Tuesday, November 21, 2017

What A Concept!

I met with a pharmacist yesterday or a pharmacologist. It was great. When I had my annual physical with my primary care doctor in September, she was concerned about my medications and interactions.

The pharmacologist went through my entire list of medications - prescription and OTC - and asked why I was taking each one. Then she went through and looked up possible interactions with them. She gave me some advice which I found very helpful.

  • Because I am on Prilosec for GERD from a sliding hiatal hernia, I need to take it in the morning, 30 minutes after my thyroid medication and then wait another 30 minutes before eating. I was taking it in the evening.
  • I also need to get off prednisone for my RA.I am on a low dose but its not a good idea to stay on it long.  I will stay on it until January when my hopeful new RA medication will kick in and then I can ditch it.
  • As my pain management doctor has already suggested, and I really want to do, is to reduce my Lyrica dosage or even get off it. My previous pain management doctor, if I said I had pain, he would say, 'let's increase your dose'. But he never gave me any information why or requested any scans or testing. This is why he is no longer my doctor. I meet with my pain management doctor next week. 
  • I also need to change my Calcium with D to calcium citrate not calcium carbonate - something I completely blank out on when in the store.
Also, I am only on about four medications for the side effects of other medications. We had to laugh at that. 

At the end of the appointment I felt very good. A knowledgeable neutral party had looked at my meds and found that I need to be on the meds I take. I need to be careful about some interactions and see if I develop any symptoms and cut down if needed. 

I feel like I should do this every five years or so. I feel that not all doctors look at what other medications I might be on before prescribing something new.  A good experience, for once.


Monday, November 20, 2017

Not A New Ailment

So I had a medical test recently that came back abnormal. It was then repeated. Then I had another test which also came back not so good and now a referral to a new kind of doctor that I have never had before.

My doctor sent me a note over the weekend with a referral for the new department. I asked for a copy of the latest test results and if she had a preferred doctor for me to see.

I'm pissed.
I'm not allowed to have another ailment.
That's it.

F**k.

I'm really pissed.

More when I feel ready to talk about it. I just needed to vent.

Friday, November 17, 2017

Maybe I'm Lying To Myself

I can't tell you how many times I say things like 'I'm fine', 'I didn't sleep well last night', or other creative lies about how I am doing, physically and mentally. Sometimes these are lies, to myself and to those who I am speaking.

Over at The Mighty, which is an awesome website for people with health issues. I only found it recently but immediately signed up for their emails. (That says something in itself because I think I spend more time unsubscribing from email lists than anything else these days.)They say:

"The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities."

I think that criteria might include me. Today's email talked about how people dealing with depression or other mental health challenges by hiding behind some statements about how they really feel. And what they are hiding is that they need help. I do admit to dealing with depression and anxiety. But with my health issues, who wouldn't be depressed and anxious?

So I disagree with their statement that these only apply to those with mental issues but with physical ones as well. I use them all the time. I could add a few such as 'another day not pushing up the daisies'.... Their statements are:
1. “I’m not feeling well.”
2. “Well, I’m alive!”
3. “I didn’t sleep well last night.”
4. “Eh, you know.”
5. “It’s too much.”
6. “I’m exhausted.”
7. “I’m just out of it today.”
8. “I’m fine.”
9. “I’m bored.”
10. “I’m having an ‘off day.’”
11. “I’m hanging in there.”
12. “I’ve been listening to music a lot today.”
13. “I don’t want to be alone.”
14. “I’m all good, don’t worry about it.”
15. “I just can’t today.”


But go read the full article here. And subscribe to The Mighty if you think it might help you too.

Thursday, November 16, 2017

Just Because We Can, Doesn't Mean We Should, And Who Pays For It

Back when I was first diagnosed with breast cancer, I first learned about the OncotypeDx genomic test for women with breast cancer. Of course I was not eligible for it. I can't remember why - whether it was because it wasn't my first cancer, or I had a single tiny positive node.

I am never eligible for anything because my health is too complicated to be eligible for anything. I have way too many ailments, previous or current treatments, or something. But I digress.

I watched all these other women get the tests to find out their risk of recurrence. Over the years, genomic testing has expanded from the OncotypeDx test to include a group of available tests. Which I was never eligible for....

These tests can provide helpful information. However, would everyone diagnosed with breast cancer benefit from these tests? Would the benefit of these tests outweigh the costs of them? Insurance companies never want to pay for more testing, even when it might show that a patient can have less treatment in the long run. And we cannot forget the additional stress on the patient for more testing.

A group of oncologists met at the Chemotherapy Foundation Symposium and had a moderated discussion about which breast cancer patients should have genomic test. The result of this discussion was:

"...that not every patient needs to undergo genomic testing.

He gave an example of how, traditionally, older women unfit for chemotherapy do not undergo genetic tests. “I think that this can really apply to any age, 3 cm or below, node-negative disease,” he said. Additionally, low-risk patients — possibly 20% to 30% of patients — most likely do not need to be tested, according to Brufsky.

“You really have to choose,” he said. “I think the payer’s like that, the patient’s like that, and I think we’re a little hesitant sometimes to say to [our patients], ‘Listen, you have a tumor that’s just going to do great, no matter what we do, and you don’t need to be genomically tested.’”"

Just because we can offer these tests, doesn't mean we should test every patient. Even without pushback from insurance companies on costs, more testing is never always beneficial for patients. Or for their emotions and wallets.

Wednesday, November 15, 2017

On Not Blogging About Breast Cancer

You might have noticed that I haven't been blogging about breast cancer recently. Why? Because my brain has been filled with non-breast cancer issues that take up the entire health section of it.

My brain is full of knee, RA, fibromyalgia, and other health issues. Like why can't I stop taking a couple of medications (a couple of serious conversations are upcoming)? Or why can't my hands and feet hurt less even though I am taking all these meds to make them stop hurting? Or when will my knee be all better and get back to normal? And why did I manage to get so tired yesterday when all I did was go to a yarn store (and spend too much money)?

Anyway, breast cancer doesn't fit in anywhere. I am happy that it doesn't fit.

I think its a sign that I am moving on in some ways in my life. This is a good thing. Breast cancer will never go away in my brain, as thyroid cancer, never does. Cancer never goes away.

But breast cancer will be happy to fill my brain up again at the next little twinge. [Wait, is that a lump I feel?]

I'm just going to focus on my knee for now.

Monday, November 13, 2017

Being Busy

I have not blogged for a couple of days because I have been busy. It was wonderful to be busy.

I have spent so much time by myself over the last six weeks. I have kept myself busy and on some levels, very productive. The only people I have seen with any frequency, other than my husband, are the physical therapists when I go to PT twice a week. I have been starved for the sight of other people. I needed face to face interactions.

Normally I spend a lot of time on my own which I don't mind. But over the course of a week, I would go to the gym three times, go to the grocery store, the library, my parents house, and see a friend or two. But I had six weeks of nothing. A friend drove me to the doctor, my sister and my cousin took me to PT once. I took a cab to PT. I could only go to the grocery or library when my husband was off work.

But this past weekend I had two craft shows. They were really busy. I probably did too much walking and standing on my knee (never mind my back and all the rest of my body which hates me today). But I talked to dozens of people each day. I interacted with the public. And it was wonderful.

I know I will be paying the price for the rest of the week and need lots of rest (and ice packs and heating pads). However my mood is greatly improved. I needed interactions with the outside

Living the life of an isolated unhealthy person, if it is compounded by a period of enforced isolation, can be very stressful. All of a sudden you are encircled by a wall of limitations and restrictions.

So this week I will spend a fair amount of time recovering from two days in the outside world. But I will take myself places - PT, lunch with a friend, the grocery store, library - all on my schedule. I am back into my world where I can pace myself as I want.

Friday, November 10, 2017

Driving Again!

This is a big day. I drove home from breakfast today. It was a whole three miles but my knee felt fine. And I am going to drive myself to my doctor appointments today so my husband doesn't have to. However, he will be drive me this weekend to craft shows because they are longer distances.

All this means, I am just as restricted as I always have been. I will be coming home to lie down regularly.

But I can go to my PT and doctor appointments without hunting for a ride or paying for a cab. And maybe I can get my hair cut next week.

No gym until mid December either. Wah! But this is a start. I am returning to my normal life....

Thursday, November 9, 2017

Taking The Good With The Bad

Sometimes, or maybe most of the time, I never get good medical news. I swear, my doctors go off script all too often. So yesterday I got some good news and some bad news.

First the knee doctor said I can start driving. But I need to take it easy. I need to be able to slam on the brakes with my restructured knee. Apparently the surgery did some restructuring but I am not a doctor so I don't really understand it. (All I know is I have lots of knee exercises.) First before driving, I have to practice driving in a big parking lot (like when I first learned to drive) or in our quiet neighborhood to see how it feels. And start driving slowly, not just not getting speeding tickets, but take it easy and work up to driving long distances. My husband was with me so he heard it all and will keep me restricted (maybe I should have left him in the waiting room).

In addition, I don't have to wear the awful, uncomfortable brace any more. I have graduated to the little soft brace which has little metal hinges and gives support. But I still need to be careful with my knee. I can't stand on it for long periods of time. I can't bend it more than 90 degrees, except in PT.

I can't go back to the gym until mid to late December. I should continue PT for at least the end of the year. And I need to go back to the doctor in two months.

After getting all that wonderful news at the doctor's office, we headed down to the blood lab. When we checked in they told us there was a 40 minute wait. But by some miracle we only waited 20 minutes. Today I have a nasty bruise from where they took blood - that happens sometimes.

This morning I got my blood test results. I know I am going to get calls from two doctors because some of them are way different than before. This means medication changes and doctor appointments.... Oh, joy. (No, nothing major but its just concerning when they change too much.)

So it was a good and bad day. But we went to the grocery store so we now have food to eat. I'll just wait to hear from my doctors.

Wednesday, November 8, 2017

Today Is The Big Day

I have been waiting for this day for nearly five weeks. This is the day I go see my surgeon for a follow up. I have my fingers crossed that all is well and I am given the green light.... to drive that is.

I have not been able to drive since October 5, the date of my surgery. Originally I expected that my surgery would be a minor arthroscopic clean up of my knee and I would be all healed by now. But now, during surgery they found what they really needed to do was to repair my meniscus so I don't lose any more stability in my right knee (I need all the stability I can get as my left knee has a torn ACL and likes to give way sometimes).

So they did the right thing (and I don't regret this at all) and repaired my knee. When I woke up they told me its four to five months until I am healed. At my first follow up, ten days after surgery, I asked if I could drive and was told not yet.

Today is my five week (minus one day) follow up and I have had three weeks of PT so far, so I hope this is the big day and I am allowed to drive.

If I am not given the green light to drive, I will probably cry. If not in the doctor's office but later on. Its so restrictive and depressing to be stuck at home. Walter, my husband, works all day. I have been begging drives off people, taking cabs, etc.

But I have over due library books, I can't go to the grocery store, I can't get together with friends. I am at home all day from 7am to 5pm, five days a week. To top it off, I have had a cold since last Thursday. Today I am finally feeling normal, after 14 hours of sleep. And I have been eating too much left over Halloween candy.

Its not that I want to go out all day, every day. I just want to get out of the house and see other people. Its I just want my life back. I wouldn't mind going to the gym but I am sure that's another few weeks.

So cross your fingers for me. Or send me kleenex.

Monday, November 6, 2017

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,...

Sunday, November 5, 2017

More on Life After Breast Cancer

Beth Caldwell is another story about life after breast cancer. But the really sad kind. She was diagnosed with breast cancer at age 37, which is three years before she would have gotten a mammogram. Unfortunately she had a huge factor going against her with her diagnosis. She was diagnosed at stage IV.

This is a very bad thing. This is not the good painted pink breast cancer. This is the really bad kind. This is the cancer that something like 7% (or so, I can't remember the exact number) diagnosis that women (and men) face.

When you are diagnosed at stage IV, you are already past the point where everyone else is at and where everyone else is trying not to get to. Their treatment is trying to keep them from getting to Stage IV. Beth didn't have that luck.

Now Beth is gone. She passed away on All Souls Day, November 2, 2017, 3.5 years after diagnosis. That is a very short time. If I can do math, she was just over 40 years old. She left a husband and two children.

Before her diagnosis she was an attorney. She left her work and became a mom and a cancer patient. That's a sucky life. The cancer patient part. Not the mom part.

I don't claim to know Beth. I have read her blog a few times.... but not every update, but most of them. But I feel for her. I can relate.

So there can be millions of women with pink boas walking and running their events who say they are lucky to be 'survivors'. But the sad side of breast cancer is people like Beth. She didn't make it more than a few years.

You ask how breast cancer sucks? This is the ultimate suck. I hate breast cancer.

Friday, November 3, 2017

Breast Cancer Changed Me Too

I like Joan Lunden. I mean I like what I saw of her on TV. She was very professional and did a good job on the air. I am not sure I would have 'volunteered' to have a mammogram on television, even if it was to raise awareness of breast cancer screening.

Now, three years after her diagnosis, she is through with treatment and says that having breast cancer changed her. She has started a website to educate women about the benefits of early detection.

Then another woman, much younger, Yolanda Jenkins, has also been diagnosed with breast cancer. She has created a platform to encourage young women to get checked and wants to get the age for mammograms lowered so younger women have access to this critical tool.

These two women make me think should I be doing something different? I mean I have a blog that's about me. I don't run around educating people about cancer. I know I talk about breast cancer and other cancers but I don't educate or advocate or anything... Should I be doing something different? I am not sure I could.

Thursday, November 2, 2017

Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Wednesday, November 1, 2017

Blatant Discrimination

I recently learned some surprising discrimination. A local committee part of the NHS in the UK has decided to institute what I call blatant discrimination.

"...one local health committee in the UK has announced a controversial policy "to support patients whose health is at risk from smoking or being very overweight."
For an indefinite amount of time, it plans to ban access to routine, or non-urgent, surgery under the National Health Service until patients "improve their health," the policy states, claiming that "exceptional clinical circumstances (will) be taken into account on a case-by-case basis."

The decision comes from the clinical commissioning group (known as a CCG) for the county of Hertfordshire, which has population of more than 1.1. million.
The time frame for improving health is set at nine months for the obese in particular; those with a body mass index over 40 must reduce the number by 15% over that time period, and those with a BMI over 30 are given a target of 10%.

The target for smokers is eight weeks or more without a cigarette -- with a breath test to prove it."

I could not believe this. Some 'holier than thou' sorts have clearly decided that they are better than those evil people who are overweight or smoke.

Look I was a smoker for far too many years to count. Its not an easy habit to quit. Smoking has been called more difficult to quit than heroin. It takes many people months or years and many tries to quit. Eight weeks to quit is a very tight deadline. And a breath test? Seriously? Like a breathalyzer?

I find the obesity one even more offensive. Is it my fault that I have managed to gain multiple pounds (so many that I find appalling) over the past twelve years? Is it because I have so many ailments? Is it because I am on so many medications with the side effect of 'may cause weight gain'? Is it because I like to make a nice dinner for my husband every night? 

Can I lose weight? With great difficulty. If I wasn't recovering from knee surgery I would regularly exercise. But that wasn't making me much thinner. Its very difficult for me to lose weight. And I am not the only person who has problems losing weight. There are many people with medical problems, metabolism issues, and more that would have to eat only lettuce leaves to lose weight. Some people just have a predisposition to being heavy.

Finally, the BMI is not a perfect measurement. There are many who disagree with it.

I cannot believe in this day and age, people in medical professions would blatantly discriminate against people who are fighting hard issues - quitting smoking or losing weight. And then denying them medical care based on these same issues. Well, at least I am not the only person who finds these policies horrible:

"The new policies came under immediate attack from experts and interest groups.

"Singling out patients in this way goes against the principles of the NHS," said Ian Eardley, senior vice president at the Royal College of Surgeons in the UK. "This goes against clinical guidance and leaves patients waiting long periods of time in pain and discomfort. It can even lead to worse outcomes following surgery in some cases."

The conversation has been going for some time, experts agree, but the question is the ethics -- and whether it would even work.
"Rationing treatment on the basis of unhealthy behaviors betrays an extraordinary naivety about what drives those behaviors," Robert West, professor of health psychology at the UCL Research Department of Epidemiology and Public Health, wrote in an email."

I am not alone but these are just blatant discrimination.

Tuesday, October 31, 2017

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.