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 WatchBreast Cancer Research Foundation - a grade of A+, 90% of their funds go to programs (not overhead), and it costs them $7 to raise $100.National Breast Cancer Coalition Fund - A, 83%, $13Breast Cancer Prevention Partners (Formerly Breast Cancer Fund) - A-, 77%, $13Also recommended:Cancer Research InstituteMemorial Sloan Kettering Cancer CenterPrevent Cancer Founda...
Source: Caroline's Breast Cancer Blog - October 16, 2017 Category: Cancer & Oncology Tags: donating organization pinkification Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - October 15, 2017 Category: Cancer & Oncology Tags: aggravation being a patient frustration limitations Source Type: blogs

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 bel...
Source: Caroline's Breast Cancer Blog - October 13, 2017 Category: Cancer & Oncology Tags: behavior being a patient boring cooking knee surgery Source Type: blogs

The Importance of Learning About Your Health
Can you answer these three questions from the Brief Health Literacy Screen (BHLS): How confident are you in filling out medical forms on your own?; How often do you have someone help you read hospital materials?;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 F...
Source: Caroline's Breast Cancer Blog - October 12, 2017 Category: Cancer & Oncology Tags: education hospital knowledge learning medical care Source Type: blogs

Tumor Size Doesn't Matter
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 treatment...
Source: Caroline's Breast Cancer Blog - October 11, 2017 Category: Cancer & Oncology Tags: breast cancer treatment cancer research tumor Source Type: blogs

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 itI 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 thro...
Source: Caroline's Breast Cancer Blog - October 10, 2017 Category: Cancer & Oncology Tags: cancer bonds cancer treatment chemotherapy medical advice Source Type: blogs

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 docto...
Source: Caroline's Breast Cancer Blog - October 9, 2017 Category: Cancer & Oncology Tags: being a patient boring knee surgery loneliness Source Type: blogs

New Research Which Could Have More Thought
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 rareDCIS treated with mastect...
Source: Caroline's Breast Cancer Blog - October 8, 2017 Category: Cancer & Oncology Tags: breast cancer breast cancer treatment young cancer patients Source Type: blogs

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 ona road trip with a fri...
Source: Caroline's Breast Cancer Blog - October 7, 2017 Category: Cancer & Oncology Tags: breast cancer bonds friends pinkification travel Source Type: blogs

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 repa...
Source: Caroline's Breast Cancer Blog - October 6, 2017 Category: Cancer & Oncology Tags: aggravation changes crabbiness knee pain knee surgery recovery Source Type: blogs

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.You ’re going to be fineEverything happens for a reasonYou don ’t look sick – you look greatMy brother ’s friend had breast cancer here’s what happened to her.That ’s why I don’t use antiperspirant (deodorant, underwire bras)I hate my large breasts; I ’d love to get rid of them.How did they find it? What stage was it?Have you tried cutting out sugar?Can I do anything fo...
Source: Caroline's Breast Cancer Blog - October 5, 2017 Category: Cancer & Oncology Tags: being a patient Halloween pinkification Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - October 4, 2017 Category: Cancer & Oncology Tags: knee pain organization planning surgery Source Type: blogs

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 bre...
Source: Caroline's Breast Cancer Blog - October 3, 2017 Category: Cancer & Oncology Tags: friends having fun stress Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - October 1, 2017 Category: Cancer & Oncology Tags: donating pink washing pinkification pinktober research Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - September 30, 2017 Category: Cancer & Oncology Tags: avoidance blogging falls pain Source Type: blogs

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 w...
Source: Caroline's Breast Cancer Blog - September 28, 2017 Category: Cancer & Oncology Tags: being healthy doctor appointments doctor questions Source Type: blogs

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 specialis...
Source: Caroline's Breast Cancer Blog - September 27, 2017 Category: Cancer & Oncology Tags: being a patient doctor appointments stress Source Type: blogs

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. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - September 26, 2017 Category: Cancer & Oncology Tags: humor Source Type: blogs

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 decid...
Source: Caroline's Breast Cancer Blog - September 25, 2017 Category: Cancer & Oncology Tags: aggravation disappointment friends idiots stupidity Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - September 23, 2017 Category: Cancer & Oncology Tags: balance sanity stress Source Type: blogs

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 hascancelled 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 a...
Source: Caroline's Breast Cancer Blog - September 22, 2017 Category: Cancer & Oncology Tags: #LadyGaga fatigue fibromyalgia pain levels Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - September 21, 2017 Category: Cancer & Oncology Tags: cancer history cancer treatment crankiness Source Type: blogs

Well, Crapola!
A few weeks ago, I posted about whatmy 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 biol...
Source: Caroline's Breast Cancer Blog - September 20, 2017 Category: Cancer & Oncology Tags: aggressive ailments arthritis treatment medical crap rheumatoid arthritis Source Type: blogs

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 BreastsAll 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 SymptomsThe most...
Source: Caroline's Breast Cancer Blog - September 18, 2017 Category: Cancer & Oncology Tags: breast cancer cancer detection cancer screening mammogram Source Type: blogs

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:Do not interrogate them daily on what's the latest from their doctor Do not tell the world every little detail you interrogated out of them. Its not your story to tell.Do not tell them your cousin's hairdresser's uncle's neighbor's son had the same thing and their treatment was what ...
Source: Caroline's Breast Cancer Blog - September 17, 2017 Category: Cancer & Oncology Tags: diagnosis helping not helpful sharing Source Type: blogs

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 thatdoctor 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 ...
Source: Caroline's Breast Cancer Blog - September 16, 2017 Category: Cancer & Oncology Tags: being a patient breast cancer treatment surgery uncertainty with doctors Source Type: blogs

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 m...
Source: Caroline's Breast Cancer Blog - September 15, 2017 Category: Cancer & Oncology Tags: google rheumatoid arthritis symptoms Source Type: blogs

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 theRelationships 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 ga...
Source: Caroline's Breast Cancer Blog - September 14, 2017 Category: Cancer & Oncology Tags: being a patient clinical trials medical research Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - September 13, 2017 Category: Cancer & Oncology Tags: being a patient enjoyment fun Source Type: blogs

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 ondevelopment 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 a...
Source: Caroline's Breast Cancer Blog - September 12, 2017 Category: Cancer & Oncology Tags: cancer costs medical research medication costs Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - September 11, 2017 Category: Cancer & Oncology Tags: breast cancer treatment doctor appointments follow up oncologist Source Type: blogs

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 sec...
Source: Caroline's Breast Cancer Blog - September 10, 2017 Category: Cancer & Oncology Tags: living with cancer planning Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - September 8, 2017 Category: Cancer & Oncology Tags: chemotherapy side effects Source Type: blogs

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 did...
Source: Caroline's Breast Cancer Blog - September 7, 2017 Category: Cancer & Oncology Tags: doctor questions pain levels pain management Source Type: blogs

Breast Cancer Treatment Benefits
Recently it was announced in a draft proposal that the UK'sNHS 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 ...
Source: Caroline's Breast Cancer Blog - September 4, 2017 Category: Cancer & Oncology Tags: breast cancer treatment metastatic cancer quality of life Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - September 3, 2017 Category: Cancer & Oncology Tags: brain cells pain levels pain management Source Type: blogs

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 have...
Source: Caroline's Breast Cancer Blog - September 2, 2017 Category: Cancer & Oncology Tags: being healthy diet food Source Type: blogs

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 c...
Source: Caroline's Breast Cancer Blog - September 1, 2017 Category: Cancer & Oncology Tags: dying hospice palliative Source Type: blogs

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 s...
Source: Caroline's Breast Cancer Blog - August 30, 2017 Category: Cancer & Oncology Tags: doctor questions falls knee surgery Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - August 29, 2017 Category: Cancer & Oncology Tags: aggravation ailments frustration Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - August 27, 2017 Category: Cancer & Oncology Tags: being a patient doctors Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - August 26, 2017 Category: Cancer & Oncology Tags: being a patient coping medical news Source Type: blogs

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 acentury 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 someon...
Source: Caroline's Breast Cancer Blog - August 24, 2017 Category: Cancer & Oncology Tags: cancer vaccine fibromyalgia frustration medical research Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - August 22, 2017 Category: Cancer & Oncology Tags: being a patient clinical trials medical research uncertainty with doctors Source Type: blogs

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 issuesand 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. Afew examples are:" ... [RA]inflammation can result in conditions affecting skin, heart, lung, eyes, mental health, etc. Conditions likeosteoporosis, cataracts,depression, cancers, etc. are more common. And add to that infection based conditions like influenza, pne...
Source: Caroline's Breast Cancer Blog - August 21, 2017 Category: Cancer & Oncology Tags: ailments being a patient comorbidities Source Type: blogs

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 chang...
Source: Caroline's Breast Cancer Blog - August 20, 2017 Category: Cancer & Oncology Tags: bias cancer bonds discrimination fear of cancer Source Type: blogs

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 ...
Source: Caroline's Breast Cancer Blog - August 19, 2017 Category: Cancer & Oncology Tags: annoyance cats husband lack of sleep rest Source Type: blogs

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 ofinformation 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...
Source: Caroline's Breast Cancer Blog - August 18, 2017 Category: Cancer & Oncology Tags: cancer diagnosis cancer treatment chemo brain emotional toll ptsd Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - August 17, 2017 Category: Cancer & Oncology Tags: doctors endocrinologist thyroid cancer young doctors Source Type: blogs

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...
Source: Caroline's Breast Cancer Blog - August 16, 2017 Category: Cancer & Oncology Tags: relaxed unplugged vacation Source Type: blogs