Tuesday, January 31, 2017
I think I cared more about it when I was working full time. I didn't want any potential employer to know that I had cancer because, even though people are not supposed to discriminate they do. If you are looking at two potential employees who have the same credentials, the one with a history of cancer will probably not be selected because they might 'get sick again'. This is a reality all of us cancer people face regularly.
Now I don't work any more. I have told more people about my cancer history than not. I don't really care if people know. I'm am doing okay these days mentally so I am not stressed about it.
My cancer history, and other chronic medical crap, isn't going away anytime soon so I just need to be me. Hiding it doesn't benefit anyone. Talking about it and recognizing it as the part of my life, that it is, is much healthier as far as I am concerned.
Monday, January 30, 2017
The biggest plans for this week are for devices:
First I am getting a CPAP machine today. I am not looking forward to it. I have no idea if I will be able to sleep with something on my face. But if it makes me sleep better I am happy. Sleeping better can help you lose weight and feel rested. I would be happy with either result. I get the machine today and have to pay a total of about $200 over the next 9 months to pay for it which isn't bad. But if it doesn't work out for me I can return it.
The other device is a mini TENS machine for pain relief. Yesterday, I was a sucker and fell for a sales pitch at a Home Show for a Magic Massage Ultra from Enovative Technologies.
It even came with 'slippers' that I can use on my feet (but you can't walk in them). Otherwise its about the size of an old iPod Nano so I can stick it in my pocket and walk around the house with it on. Right now its on my shoulder which is a bit sore today.
So I am taking advantage of technology to help me be healthier. I am already living better through chemistry due to the amount of pills I take. So this is just the next step.
Saturday, January 28, 2017
After dinner, I made a mistake. I should have gone to bed and not sat down to watch TV by myself. This was the conversation:
Me: I'll just watch a little more TV and then go to bed.
Husband: Don't fall asleep in the living room (or you will be cranky tomorrow because your back will hurt.
Me: Of course not. I'll be there soon.
My inner self: Of course I'll be there in a few minutes but I need to get comfy for a bit.
30 minutes later:
Husband: Don't fall asleep out there. You will be cranky. Come to bed.
Me: I'll be right there. Don't bug me.
My inner self: Just a little more snoozing.
Husband: Are you sleeping?
Me: No. I'm still watching TV
My inner self: I'm still watching TV through my closed eye lids.
15 more minutes later:
Husband: Wake up and come to bed!
Me: I'm not sleeping. I'll be right there.
My inner self: Its way too comfy here.
Husband: I warned you.
Another hour later:
Me: Damn, I have to go to bed now.
This morning my back might be a bit sore. But the big problem is I ended up going to bed too late to take a sleeping pill and didn't sleep well again last night. Tonight, I will not fall asleep watching TV.
My husband just read this and laughed. I said to him: "you were right". He then gave me a hard time about that too.
Friday, January 27, 2017
"Overall, 45 percent of participants reported severe or very severe forms of at least one of these side effects. When women got chemotherapy, the odds of severe side effects were twice as high, though the side effects were just 30 percent more likely when chemo was paired with radiation.
“We did know that some of these side effects were associated with these treatments, but we did not know how severe or how common these side effects were,” said study co-author Dr. Allison Kurian, a researcher at Stanford University School of Medicine in California.
“I found it striking that nearly half of all women treated for early-stage breast cancer reported suffering toxicity that they considered severe or very severe,” Kurian added by email. “This emphasizes the prevalence and seriousness of the problem.”"
"...The results should encourage doctors to consider when patients treatment regimens might be to achieve the same survival benefit with side effects..."
"“The treatments we have for cancer are very effective, but there is a growing recognition of the ‘collateral damage’ that can accompany these treatments,” said Dr. Shelley Hwang, a researcher at Duke University in Durham, North Carolina, who wasn’t involved in the study.
“Patients should recognize two things: first, that cancer treatments involve trade-offs; second, that some toxicities can be long-lasting,” Hwang added by email."
Thursday, January 26, 2017
He did tweak some medications but asked me what I thought about it instead of just saying 'up that dose' or 'here's more pills'. I am going to have injections in my back in a couple of weeks and follow up after that.
There is such a difference when a doctor listens to what you have to say, discusses things with you, and seems like he really wants to make you feel better. The moral here is find a new doctor if you don't like your current one.
Tuesday, January 24, 2017
"Approximately 70% of breast cancers are estrogen receptor positive which means they feed on the hormone estrogen. Breast cancer drugs such as tamoxifen and the aromatase inhibitors work by limiting access to estrogen thereby starving the cancer. Research published yesterday in the journal Nature Genetics indicates that some breast cancers treated with aromatase inhibitors evolve to produce their own supply of estrogen rendering the drug treatment therapy ineffective."
I didn't want to know that. What it means that while I am taking Femara, the dumb ass cancer cells could be finding their new food supply.
After my breast cancer diagnosis, chemotherapy and radiation, I was put on Tamoxifen for two and one half years and then switched to Femara. In 2015, I had hit the five years on Femara and was, after some discussion, taken off it by my oncologist.
We talked about several issues with this including the potential benefit of staying on it even though it wasn't proven yet. But because of my issues with pain, we decided it might be better if I went off it. The thought was that sometimes Femara causes problems with joint pain and since I have so many issues with pain, who knew maybe it would help.
In 2016, last summer, there was new research which said staying on it for ten years was better than five. And I hadn't noticed any less pain with it. So I went back on it.
Now this new research makes me feel 'unsafe'. That is not good thing for a cancer person to feel 'unsafe'. Cancer people want to feel safe. They want to feel that their treatment is protecting them as much as it can. Why take it if it doesn't protect you? If the dumb ass cancer cells want to evolve and go around the treatment, why am I taking it?
Thank you for this research. Not really.
Sunday, January 22, 2017
Because I had an awful cold over the holidays , we postponed Christmas. It was yesterday for our family. It meant a ton of cooking, houseguests, and a big family meal with three generations. It was nice. But I am exhausted. We have enough leftovers for a week. That means I don't have to cook all week. And can nap. Daily. I am exhausted (did I say that already?)
Friday at the gym I was seated on the stepper next to one of the local 'characters' who reminded me that we need to treasure those family events because not everyone will be there forever and we need to appreciate them why they are here.
Yesterday I enjoyed time with my family. Then this morning I woke to the sad news that a friend who I met through Relay for Life in 2009 (I think) while she was finishing high school and was of the key people involved. After she finished high school, she went to New York for a while until she started having some digestion problems. She came home and found she had liver cancer. She had multiplesurgeries, months in the hospital, and lost her life this morning at age 25.
A death at that age reminds me of the advice at the gym, appreciate your times with those you care for.
Friday, January 20, 2017
Im at the gym,blogging during cardiovascular. My laptop is having another momentary lapse after downloading Windows 10 updates. The guy at the computer repair place says it might be hardware. I disagree and am thinking in the old days I would have booted from a floppy and recovered. But since floppies are now obsolete, I can't use that option. So I am stuck with my tablet and can't access my non-backed up files on my laptop.
In addition to my computer issues, it's been one hell of a week. Basically I had an unexpected cancer freak out for delusions in my brain but am fine. It looks meant four doctor appointments and tests to discern the reality which showed how much of an idiot I can really be.
Also we are having a belated Christmas dinner because I was so sick with a cold in late December. This means houseguest and a family dinner for 11 tomorrow and cooking this afternoon when I would rather take a nap.
In addition to the gym, I have already been to a doctor appointment and am heading to the gas station, grocery store and library before heading home.
But it will be nice to see everyone. We will also continue the 'no politics at the dinner table' rule so we can find out how everyone is doing instead of rehashing political opinions.
My goals for next week are to recover from this week and nap daily if I can.
I can't write any more because I am single finger typing on my tablet screen and it's too complicated for me.
Wednesday, January 18, 2017
We all have our best friends, our close friends, our coffee pals, our nod across the street friends, and our sort of friends. Then us special people have our cancer friends.
I have two best friends, one from college who has lived 1000 miles away for the last 20+ years. We get together as often as we can, to cause trouble until about 9pm when we get tired and go to bed early. My other best friend lives about half an hour away. We can't get together to often because she has a big career and child and her husband works long hours as well. We do get together for lunch and shopping as much as we can. Both of them are the ones I call to catch up and talk about life.
But then I have cancer friends. They are the ones I get together to talk about life, cancer, and the havoc it has wreaked on out lives. They are also the ones we call when we have those momentary cancer freak outs. You can't have cancer and never freak out. It's just not possible.
It doesn't matter how long it's been since you have talked to your cancer friends, because they will answer the phone and tell you that you aren't crazy. They will virtually hold your hand at the worst moments in your life. Because they know you will do it for them.
What is the Saying? Hold your friends close and your enemies closer? It should be added that you should hold your cancer friends even closer.
Tuesday, January 17, 2017
I found this picture and article and then learned about the organization Worldwide Breast Cancer today. (I thought I knew about all breast cancer organizations, but obviously I am not as smart as I thought.)
It's not a new concept but it uses a dozen lemons to show what breast cancer can look like. Who knew it could be so easy to show women what to look for instead of thee vague 'something different'. This started 15 years ago and has been translated in 70 languages. And if you go deeper into their site you can see more in depth explanations.
Monday, January 16, 2017
My husband has a long weekend so yesterday we took a day off. Together to just hang out and relax. It was nice.
We drove up to the ocean. It was high tide , windy, and cold. But we walked a little on the beach. I made a big mistake and turned my back on the ocean . (NEVER turn your back on the ocean.) A wave came up behind me and I got sea water and sand in my shoes. Not a good idea. But then my husband got the bright idea to put my socks on the dashboard in the sun. And I turned on the defroster and dried my socks. And dumped the sand out of my shoes.
Then we did a little shopping, had an unhealthy late lunch with view of the ocean and came home. We just needed a day together.
It was a nice day.
Saturday, January 14, 2017
Life on a medical roller coaster sucks. As a potentially sane person you do your best to tamp down any part of those 'what if' fears during the day time. This is a big part of learning to cope with a crappy medical diagnosis, especially a cancer one.
But then comes night time. You are trying to sleep and you dream about 'bad things'. All those evil little 'what ifs' come lurking into your head. Then you can't sleep. Then you are cranky because you are tired. And you can't control your brain because you didn't get enough rest.
Friday, January 13, 2017
I also like the idea of no pre-existing condition clauses, young adults can stay on their parents insurance longer, and no lifetime insurance caps. And I want all of these items to stay. I also want every American to be able to get health insurance if they want.
I would like to see changes that help reduce costs of insurance and not to have huge premium increases allowable. I would like to see changes where medication costs are reduced as they are one of the single largest factors causing such high increases.
What I dislike about the proposed changes are the following:
- I feel that the changes are being rushed by the new administration. I have heard that the changes will happen within two weeks and it will be comparable plan. I just can't see that happening so fast as it impacts millions of people. No changes will work unless it is properly planned so that patients (the public) are not left hanging without insurance.
- I believe it is just partisanship that is causing the rush to make the changes. People did not like the former president so they want to get rid of his signature legislation as fast as they can.
Thursday, January 12, 2017
I got online immediately (probably within a week of my diagnosis) and met so many people who were already through most of treatment and were diagnoses up to a year or two before me. Now I am still in touch with them and watch them celebrate ten years out from their breast cancer diagnosis. I am happy for them but I am not sure how I feel about me.
Honestly I just cant see myself wanting to celebrate ten years since my breast cancer diagnosis. I don't think I have it in me.
When I was diagnosed with thyroid cancer in 1981 at 19 I always told myself I would throw a party and finally talk about it with everyone when I was 20 years out. That didn't happen. So I said at 25 years out. That didn't happen either. Then I was diagnosed with breast cancer, my health fell apart and I am not in the mood for celebrating anything.
I mean I appreciate that I am still here but not so sure I need to throw a party or celebrate in anyway.
Tuesday, January 10, 2017
First of all, we are all aware of the issues of over treatment for breast cancer and other ailments. Technology is advanced to the point that it can find little teeny tiny things that may or may not turn out to be nasty. Second of all, the standard these days is to treat all these potentially bad things as bad things because there is no way to know which are good and which are bad.
And that is my point. Since we don't know which ones are bad (i.e. potentially fatal) or not going to do anything bad, how did they come up with this statistic? That one-third of diagnoses are over treated.
The article cites a Danish study which showed an over treatment rate of 2.3%. The American College of Radiology also states the rate is there but definitely lower than what is cited in this new 'study'.
So this new 'study' is a piece of crap designed to scare the crap out of all of us breast cancer people. We are the ones that hear a 90% survival rate and convince ourselves we are in the 10% so of course we are all going to think that that we are in the one-third that was over treated.
I have one request: breast cancer research should be done to figure out what could be bad and what won't be.
Monday, January 9, 2017
The second case is the one of the CEOs of New England Compounding Center who is on trial for 25 counts of second degree murder as a result of the national outbreak of fungal meningitis in 2012 which killed 64 people.
"In 2014, federal prosecutors charged 14 former owners, pharmacists and pharmacy technicians of NECC in connection with the tainted steroids. The racketeering indictment alleges that pharmacists failed to follow industry standards for cleanliness, used expired ingredients, and failed to test drugs for purity before sending them to hospitals and pain clinics. It also alleges that employees falsified logs to make it look as if the pharmacy's so-called clean rooms had been disinfected when they had not."
These are not nice people who did this. I am glad their executives are being punished. Seriously. You cannot expect me to believe that the employees came up with this on their own. I am sure that the orders came from above to cut corners.
Executives who order people to do wrong should be held accountable for the results. I am going to follow this trial as it unfolds.
Sunday, January 8, 2017
If you have a chronic illness (or ten) you have a greatly limited ability to do much of anything. Learning to accept your limitations is an important part of coping with your ailments.
Yesterday I met a friend for lunch and then we went shopping for just over an hour (because it started snowing like hell and we wanted to get home before the roads got bad). Then I needed a three hour nap. And today I am still exhausted.
But I am happy I am tired because I did a fun thing. As opposed to going to the grocery store and then needing a nap.
My life is a balancing act. I balance the exertion with recovery. I could spend all my time doing nothing, which would not be good mentally or physically. I wouldn't be in any shape to have any strength to take care of what I need to do. And emotionally I would be a wreck. Or I could work as much as I possibly could, and I wouldn't have the energy to take care of myself and would be in worse shape.
Or I could do what I can, laundry, groceries, and the gym three times a week (which is taking care of me) and then resting and recovering as needed. I spread out my exertion. My husband does all the heavy lifting and I do the laundry and groceries - but he carries them up and down stairs for me.
But sometimes I can't do even the basics because I need the rest. That is what the cost of exertion is to me.
Saturday, January 7, 2017
"I totally disagree with the premise that people must actually have a disease to understand or help those with the disease. Sensitivity is a wonderful characteristic and we hope that our care givers have it. But expertise, with or without sensitivity, is invaluable,and may spell the difference between survival or not."
Friday, January 6, 2017
But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.
I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.
It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,
As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.
Thursday, January 5, 2017
The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.
I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.
Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.
There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.
A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.
Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!
Wednesday, January 4, 2017
An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.
"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.
This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.
I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."
Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.
Tuesday, January 3, 2017
My husband tells me to relax and feel each body part slowly relaxing and then just close your eyes and fall asleep. I have tried everything you can think of, including and not limited to: exercise, sleeping pills, new bed, etc. I have even counted sheep.
Two years ago my doctor sent me for a sleep study that came back as no apnea or anything. This year she sent me for another one because of my fatigue issues. That one came back with apnea so I was sent for a CPAP study and I just got the results: It was only partially successful. This means I don't necessarily get a CPAP and I get a new doctor. I am being referred to a sleep disorders doctor.
Just what I need, another doctor. I can't wait. But if they can help me get a good night's sleep regularly I'm happy.
Monday, January 2, 2017
Sunday, January 1, 2017
Over at 'The Big C and Me', I read today's post by Renn about 'Five Years and Counting' and she included the American Cancer Society's statistic about survival rates for stage II breast cancer. Then I read this post about cancer people mis-interpreting risk and worrying too much - When Does Worry Outweigh Risk. The article starts with:
"For patients with breast cancer — even after treatment — worries about risk are common. Patients wonder, could the cancer come back? Will it spread throughout the body?"
"They found 36 percent of the DCIS patients and 25 percent of the low-risk patients substantially overestimated their risk of distant recurrence.
Women who overestimated their risk were three times more likely to report worry about recurrence. They had higher distress scores and lower mental health."