Monday, October 16, 2017

The Good Breast Cancer Charities

As you are asked to 'pink' all through October, you are advised to give to the good charities and skip the pink crap. Charities are rated by Charity Navigator and Charity Watch. These two organizations list the following as the 'good' ones to give to:

Charity Watch

Charity Navigator
A special note is provided on the Susan B Komen Foundation (for a Cure):

"The charity received mixed scores from the watchdogs. Charity Navigator gives Susan G. Komen for the Cure a 3-star rating (out of four) and lists the percent of its expenses spent on programs and services at 81.6%.

Charity Watch gives the Susan G. Komen Breast Cancer Foundation a C+ rating with program percentage of 62%-77% and the cost to raise $100 of $12-$27." 

Based on these numbers Komen (for the Cure) would be very low on my list of donations. But if you do I am sure you will get a thank you note covered in pink ribbons.

In reviewing charities, the important things that are looked at include how much of the money they raise is used for their cause and their programs, as opposed to overhead which covers things like salaries and rent. Those highly paid executives at many big charities can easily change their percentage just by taking a pay cut.

So let me make a few comments here. First of all I find it interesting the differences in the two lists. This shows how objective this can be. But I am taking what was quoted in a USA Today article and have not checked the two sites lists myself. 

Second of all, I am not a fan of the National Breast Cancer Coalition Fund. These are the people who want to eradicate breast cancer by 2020. They have two years to go so I don't think its going to happen. And they do not focus on metastatic cancer, hence they are also known as #deadby2020.

Finally, my personal preference of where to donate would be: Breast Cancer Foundation, BreastCancer.org, or Dr. Susan Love Foundation.  

Sunday, October 15, 2017

Health Caused Limitatons

Over the years we all accumulate our health caused limitations. I have just a few. Due to thyroid cancer, I have no thyroid and am dependent on a daily pill for the rest of my life. And with any decongestant I have to ask the pharmacist if I can take them because they often say do not take if you have 'thyroid disease' so I need to clarify.

Breast cancer left with left arm lymphedema so no shots, blood pressure cuffs, IVs, or any pressure on my left arm. So when I had surgery last week, I had an IV on my right wrist and a blood pressure cuff above it.

I also have two bad knees, a bad back, bursitis in my hips, etc that try to slow me down.

But a royal pain in the ass is my knee brace. I am so limited right now in what I can do. I can't drive. My other knee has started hurting. I am stuck at home.  I am whiney and frustrated.

This too shall pass. I hope I get the green light to drive tomorrow and a different brace that actually fits.

But if its not one thing, its another. Our health conspires to limit us. We just need to ignore it and work around our limitations and keep going.

I just needed to whine. Sorry.

Friday, October 13, 2017

Recuperating (Or Being A Bad Patient)

I am recuperating from my surgery. It has been 8 days now. I am starting to get to the annoyed stage. The seriously annoyed stage.

First of all, I am stuck wearing this dumba$$ knee brace which does not fit. It is too big for me. I can't tighten the lowest strap to be useful. If I am wearing anything underneath it (including the TED compression stocking I am supposed to wear every day for the next three weeks - which is not happening), it just slides down my leg. So I am stuck wearing shorts. Today is a little chilly for shorts but that's why I have sweaters. I am supposed to wear it 24/7 except when showering.

Second, I believe I am supposed to be doing exercises. I do some sometimes. They are written on a piece of paper that is in a very safe space. When I find the safe space I'll make sure I am doing them as much as I should.

Third, I am supposed to take it easy. I am, mostly, sort of. Friday, the day after surgery, I did nothing productive. Saturday, we went to two estate sales and three yard sales. I got two beautiful antique canes - one with a brass eagle for a handle and the other with a brass duck head. Sunday, I made bread. Monday, I can't remember. Tuesday, I went to my father's doctor appointments and was out from 830am to 330 pm. I was tired when I got home. Wednesday I made home made bagels and set up both my looms. Thursday, I went to knitting and then came home and slept from 4pm to 5am. I think I tired myself out.

Fourth, I am allowed to fully weight bear on my leg provided a use a cane. I keep misplacing my cane. Its somewhere around here. I use it when I leave the house but the instant I come in the door, I put it down someplace.... I find it again before I leave the house again.

I may not have spent as much time resting my knee but I don't want to be bored. Bored people eat things like ice cream and cookies between meals. I can't wait for my appointment Monday. I am going to demand a new knee brace that fits and is less awkward. And I want to be able to drive.

Its been torture not being able to drive. But my friends have been nice and have been taking me places. I already have some lined up for next week if I can't drive.... If I can't drive, I might go crazy.

I don't think I am being a very good patient. But I am trying.

Thursday, October 12, 2017

The Importance of Learning About Your Health

Can you answer these three questions from the Brief Health Literacy Screen (BHLS): 
  1. How confident are you in filling out medical forms on your own?; 
  2. How often do you have someone help you read hospital materials?;
  3. How often do you have problems learning about your medical condition because of difficulty understanding written information?
They appear simple. Many people I think would say Very, Never, and Never. But then if you add in the complication of not knowing English very well, a lower level of education, or just being sick and not clear headed at the time, those could change easily to: Not at all, Often, and Frequently.

What is the result of this kind of problem? Longer hospital stays for one:

"Using the BHLS screen, 20% (1104/5540) had inadequate health literacy. Patients with low health literacy had an 11% longer average length of stay (6.0 vs 5.4 days). Among men, low health literacy was associated with a 17.8% longer length of stay, and among women, low health literacy was associated with a 7.7% longer length of stay."

Longer hospital stays result in more exposure to germs, bigger bills, less rest for the patient (who ever gets a good night's sleep in a hospital) which ends up with more patient stress.

A recent study showed all this and more. Read it here.

Wednesday, October 11, 2017

Tumor Size Doesn't Matter

All cancer tumors start small and end up bigger. This is logic that is clear as day.  Tumors don't show up 3 cm across out of nowhere.

A new study states that even small breast cancer tumors can be aggressive. Well duh. If all tumors start small, of course aggressive ones and indolent (slow growing) ones are included. I don't call this news. I just call this an exposure of logic.

When I was diagnosed with breast cancer I was happy to learn more about my tumor. Its hormone status (ER/PR) was important, Her2 status was important, and tumor grade was import. The grade is a scale of one to three on how aggressive a tumor is. (This is my non medical training kicks in.) If there are lots of dead tumor cells, that shows growth because tumor cells which are aggressive are growing fast and dying off fast. The presence of lots dead cells is an indication of this. An aggressive tumor warrants more aggressive treatment.

I was lucky. My breast cancer was average in many ways. It was ER+/PR+ - meaning I was a good candidate for hormonal therapy, Her2- - meaning I didn't require additional treatment of Herceptin, and grade 2 - meaning it was average on the scale of indolent to aggressive.

I had a friend who was diagnosed about the same time as me. She was gone in three years. Her cancer was about the same as mine except hers was very aggressive. That's the difference with an aggressive cancer.

However this study does provide some good information:

""This study shows that it's not only tumor size that is important for breast cancer patients but also tumor biology. All tumors in the study were small - less than 1 cm - and the lymph nodes were free of cancer (node negative), which in principle should be a signal of good prognosis. But nearly one in four patients - those identified as genomic high risk - derived benefit from chemotherapy.""

""Small node negative tumors can be very aggressive, even if they are classified as clinical low risk," said de Azambuja. "Tumor biology needs to be taken into account when deciding adjuvant treatments in this patient population. One cannot forget the patient's age, performance status, comorbidities and preferences during the discussion.""

Tuesday, October 10, 2017

The Road Through Chemo

Everyone's road through chemotherapy is a bit unique. We all face our demons of nausea, fatigue, hair loss, and emotional ups and downs differently. We struggle through. And then we somehow make it

I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:

"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”

These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.

“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."

He clearly starts faced with the fact that much of the advice for cancer patients comes from people who do not have a clue. Clearly the advice from NCI is in that category. This is one of the things that all cancer patients learn - people who haven't walked the walk, are unable to talk to the talk. They do not have a clue.

But as you read through his story you see how he learns to get through it. He gets a good social worker who gives him advice and supports him as he goes through his infusion. Her advice is one task a week - send one email. That makes things manageable. I can relate. I could do one thing a week while in chemo.

He learned that it is normal to deal with the emotional side of chemo. He meets a new friend along the way who told him when he went through chemo for lymphoma, he struggled as well emotionally. "“I found the nonphysical effects of chemo the hardest. Psychologically I fell apart.” I felt another flash of self-compassion. So it’s OK to be like this. I had been given a lifeline." 

Finally he makes it through. His brain starts to clear, he is returning to life. I cannot say returning to normal because you can't. I just really like his descriptions of his chemo adventure. He put into words what I could not - the ups and downs of cancer.

Monday, October 9, 2017

Trapped At Home

I haven't been so trapped at home since chemo. Then I was too sick to care that I spent my life inside watching TV, hanging out with the cat. Right now I have a giant brace on my leg and can't drive until next week.

My husband is home today, but its day five of 'togetherness' and its starting to get old. Its great that he's doing the laundry I sorted, saving me trips up and down our one flight of stairs. But we are running out of things to do together. He does have other projects he is working on.

Tomorrow a friend is rescuing me and taking me for coffee and then dropping me off at the hospital so I can go to my father's doctor appointments with him. The difference is I will be the one in the wheelchair, giving him a hard time about driving skills, instead of the otherway around.  But I will be out of the house for a good four or five hours.

Thursday another friend is rescuing me and taking me to my knitting group. That will keep me out for several hours again. And I get to see people and talk to them in person.

In the meantime, I am trapped at home with the cats - and the (damn) half dead chipmunks they keep bringing home. Because of my knee and lovely brace, I can't do much of anything. Standing is difficult for any length of time. Sitting is okay. Lying down with my knee up is best. This is very limiting.

I have the DVR and all the 'bad' tv I have recorded. I have tons of knitting I can do. I have to finish a weaving project and set up my loom again (if I can).

But I am not in a lot of pain. The cranky whiny stage has not yet appeared but could be looming in the background. Maybe its time to finish painting the kitchen... Or maybe not.

Sunday, October 8, 2017

New Research Which Could Have More Thought

There is always more research going on - especially cancer research. Especially breast cancer research. I swear sometimes the world is full of research labs papered in breast cancer research papers.

Anyway, this time I don't necessarily agree with this new research. In a ten year study, maybe not all breast cancer patients need an AND (Axillary Node Dissection) if they have a positive sentinel node with their lumpectomy. Why? Because if you are going to have chemo and full breast radiation, they would catch all the cancer cooties and nuke them anyway. Hmmmm.....

An AND can give you lymphedema.... which I have now.... the real reason for skipping this surgery. And who wants additional surgery anyway?

Okay so this study looked at around 900 women who had early stage breast cancer and one or two positive sentinel nodes and then were having chemo, radiation and hormonal therapy. They split them in two groups and followed them for ten years. After that time both groups had similar recurrence rates. This study did not include women who had mastectomies or suspicious or enlarged lymph nodes in a physical exam.

"To make sure that women have the appropriate lymph node surgery, the American Society for Clinical Oncology released guidelines on sentinel lymph node biopsy for people diagnosed with early-stage breast cancer. The guidelines say sentinel lymph node biopsy SHOULD be offered under these circumstances:
  • breast cancer in which there is more than one tumor, all of which have formed separately from one another (doctors call these multicentric tumors); these types of breast cancers are rare
  • DCIS treated with mastectomy
  • women who have previously had breast cancer surgery or axillary lymph node surgery
  • women who have been treated before surgery with chemotherapy or another systemic treatment (treatment before surgery is called neoadjuvant treatment)
The guidelines say sentinel node biopsy SHOULD NOT be offered under these circumstances:
  • the cancer is 5 cm or larger or locally advanced (the cancer has spread extensively in the breast or to the nearby lymph nodes)
  • the cancer is inflammatory breast cancer
  • DCIS treated with lumpectomy
  • the woman is pregnant
The guidelines also say:
  • Women with negative sentinel node biopsies shouldn’t have axillary node surgery.
  • Women with one or two positive sentinel nodes who plan to have lumpectomy plus radiation also don’t need axillary node surgery.
  • Women who have one or more positive sentinel nodes and plan to have mastectomy with no radiation should be offered axillary node surgery."
Well, I say whoop-di-doo to all this. Why? Because they do not raise the issue of younger women with breast cancer. I was under 50 when I saw diagnosed with breast cancer - otherwise I meet the criteria. And it was my second cancer before the age of 50 (which puts me in a special class of people). 

I think that while these recommendations sound great and I like it when guidelines are updated and progress is made. But I think this research clearly overlooks the group of younger women who should be regarded differently. Often younger women are diagnosed with more aggressive breast cancers than older women. Now you see my concern?

Saturday, October 7, 2017

I Don't Do Pink Things Except....

I don't do pink things. I detest things where if you had breast cancer you are supposed to cover yourself in pink, including a few boas, etc. I don't participate in them at all.

However, I have some breast cancer friends who started out with me on the Komen message boards back in 2007. When they screwed up the message boards, we all left and moved to Facebook where we have remained friends. A bunch of them in the Midwest started what they called BreastFest at a park in northern Indiana, near where some of them live.

Overtime, this has expanded to be an all day event at a local hotel. Last year I went on a road trip with a friend to go meet them all. They all wore pink because they ordered the t-shirt for last year. I didn't. I wore a green t-shirt. I didn't buy a t-shirt because I didn't want one. I wish I had. I was going to order one this year. But we didn't get to go.

My compatriot who did the driving and provided the car, is having the floors redone in her house so it didn't work for her. She didn't want to reschedule because it took long enough to talk her husband into the change in the first place. And I ended up having my knee surgery.

But I am going to miss them. Today they are meeting and will drink wine and eat 'healthy' food all day. Then it will be nap time before a big dinner. And they will play games - where I haven't laughed as hard as I did since. And generally have fun.

I would wear pink for this group. Its a wonderful group of women. I will definitely go next year. Its too far for me to drive myself so I need my compatriot. Its a pain in the ass to fly to because its 3 hours from any airport and I don't fly well anyway. And I would need to commit to being healthy enough to travel if I paid for plane tickets - this is why we drove last year because if we weren't healthy we could bail and not lose money. We stayed at my brother's house on the way out and the way back so other than gas money, we had no real expenses.

Anyway, I will miss the ladies this year and will wear pink for them next year when I am there.

Friday, October 6, 2017

Number Nine

Surgery number nine was yesterday. I thought the surgeon was going to clean out my knee arthroscopically so it would no longer catch and lock up. That was a good idea.

Everything went as planned - including me being STARVING by the time we got there at 1pm after not eating since the night before - until I woke up after surgery. That's when I found out the bad news.

Well its a good news/bad news situation. The good news is that the surgeon fixed my knee so it will no longer catch - which is amazingly painful when it happens. The bad news is the repair is more complicated than the original plan. Instead of a clean out, he repaired my meniscus. This surgery is not usually done on people over 25 but I think since the tear was where it was repair was better than removal. However, recovery is four to five MONTHS instead of four to five WEEKS. A 'minor' difference.

And I have a giant brace I need to keep on all the time except when showering (and I can't shower until tomorrow). This brace is so big it doesn't tighten up around my leg except near my knee. And, and, and, and, and, and,.....
This isn't the best picture but I took it lying in bed with my leg out straight in front of me. You will notice the TED stocking I am supposed to wear every day as well. Its still drying from when I washed it last night. It might take a few more hours to dry.

I will say this is the first surgery that I woke up to a 'surprise' since Number One in 1981 where it turned out it wasn't a 'goiter' and was 'thyroid cancer'. But that doesn't matter. This just sucks.

However, there is plenty of ice cream in my freezer. My husband is home for the next four days straight to take care of me. I can weight bear because of the stupid ass brace and my cane so I can get around pretty easily on the one floor of our house. The cat even slept on my knee last night (as he likes too) which was okay because of the brace so he didn't squish me.

Can you hear me being grumpy already? I have to double check when I can drive because its my right knee. And the pain level is fine. I already have pain meds and can take them when I want but I only needed one last night and am okay so far today. I think I need to get more ice to put on my knee. Crabbiness may prevail for the next few days.

Thursday, October 5, 2017

Reminder What Not To Say To Breast Cancer People

As part of the universal pinkification of October, Good Housekeeping magazine has a section on breast cancer (who knew?). But one thing they do include is a list of 15 things not to say to breast cancer people.
  1. You’re going to be fine
  2. Everything happens for a reason
  3. You don’t look sick – you look great
  4. My brother’s friend had breast cancer here’s what happened to her.
  5. That’s why I don’t use antiperspirant (deodorant, underwire bras)
  6. I hate my large breasts; I’d love to get rid of them.
  7. How did they find it? What stage was it?
  8. Have you tried cutting out sugar?
  9. Can I do anything for you
  10. You’re a badass! You’ll kick cancer!
  11. We could all be hit by a bus tomorrow
  12. Stay positive
  13. At least you have your hair
  14. I’m praying for you, miracles do happen!
  15. At least you’re single, and you don’t have kids to worry about.

Most of these I find to be just plain rude. If someone has cancer, any type, they are so stressed they do not care about most of these. Even asking them if you can do something for them can be stressful. They have to stop and think if they need anything, which they probably do, but can't think of, so you added more stress, and they just say 'nothing, thank you.' If you need more understanding here, go read the rest of the article at Good Housekeeping.

Just think before you say anything (and insert your foot in your mouth). The best thing you can say to any one with cancer is 'how are you feeling today?' A simple easy honest question.

Then say something like 'I'm going to the grocery store, can I pick you up some milk, etc? Don't offer to mow their lawn, just mow it. Offer to take their kids to school in the morning and bring them home.

In the meantime, go buy some Halloween candy to get ready for the real reason for the month of October.

Wednesday, October 4, 2017

Pre-Op Day

Today is pre-op day. Tomorrow I am having minor arthroscopic knee surgery. Its no big deal. An in and out procedure that should last an hour or so. Nothing significant. It is to repair my right knee which has been locking up for the last year or so.

What it does mean is that I am going to be limited in my abilities to get around for the next week or so. I do not plan on using crutches because I hate them (and I have lymphedema). I really hate crutches. We live in a raised ranch and I bought a can so I should be able to maneuver around the one floor by myself.

My husband has taken tomorrow and Friday off and then will be home for the three day weekend. This means five days of togetherness. (I think I need to come up with things for him to do so he doesn't 'hover' and drive me crazy.) It is great that he will be home with me because I know I will need some help. Its hard to carry things while using a cane.

I went to the library yesterday and got a stack of books and a movie "Hidden Figures" that I have wanted to see. I have also been filling the DVR with shows to catch up on. I have plenty of knitting to do as well. I did laundry and just have the socks left to sort before I am done.

I am going to the grocery store today and am going to get a chicken to roast for dinner tonight so we can eat leftovers for the next few days. I think I am organized.

This is surgery number 9 for me so I have been through it before. Not including multiple medical misadventures. I know what to expect for the most part. I know what I want to tell the anesthesiologist for which anesthesia did okay for me and which did not. I have figured out what to wear tomorrow - shorts so its easy to get dressed post surgery.

I have found that being organized is the most important thing when you are going to be laid up for a few days. I hate being dependent on anyone for anything. I have everything I need. I can always send my husband out for things we forgot or we can get food delivered (if we get bored with leftover roast chicken).

The one thing I do need to do today is to find out what time I need to be there. They are supposed to call me today with that information as well as the 'do not eat after midnight, no water two hours prior, etc'.

I hope for an early time so I can get it over with. The worst is sitting around waiting for your surgery time and being starving because you can't eat. 

Tuesday, October 3, 2017

Having Fun With Other Friends

Recently I blogged about being aggravated and frustrated when having lunch with a couple of old friends. I was very upset by the end of that lunch so much that I woke up aggravated and frustrated the next morning. I knew it was time for a change. I won't be spending much time with either of them any more. I know they are upset. Well I am upset too. Sometimes its like talking to a brick wall with some people.

Since cancer, I can no longer count the number of friends I have lost. There was one old friend who I reconnected with on Facebook after breast cancer. We were talking about lunch sometime, until I told her about my breast cancer and instantly she was no longer available. There are many others too.

I have also had people who have become so toxic and negative I can no longer emotionally afford to be in contact with them. I have blocked them on FB, blocked their phone numbers, and more. As my health declines I can't afford the stress of toxic and negative people.

So what have I been doing with my time? Making new friends and having fun with other friends - the nice supportive kind.

I've been busy. This week I have already been out for a nice dinner with a friend and her husband and son and my husband, out to lunch and shopping with another friend, and today I am going to the Garden Club. I have plenty of people to have fun with.

I don't need to deal with people who stress me out. I feel like this is a win for me.

Sunday, October 1, 2017

Pinktober

Its now Pinktober. It will be horrible. There will be pink on everything. There were even little pink ribbons on the bananas I bought last week. I was appalled but I didn't notice until I got home and it was too lazy to bring them back.

But please brace yourself and do not get sucked into the pinkification which will be rampant all month long. Please do not purchase anything or donate to anything that claims to support breast cancer unless you know the following:

  • The organization to which the money is going - are they a real organization that really will use the funds to provide what they said they will.
  • That the total amount of the money you think you are giving to a organization is really going to them. You need to check the fine print on the label to learn this. 
    • Is it $1, $5, or $10 or what amount going to them. Just because you spent $30 on something, what portion of that is going to support a cause. Its probably not the full amount.
  • Is there a maximum amount for the program? An example of this is that big companies will say '$1 from the price of this lipstick will be donated to XYZ organization, up to a total donation of $25,000 for the year'. Read the fine print again.
  • Don't purchase anything you really do not want or need. All this pinkification is designed to help sell more products. Its just a big marketing ploy. 
Breast cancer is the current 'cool cancer' and pink is such a 'pretty color' it can be splashed all over everything. But its just a big money maker for big industry. Not for the little peon breast cancer patients.

If you really want to support breast cancer, find a worthy cause - American Cancer Society, BreastCancer.org, or a local organization you know well. And send them a nice check. You can even put it into a nice pink envelope if you want.

Saturday, September 30, 2017

I Am A Klutz

Today I was at an event where I might have fallen a tiny bit. I must say I am not completely unfamiliar with the room because I was in that same room in 1989 or so at a friend's wedding. So I must have memorized the entire room layout then (although I know alcohol was involved at the wedding).But things might have gotten a little hazy since.

But my question is who carpets an entire room with the same carpet on everything except the dance floor? By the carpets rest of the room I mean stairs that go across the full length of the room and the DJ/band riser at the end of the space. In a dark blue carpet which shows no contours in any light. With no reflective tape or anything.

So I walked across the room, missing the riser. Then I walked back across the room to return and discovered the riser for the third time today. I might have caught a little air in this event. I did not do major damage to my body. I did land on my right knee and right thumb. I have a tiny scrape on my knee.

When I did take this tiny tumble, a couple of people asked me if I was okay. I said I needed a minute and tried not to cry in front of a crowd of strangers. But then I sat there. Then I finally stood up. And was really about to cry (stiff upper lip be damned).

But I made it home. I got in bed with a heating pad for my back and an ice pack for my knee. Three hours of bad TV later, I am feeling better and my husband is about to serve a nice home made dinner.

But I am still a klutz and will pay for this tomorrow.

PS by posting about stupid stuff, I can avoid some of the other issues in my life for a while

Thursday, September 28, 2017

My Cholesterol Improved

I have no idea what I did but my cholesterol is much better than it was a year ago. I don't know what I have done differently with my diet (I thought I had adopted a whole bunch of bad eating habits) but my total cholesterol dropped more than 50 points in the last year. Maybe I need a burger and fries for lunch today...

That was the good news. The bad news is I have referrals to three different types of doctors - ENT, eyes, and a pharmacotherapist.

The pharmacotherapist is going to review all the meds I am on. I like that idea. I have so many medications from so many doctors. My PCP is concerned about too many interact and why I am on them and how can we get rid of some. Finally someone is taking a look. One big part of the problem is my previous pain management doctor would just increase my meds without explaining or change to a new med with no explanation. Now my new pain management guy is actually talking about reducing some meds and has changed some already.

My PCP told me that a lot of my weird numbers like heart rate and others can be screwed up by all my medications. She sent me for a pile of bloodwork and an EKG since my last one wasn't so great.

So I thought it went well. I even lost 5 lbs. But I forgot to ask her one key question. Damn. I'll send her a message later.

So after cancer, I like this kind of doctor appointment. She looked at my big picture and can't find any reason I might drop dead tomorrow.

Wednesday, September 27, 2017

Off To My Primary Care

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

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

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

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

Tuesday, September 26, 2017

Sense of Humor

How is your sense of humor on a normal day? This is a serious question. Do you keep your sense of humor? Do you have a sense of humor? If you don't have a sense of humor, I think it would negatively impact your health issues.

Yes I have no training on any kind of medical or psychological information. But I do think a healthy sense of humor is very important as a coping mechanism. If you can crack jokes, you probably are not on death's door.... right now.

Personally, I think sense of humor should be checked, just like any other vital sign, at doctor appointments.

Monday, September 25, 2017

Aggravated, Frustrated, And More

Yesterday I had lunch with two friends who I have known for a very long time. One since the 1970s and the other since the 1980s. While I have sensed over the years they do not understand what I am going through. Yesterday revealed the truth. They do not have a clue. I was so aggravated when I left lunch and I woke up aggravated about it this morning. They were insensitive, self centered, and ignorant of my limitations.

I made a lunch reservation and had hoped to be there first so I could get a table with chairs and not a padded bench, which can sometimes be difficult for my back. As my friend, A, was already seated, I decided I wasn't going to make a big deal out of it as the bench seemed okay at first.

We chit chatted a few minutes waiting for B to show up. She was late. She is always late. She is incapable of getting anywhere on time. I find this very frustrating because I am limited to how long I can be out with my health issues. She doesn't get it.

When B showed up, she told us why she was late: she did text us as she was about to leave but then she had to put everything in her car. Then she realized she forgot her phone so she went back. Finally she realized that she forgot her laptop and, as she was going to work after lunch, she would have to go back and get it. And every statement she makes she knocks her hands on the table so it makes it shake which hurts my back. I just sit with my hands off the table. She always bangs around.

Lunch was very good. We took our time so we could chat and catch up. We split a dessert and kept yakking away, with the table being pounded on by both. I think they do it without realizing it.

A few statements were made by them: 'She (a relative of a friend) must be very sick because she takes 20 prescriptions'. (I have that many, or more). 'Why doesn't your back get better?' (For how many decades do we need to talk about this?)

Eventually, after almost 2 hours, I said something about my back hurting. B said 'I thought we were going to have a nice long lunch'. How long is a long lunch - 5 hours? Then A pulled out a set of probably 50 pictures to show us, in great detail, one by one, with descriptions.

Finally I just said I have to go because my back is killing me. I made a point of standing up. But then we had to stop so the hostess could take a group picture of us..... Arghhhh. I just needed to get in my car and its supportive, contoured car seat, with no more vibration from the table.

What upsets me the most is that they just do not understand. They claim to be some of my oldest friends but have no idea of what I deal with day to day. I do not expect my friends to keep up with every detail of my health. I just want them to have a general understanding of my health and that I have many limitations. And that I am not getting better anytime soon.

What this means in the end, I will not spend as much time with them in the future. If they can't realize that I have limitations and am not very helpful. I don't think they are my friends any more.

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: nhs.uk/breastscreening.
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....

Damn.

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

Digesting

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

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

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

Thursday, August 24, 2017

Frustration

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

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

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

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

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.