replacement medication and information on how and who to contact at the American College in Paris in case I needed medical care and set off. You have to remember this was before fax machines, cell phones, and the internet so the only way to contact the US from Europe was by slow air mail or very expensive international calls. My health wasn't going to stop me.

Since then I have traveled far and wide. I have been to Europe and Japan. I have been to events all over. I have climbed mountains. I have skied. I have done lots of things. I had a lot of fun (getting my body into the shape it is now).

Every so often I run into someone who is out there living life as full as they can. Claire Wineland is one of those people. I would love to meet her someday but for now I will continue to read about her and follow her. This article starts off with:

"As a small child, she played hide-and-seek with nurses, ripped out IVs to race around the hospital floor naked and left an explosion of glitter in her wake.

As a teen, she got boys to carry her uphill when she was tired, taught her best friend how to flirt and watched her doctor squirm as he gave her the safe-sex talk.

And as an adult, Claire Wineland has continued living out loud, even as her body fails her.
Claire, 20, has cystic fibrosis, a genetic and terminal progressive disease that's landed her in the hospital for a quarter of her life. Ask what's on her bucket list, and she'll say she doesn't have one.
Fixating on a checklist of goals before she goes "sounds exhausting," she says, especially "when you've been dying your whole life." Instead, she'd rather focus on doing all she can in each moment."

She also has written a book (but not one about a happy sick person), heads a foundation, and makes videos among other things. One of the videos I do like is 'Dying 101':

Get moving and fulfill your dreams!

Tuesday, July 4, 2017

I Need Playtime Too

A new study finds that pediatric cancer patients can avoid anxiety required anesthesia before radiation treatment... by... (wait for it) ...substituting playtime. This was the result of  work by a nurse at Johns Hopkins who found that there was no standard protocol other than to routinely give anesthesia to pediatric patients.

"What we found was that we had no standard; we were just basically signing kids up for anesthesia because they were anxious, because of the unknowns. We had complications happen under anesthesia and radiation. Another component was that it was taking up a lot of time. Now, with this program, we can avoid the risk and complications that come along with anesthesia as well as give back that precious time to the family. Kids get stressed staying in radiation too long."
There is a commercial that features a male pediatric oncology nurse giving a patient a shot (I think) and distracts her by singing a song with her. Why only for kids?

I could use playtime to avoid anesthesia before some stressful occasions. Why not?

Honestly every time I go for some stupid scan I don't want to sit in a chair and stress about what they may or may not find after two cancer diagnoses. Nor do I want to watch a TV program on something I don't care about. Nor do I want to pretend to read a book or articles on my tablet.

I would prefer to be playing games and having fun. Or out having coffee with a friend. Or anywhere but in a sterile waiting room watching my blood pressure go through the roof.

Let's start a movement to make hospital waiting rooms less sterile and more focused on patients needs. Where I go waiting rooms have padded chairs, wifi, TV, and usually exterior windows. I want more than that. I want snacks. I want volunteers wandering around talking to patients to help them relax. I want bright colors. (I really just want to be healthy and never have to go to the hospital but I also know that's not going to happen.)

Medical care has come a long way in terms of being more patient friendly but I think there is a long way to go to help reduce patient stress.

Monday, July 3, 2017

The Truth, The Whole Truth, Nothing But The Truth

The truth about cancer treatment is very complicated. The treatment options are very deep, strong, and harsh even. They are just drastic. Because they are so drastic, they can very well cause a lot of post treatment effects - i.e., side effects. The information on side effects is not a list, but a mountain.

Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably  not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.

Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.

At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.

Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.

But as patients, we need the truth, the whole truth, and nothing but the truth.

"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."

Just tell us like it is please.

Sunday, July 2, 2017

Waiting Around

I hate waiting. I pride myself on being on time. I think that people who constantly run late are rude and selfish because they are making people wait on them. They are not considering anyone else's feelings or needs. Basically that is just damn rude.

Social occasions aside, waiting for doctors is even worse. Especially when you are not feeling well. This is one reason why I do not like Emergency Rooms and will only go if I am literally dripping blood (and will therefore be put to the front of the line) is I can't stand waiting around.

A year or so ago, my opthamologist asked me to find a new one. Basically I got fired by my eye doctor because I dared to complain about waiting so long and not being a good patient. I was pissed off about waiting and decided to complain on Yelp.

In comparison the hospital I go to has had a policy for a long time that patients should not be kept waiting more than 15 minutes. I had a doctor in the 1980s who had a sign on her office door that said "Patients Should Not Be Kept Waiting For More Than 15 Minutes". Sometimes this works, and sometimes it doesn't.

In recent years it has gotten even better. Some departments which seem to run late often keep white boards posted in the waiting rooms telling you about doctors who are running being. All departments when you check in usually tell you if a doctor is running behind. And they have signs in the waiting rooms encouraging you to ask if your doctor is running behind if you are kept waiting more than 15 minutes past your scheduled time.

I love this policy. I love being kept on top of how long it will be.

I just read an article this morning about how some other Boston area hospitals are finally understanding the importance of not keeping patients waiting. Their reason? Patients are finally speaking out on social media on being kept waiting.

If you are a patient at the 'holy hospital of the best doctors in five hundred miles' you are supposed to sit quietly and wait to see the doctor who is going to cure you of everything quietly for hours and hours. I think that's crap. Social media is putting pressure on them to finally act. How nice.

As a patient, I say 'speak up on social media' to pressure your medical center to treat you as a patient who is a person as well, instead of being a patient patient.

Friday, June 30, 2017

Another Piece of Bad (And Misunderstood) Advice

Who has heard that green tea is good for people with cancer and for preventing cancer? 'Raises hand'

Yes I have heard that. I don't really like green tea that much but I do drink it occasionally. I know people who purposely drink green tea because it is 'better' for them. So here's the bad news:

"Green tea and green tea extracts are widely consumed by patients with cancer. Yet overall there is no clinical evidence that green tea or its chemical components slow tumor progression in humans — and importantly, there is some evidence that green tea compounds might interfere with anticancer treatment."

There is some early stage (stage I) research that suggest green tea intake helps:
- reduce the risk of leukemia, after 20 years of consumption
- reduce the risk of prostate, liver,and endometrial cancers, if you drink 7 cups a day
- reduce the risk of diarrhea if you take the extract, but can increase the risk of skin rash and nausea 

Green tea has also been found to prevent the benefits of chemo (chemopreventive) for breast cancer patients. 

But wait there is more:
"A meta-analysis conducted by Chinese researchers of published epidemiological studies found insufficient evidence to conclude that there is an association between green tea consumption and esophageal cancer, despite a subgroup analysis suggesting a possible risk reduction for women.

"Green tea consumption does not appear to affect the risk of pancreatic cancer."

So the take home conclusion is:

"The evidence base is immature and equivocal. There is limited epidemiologic and lab-experiment evidence that green tea and green tea compounds are capable at high concentrations of affecting tumor biology. There is not, however, substantive clinical evidence that this potential translates to clinically meaningful cancer prevention or treatment benefits in humans."

What this means is that there is no real good evidence saying green tea is really that much better for you and can mess with your cancer treatment.

As a group of people, I think we have learned to quickly grab on to what we see as 'good news' or something 'good' to eat or drink because some study said so. When we need to realize there is a good reason more research is often needed. 

Thursday, June 29, 2017

My Health Complicates Everything

I have too many ailments. Combined they interact and cause all kinds of problems. Normal people can have knee problems and then surgery to fix them. Me? Not so much.

I hurt my right knee skiing in 2001 and had arthroscopic surgery to fix as much as possible. My right knee became my bad knee. After surgery, the surgeon said if it ever stops locking up come back and see me again.

In 2015 I fell in our backyard and tore my left ACL. My left knee became my bad knee and my right knee became my good (or not quite as bad) knee. I then started over stressing my right knee which wasn't happy. In the fall of 2016, my right knee started locking up so I went back to my knee surgeon to talk about that.

Yesterday I went back to my knee surgeon who has been following me for both knees for the past year or so. And here's the bad news.

There is something going on with my right knee which causes it to lock up. It freezes and causes lots of pain. I feel my knee click back in place after a couple of minutes and the pain stops. I explained to my doctor that its not the aching pain that causes the problem its the locking and pain that I am concerned about. (Its not fun when it happens.)

Normal people would have the surgeon go in and clean up any tears that are causing the problem. He thinks its a piece of meniscus that sometimes sticks up and jams my knee. But with my medical history of rheumatoid and osteoarthritis, he is concerned that it won't heal well and I will be left with more problems.

I have to go for a second opinion. I can't wait. I just want my knee to stop locking up. It hurts like hell when it does that. My too many ailments make it difficult for me to be treated. (Never mind my medical allergies as well.)

Tuesday, June 27, 2017

Side Effects Vs. Costs

This morning an email on the discontinuation of a certain drug which the article says is a good thing because it will save billions of dollars. The drug in question is TKI and is used to treat CML. It works well at putting people in remission but comes with a high financial cost, $147,000 per year and causes many side effects.

This made me think. Which is more important - financial cost or side effects?

I am torn on this one. A drug that costs $147,000 per year is phenomenally expensive. If it was a branded drug on my insurance I would be charged probably 40% of that cost. Could I afford that? Even without pulling out a calculator that would be somewhere north of $50,000 each year. I do not have that kind of money.

I have problems with my high cost medications. I am on several that each cost me over $1000/year - which to me is a lot.

Then there is the side effect issue. I am on medications for the side effects of some of my other medications. I also have to have regular blood work and chest x-rays done to monitor for other side effects. (Sometimes I think I might be better off if I took no medications at all.)

But this is a bit of a conundrum - side effects or costs.