Sunday, July 31, 2016

Less Technology

We are away on vacation (note to burglars: we have a house sitter and two anti-burglar cats) and I have less access to technology:
  • My phone is dead. I mean the battery is dead. I brought the wrong charger so it won't charge. As a backup we have my husband's phone but its not mine so I won't be using it much.
  • There is one TV in the house we rented. It is downstairs and there are 7 of us now and will be 11 of us later so that means not a lot of tube time.
  • All the plugs in this house (built in the early 1800s) are two prong. All the computer chargers are three prong. Dead batteries will probably occur.
And I don't really care. I can live without technology (as the withdrawal begins). We are at the beach. I have a pile of library books. It will do me good to unplug. We will have to do things like talk to each other.

I do want to take pictures so without my phone I might just not. That's okay. We are with family so other people can take pictures too. 

It also means I can't obsess over any new ailment because I can't just google it. (This is a very good thing.) I'll just pretend I'm healthy and any new ailment will magically go away like for normal people.

I think we spend too much time online, looking at screens and we don't look at the world around us. (Think of the people who have walked or driven into things or off things because they are looking at a screen. Or the groups of teens who sit together but look at screens at text each other instead of talking.)

I am happy to be unplugged. I will blog but I will also go to the beach. The beach just might be more important (and is a five minute walk).

Friday, July 29, 2016

Social Media Helps Breast Cancer Patients

Here's a surprise for us! Social media helps breast cancer patients.... And it took a research study to tell them that. How many of us went online for support after breast cancer to the online groups at Komen, Breastcancer.org, or many other sites in the last decade? I know I did. I also started blogging and looking for offline support services.

We've know about this for a while now. But it took a bunch of scientists a while to figure this out.

"Women who communicated online the most felt the most positive about their choices about treatment. They also said their decisions were more deliberate, and they were more satisfied with them, according to the study."

And can I add the decisions we made by asking our peers who had been through the same thing were a lot more educated than those of us who went along with what our doctors told us to do because we could hear it from our peers.

"But the findings don't prove that using social media outlets like Facebook and Twitter will benefit all breast cancer patients, and the researchers expressed a note of caution."

However the scientists still have doubts because they need more research. Me, I can tell you that I was happy when I learned to ask questions of my peers. 

""For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care,...""

Okay the internet has changed many things including the practice of medicine and the behavior of patients. Why should this be a surprise? We go online to post pictures of our cats and to ask questions about the decisions facing us as part of our cancer treatments.

Thursday, July 28, 2016

Star Trek Tricorder

Do you remember the Star Trek Tricorders? No not the phasers (always set to stun) but the tricorders that could diagnose people instantly of cancer or all sorts of other ailments. Dr whatshisname had one. I would love it if they were available to diagnose me and skip all the medical misadventures that make our lives so 'fun'. But it is really possible? I don't know at this point.

Google's biotech section, Verily, said that they could develop one in six months. That was three years ago and it still doesn't exist. (Who woulda thunk?)  And based on what has been said by a former employee that if employees said it was a bit 'out there' they were frozen out of future decisions.

"Tricorder is not the only misfire for Google’s ambitious and extravagantly funded biotech venture, now named Verily Life Sciences. It has announced three signature projects meant to transform medicine, and a STAT examination found that all of them are plagued by serious, if not fatal, scientific shortcomings, even as Verily has vigorously promoted their promise.

The Tricorder, as Conrad and others at Verily call the device, is “in the realm of not only science fiction, but beyond that — science fantasy,” said David Walt, a Tufts University chemistry professor and nanoscience expert who met with Verily scientists and engineers last year to share his concerns. “And I’m not sure it will ever be science reality.”"

Science fiction or science reality?

"Verily appears to be having more success with less world-changing projects, but it still chooses to showcase its most ambitious ones — perhaps, some critics suggest, to promote itself as a company poised to defeat disease.

Wednesday, July 27, 2016

I forgot to blog

Okay, I am a loser. I completely forgot to blog. I went to the gym this morning, two doctor appointments, lunch in the lovely hospital cafeteria and blood work. Blood work was a tiny bit exciting when I left and got to the elevator and found out there was blood dripping down my arm. According to the tech, this kind of thing happens a couple of times a day. (Really?!)

Now I am exhausted. I am lying in bed. I did too much today. (Now there is a surprise!). I need to water my garden. I need to clean the house as I have two friends coming over tomorrow. And I have to pack because we are going on vacation (but burglars beware we have a house sitter). We leave Saturday and I haven't started packing, or even thought about it.

I need a nap. I promise to blog tomorrow morning.

Tuesday, July 26, 2016

Would You Inhale?

We know Bill Clinton did not inhale but Barak Obama did inhale (because that was the whole point). I might have inhaled in the past but would never consider it now. All my past experiences involved smoking and occasional batches of brownies.

One friend told me that she asked her doctor about it and he told her it wasn't appropriate for her. She thinks she could go off all her other medications if she could go to pot. Another blogger recently revealed her problems trying to determine how much marijuana was contained in cookies she purchased.

Medical marijuana has been looming outside of my wheelhouse recently. I have heard it could help my pain levels and other issues but I have never really followed up with it. But its appeal is slowly growing.

I have thought about marijuana and its benefits but the whole idea of smoking at this point had zero appeal. Then I learned you can cook with it, brew it, and bake it. That has more potential. I could see drinking pot tea for its benefits. I could see making some cookies with it or maybe a bowl of soup....

I also found that these are the benefits of medical marijuana:
  1. Weed can be used to treat Glaucoma. 
  2. It may help reverse the carcinogenic effects of tobacco and improve lung health. 
  3. It can help control epileptic seizures. 
  4. It also decreases the symptoms of a severe seizure disorder known as Dravet's Syndrome. 
  5. A chemical found in marijuana stops cancer cells from spreading in the lab. 
  6. It may decrease anxiety. 
  7. THC may slow the progression of Alzheimer's disease. 
  8. The drug eases the pain of multiple sclerosis.
  9. Other types of muscle spasms could be helped too. 
  10. It lessens side effects from treating hepatitis C and increases treatment effectiveness. 
  11. Marijuana treats inflammatory bowel diseases, including Crohn's disease. 
  12. It relieves arthritis discomfort.

 
  13. It keeps you skinny and helps your metabolism. 
  14. While not really a health benefit, marijuana spurs creativity in the brain. 
  15. Pot soothes tremors for people with Parkinson's disease. 
  16. Marijuana helps veterans suffering from PTSD. 
  17. Marijuana protects the brain after a stroke. 
  18. It might protect the brain from concussions and trauma. 
  19. It can help eliminate nightmares. 
  20. Weed reduces some of the awful pain and nausea from chemo, and stimulates appetite. 
  21. Marijuana can help people trying to cut back on drinking.

I particularly like #5, 9, 12, and 13.  I also like the idea of 14 and 19. All the others sound good too but are not appropriate for me. 

Maybe its time for a cup of tea or a batch of brownies....

Monday, July 25, 2016

Heeding Advice and Enjoying Life

With any ailment, you get advice. Some of it is nice, sane, logical, and seems plausible - like rest, hydrate, elevate, ice it, if pain starts - stop what I am doing, etc. This is possible. You can do it. And some of it, not so much - keep elevated for at least 30 minutes out of each hour or at least 5 portions of fruits or vegetables with every meal. Really? I can try for that. And finally, some of it is just plain impossible - lose 30 pounds or non-weight bearing at all times for six weeks or anything that is just too restrictive to handle.

My point is I get a lot of advice from my doctors, and a lot of other people. I selectively heed it. I mean if I listened to everyone I wouldn't have a life, I would be really boring. And there is a point where I just can't do any more.

I have made the following life changes in recent years:

  • I gave up smoking. I never was a heavy smoker (5 cigarettes a day) but I did smoke for a long time. 
  • I exercise three times a week. I get 60 minutes of cardio and then 30 minutes of weights and resistance training, followed by stretching.
  • I try to eat healthy. Fruit and vegetables are a big part of my diet. I also skip packaged food as much as possible. I avoid desserts and a lot of sugar as much as possible. I skip salt as much as possible.
  • I pace myself and get rest and make sure I do not over do things. 
  • I take my medications as directed, go to my doctor appointments, and listen to my doctors.

But there are other things I am not going to give up:

  • Wine. I like drinking wine. I enjoy a glass of wine with dinner. I do not go bar hopping (in fact I can't remember the last time I went to a bar). But I like a glass of wine.
  • Red meat and bacon. I don't eat bacon cheese burgers all the time. But a nice steak on the grill or bacon for breakfast sometimes is nice.
  • Gardening. I have been told not to sweep, vacuum, rake, mop, lift weights, bend down, or carry things. But I love my garden. I want to grow my garden (more healthy veggies). I can get myself in a lot of pain by gardening. So I leave all the heavy lifting to my husband but I get out in my garden every day I can.
  • Bad TV and romance novels. Why not? Its my brain (or what's left of it) to rot.
What it comes down to is I need to be able to enjoy my life. I want to enjoy my food and drink. I want to do things I like to do. I can't be boring.

Sunday, July 24, 2016

Managing All That Bad News

Recently the news has been dominated by all sorts of horrible headlines on all these tragedies (and politics). It can be very hard to take for everyone. I admit there have been so many events that every day on the news you hear about another one and you begin to wonder 'that really can't be another one, it must be the same one I already heard about'. Sometimes the media becomes a blur of blood, bias, guns, and gore. 

I recently found an article that discusses how to cope with all this bad news. The gist of it was 'turn off the news' which I find to be sound advice, especially if you want to preserve your sanity. 

"This constant churn of harrowing news is physically and psychologically unhealthy, and you don't need to be directly involved in a tragedy to feel its effects. To the concerned viewer, this pain can feel unavoidable or even necessary. It might be a little bit of both. The truth is, in an age of unfettered access to the worst of humanity, we have to act as our own gatekeepers if we want to stay sane."

It made me think that as a patient, I get a lot of bad news directed at me. And I often get the question 'how do you cope?'. 

Over the past nine years, I have learned to cope in my own way. When diagnosed with breast cancer, I quickly learned that I could not digest all the implications right away. It took time - time for the latest to sink into my brain. 

I started trying to learn all about my cancer and treatment options. I immediately went into information overload and my brain fizzled out. So I basically turned off my brain for anything past the stage of treatment I was in. I couldn't handle any more. While I was coping with surgery, I learned about surgery, post surgery, potential issues including lymphedema. Once I was through surgery, I learned about chemotherapy. I took it in stages so my brain could cope.

A big part of the trauma of cancer is coping emotionally. And that coping extends to outside issues as well. I can't live in the world of  'all bad health all the time' or 'all cancer all the time'. No one should live in the 'all bad news, all the time' mode. We can't keep our sanity and deal with all the doom and gloom. So turn off the news, go outside and smell the roses for a while.

Saturday, July 23, 2016

Not A Good Idea

Yesterday, I decided I really wasn't feeling well and stayed home with Boots who is not feeling well either. I really wasn't feeling well. Everything ached and I was tired. Not a good day. My husband went off to work around 7 and left us both home (with the other healthy cat) for the day until 5 pm.

So I took care of myself by not exerting myself. I allowed myself to be lazy and have my body aches and pains and fatigue dictate what I did.

The sum total of what I did yesterday consists of watching 3 LMN movies, 2 episodes of Law & Order, and one episode of Property Brothers. I also set up my loom and started weaving with some beautiful chenille yarn. I also went outside to get the mail from the end of the driveway and supervise Boots when he went out for about 30 minutes. Not a lot of exertion.

Boots hung out with me. He went from room to room with me. He did insist on going out briefly (he hates litter boxes and prefers the great outdoors) but came right back in.

By the end of the day I felt a little better. I definitely had not exerted myself. But, and then comes the big 'but'.

On the downside, by staying home and not doing much, I felt totally isolated by the end of the day. I am not up to doing that regularly. I felt cut off from the world. I didn't talk on the phone to friends but had several email and text conversations. I also took care of some things I needed to do on the phone and online.

However, I could not live like that every day. I mean I physically could but would need to get more exercise. But mentally and emotionally, it would be horrible for me. I could see myself getting very depressed quite easily. And if I got deeply depressed that would have all sorts of bad ramifications that I won't even go into here. I am already being treated for 'post cancer' depression - which really should be 'my body fell apart before I was ready' depression.

I am going to call yesterday a learning experience. And one not to be repeated unless I am completely incapacitated and not expected to survive. This also reinforces to me the importance of one's emotional/mental state as compared to your physical state. They are both equally important.

Today, I am going to make sure I do get out and do things. It help that my husband is home. I think I might even go to the gym because I didn't yesterday.

Friday, July 22, 2016

Redundant

Today is a copy of many previous days. I am tired. I am in pain. And, damn it, I have a dentist appointment this morning. I hate the dentist. This is actually the periodontist who is aggravated with me because the insurance company screwed up and they still haven't been paid for my last appointment in January. (Don't blame me, blame the insurance company.)

I should go to the gym. But I don't think it will happen. I could go back to sleep right now... but then I would sleep through the dentist. This is my life.

I didn't even do that much yesterday. I took the cat to the vet, went to my knitting group, and then picked the cat up from the vet.

My life is redundant, either that or I am stuck in a vicious 'Groundhog Day' rerun.

Thursday, July 21, 2016

What Do You Do When You Don't Feel Well?

I guess on the short term when I don't feel well I stay in bed or on the couch. I sit around doing a lot of nothing. And eat and drink what I want. Or what I feel will make me feel better...

If I don't feel better I call my doctor eventually... If I think its that important. I hate calling the doctor. I will not go to the ER unless I am (literally) dripping blood.

I often pretend I am feeling well when I may not be. Because if I didn't do that I would spend entirely too much time sitting around.

But today I am not feeling that bad. Even though I painted part of the living room yesterday. I mean I am tired and soon I will get my act together and take a shower and get dressed. I have nothing on my calendar until 1 pm today. So I can be lazy for a bit.

However, one cat is not feeling well. I am not sure what to do because he can't tell me what is wrong. He clearly is not feeling well because he isn't walking much, he's moping, he's not eating, he's not drinking much, and he's just sitting.

He went out Tuesday night (to my displeasure). He did not appear until yesterday late afternoon. He came out and walked around a little bit and went back to sleep near the foundation of the house. I went inside and made him a quiet little space with his food dish, water bowl, litter box, and favorite pillows. Under protest, I brought him in and put him in there. He immediately jumped up on the table so I put his pillows there. He stayed there for a few hours and used his litter box. Then he came back out to the living room and slept on the sofa for a while.

This morning he was sleeping downstairs on the futon. I brought him some water which he didn't appreciate. He did come upstairs to eat a little and then has been sleeping again. He doesn't want attention. He protests when I pat him. He insisted on going back out - I hoped he was going to be a bit more energetic but he's not. He sitting back by the foundation again.

Damn. I think he needs to go to the vet. But at least its not me going to the doctor. He clearly is not feeling well.

Wednesday, July 20, 2016

A Hangover

We all have had a hangover or few in our lives. Admit it, unless you are a lifetime non-drinker you have had a hangover. Alcoholic hangovers happen. We all know the feelings - dehydrated, headache, general crappy feeling.

But with RA and fibromyalgia there are other hangovers - activity hangovers. This happens when I, or anyone with these diseases, attempts to be a normal person. You act normal for one day and then spend three days paying the piper, so to speak.

Someone else wrote about activity hangovers the other day which made me feel like I am not alone. She writes about going to a party and then feeling the pain. I, on the other hand, don't even have to go to a party, I can just have a good day, try to be normal, and then spend a day in bed. If I'm lucky, its not multiple days in bed.

I am not sure what I have done for the past few days but yesterday I took a 2.5 hour nap and then slept for 8 hours last night. My pain management doctor says that sleep is good and very beneficial. It allows my body to heal. But I will still discuss it with my primary care when I see her.

Anytime I try to be normal I end up taking naps and then have bad days with 'activity' hangovers.

Tuesday, July 19, 2016

The Best Laid Plans

The best laid plans sometimes never take place. I have had a plan to take the best care of me as possible. This includes regular trips to the beach because that is the best place for any kind of healing. I mean the sun, the sea, the waves, (the hot life guards), and fresh air. What else does one need? I mean besides being able to go to the beach with out the preceding bathing suit shopping? (Bathing suit shopping is the only bad thing about going to the beach.

Back to my plan, I was going to go to the beach today. I even tried to talk a friend into going with me. I have a doctor appointment at 8:15 AM (What was I thinking when I made that appointment?) this morning and then I planned to go to the beach. Today will be a perfect beach day because the humidity is gone and there will be a nice breeze.

The problem is I am exhausted. If I didn't have a doctor appointment this morning I would have stayed in bed. I will have to be happy with a nap later today. Or I could suck it up and paint another wall in the living room (but that's not going to happen).

I didn't think I stayed up that late last night. And while I did wake up this morning at 4 and let one cat out and one cat in (my other job), I did go back to bed. Normally I would deal with my not that great night of sleep and go to the beach and then come home and take a nap. But today I think I'll just take a nap.

Monday, July 18, 2016

Pokemon Go For Those Who Don't Walk

The newest craze is Pokemon Go. In case you have been living under a rock this is where you get your butt off the couch and go out into the world and use your phone to find little virtual monsters. In addition to the expected items, people have found dead bodies (here, here, and here, gotten robbed (here, here, and here), and crashed into a pole (another reason not to use your phone while driving).

Now people like me, who aren't very good at walking around these days, are never going to to play Pokemon Go. Yes, sigh, another fad will pass me by.

I really like the idea of getting people up and outside. Too many people spend their lives sitting on the couch by choice. I would be happy getting up and outside instead of sitting on the couch but I sit on the couch because I am resting to recover from getting breakfast.

I mean I can walk but I don't go for walks outside anymore. A big walk for me is from the parking garage at the hospital to my doctor's office. Don't laugh. Sometimes that is a good ten minute hike and includes waiting for the elevator. If I could find some little monsters on the way, I might bring them to my doctor to be examined as well.

Sunday, July 17, 2016

Post Breast Cancer, Happiness Is A Clear Mammogram

I had my mammogram last week. I don't talk about these ahead of time because I don't feel the need to. If I feel the need to, you can bet my blog will be covered in mammogram information.

But even if I don't talk about it, doesn't mean I am not thinking about it. You can bet I was thinking about it. I was convinced that I had a recurrence and I timed my mammogram (for two days before my annual oncologist appointment). I was sure I had a something.

I had already started putting together a plan in my head on how I was going to handle it, tell people, deal with treatment, talk to my oncologist on Friday about it. I was positive.

I can convince myself I am going to die next week if I really try. Anyone who has gone through a cancer diagnosis can easily convince themselves its back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am so happy that it was clean, nothing exciting to talk about. I talked with my oncologist about it just to be sure. But in the meantime, I am happy.

Saturday, July 16, 2016

Doctor Abuse

I have been saving this post for when I got around to it. But then an article about a local doctor popped up on my radar. And I am now really appalled.

What I am talking about is not abuse of doctors by patients but sexual abuse by doctors on patients. Its under reported and under penalized.

A recent study came out showing that sexual abuse of patients by doctors is wide spread. I had no idea.I find it appalling.You trust your doctor and then they violate the trust. Who are you supposed to report it to? The nurse who works for them? The hospital where they work? The medical board? You don't really know. And you are ashamed.

You trust your doctors because you hire them to make you feel better. And it is expected that they will touch you. And you are willing to take your clothes off for them. If you think about it, when would you meet a strange person and go into a small room with them and then take off your clothes? In any other context that would just be really weird and asking for trouble.

So you can see this could easily lead to impropriety. But we trust our doctors and assume they will do the right thing and not be inappropriate. Most doctors I am sure are professional and not going to do anything inappropriate. But unfortunately there are always those rotten apples.

So as a patient, what can you do? If you feel something is inappropriate, speak up, question it, and report it. Who should you report it to? Start with the hospital where you are a patient, the medical board, and the police if you really feel violated. Do not hold back.

And find a new doctor. There is no reason to stay with a doctor who is inappropriate or makes you feel uncomfortable.

Friday, July 15, 2016

Most Embarrassing Cancer Moments

I think everyone has embarrassing moments in their life. I mean who didn't awkwardly walk into a wall at one point, trip as they entered a room or a building, or realized you got home and you had a toothpaste stain on your shirt since morning - after having a big meeting at work.

My famous embarrassing moments in life include also coming back to the hotel at the end a day at a very busy and important conference and realizing I had been wearing one blue shoe and one black shoe all day long.

But my mortifying cancer moments include:
  • Needing a quick appointment with  my cancer surgeon and realizing after he didn't come back for 1.5 hours in the exam room that maybe I was really done with that appointment. (Yes I waited for that long before going to ask the nurses if he was coming back.) And then I had to wait longer for him to come back and tell me that everything was okay. So much for a quick appointment.
  • While riding home from chemo with my husband driving, we stopped at a light. When my husband pulled away from the light my wig went flying in to the back seat! Leaving me bald in the front seat.
  • After waking up in post op after my thyroid cancer surgery, I was not upset not because I had cancer but because I was wearing a clean gown and the doctors and nurses therefore had seen me naked. (Talk about twisted priorities!)
Those are all I can remember at this point. But I am sure there are more. I hope other cancer people can relate.....

Thursday, July 14, 2016

That Biceps Tendon

Sunday morning I woke up with a sore left shoulder. I have no idea what happened. I sucked it up for a few days but yesterday when I tried to pick up something up with my left hand and it just gave way. I am not going to the doctor for this. But I did ask one of the physical therapists at the gym. After pushing on a sore place on my shoulder he diagnosed it as a strained biceps tendon. (He said it was very strained based on how sore it was.)

I do not need any other ailments. But this should go away in a week or so, or so he thinks. However knowing my body it will last for a while. I will try to keep my cynical side in check while it heals. And I have some new exercises at the gym to help heal.

Wednesday, July 13, 2016

Today its all about me

I have made a decision (don't laugh - I am capable of deciding things by myself). Today its all about me. I am going to the beach. Its supposed to be hot, near 90 so it will be a perfect beach day. My tan is starting to fade. Actually, I barely tan at all. If I got any color earlier this year, it has faded. A friend once said to me that by the end of the summer, I might look like a french fry.

By averaging a doctor appointment a week, I have no time to get a sunburn and have it fade before I get to a doctor. I would get a lecture if I showed up at an appointment with a sunburn.

But anyway, today its going to be hot so it will be a perfect beach day. I will go the gym first so I can be virtuous. Then I will plant my chair in the sand and sit with my feet in the ocean. After I will go out for clams because that's what we do in New England after the beach - eat seafood, fried seafood that is.

I haven't been to the beach for over a month. Either I haven't had time, or the weather hasn't cooperated, or something else.

I need some time for me. Yesterday I spent all day with friends - one came over for coffee and I met two for lunch and then they came back over here. I had fun but I got really tired. That means when I go to the beach I will just sit. But I will be happy. And that's important.

Tuesday, July 12, 2016

I'm Aggravated

I have decided I am very aggravated with my health. It drives me crazy. I would be lying if I didn't say that.

I would be much happier if I didn't have so many issues. I would be happier if I wasn't in pain. I would be happier if I was able to sleep better. I would be happier if I could do everything that I used to be able to do. I would be happier if I had never had cancer, twice. Or RA or fibromyalgia.

Did you know having any one of these cancer, rheumatoid arthritis and fibromyalgia, can cause depression along with everything else? Many people who have a single one of these diseases get diagnosed with depression. So yes, I can say also that I am treated for depression on top of everything else.

So what do I do? How do I cope? People say to me 'I don't know how you do it'. I think 'do what?'. I don't do anything special. I get up every morning and deal with my life. I can't do anything else. There is nothing else. What do you think I should do? This is also aggravating.

Basically I put one foot in front of the other each day. I may be aggravated but I am still here despite my health. Life could be easier but it isn't. I have to cope with the hand I have been dealt in life.

Monday, July 11, 2016

Walking During Chemotherapy

So back when I was in chemo, and for many years before diagnosis, I used to go for a daily walk. That was when I was healthier (I only had two cancers, not RA and fibro). When I was healthy, I would walk between 4-6 miles each day. Many friends didn't like walking with me because they claimed I walked too far and too fast. My husband would call my walks 'death marches'.

But I digress. During treatment, I walked every day I could. I mean on days I had surgery I didn't always feel up to walking. During chemo, often my walks were shorter because I felt like crap (a technical term). My biggest side effect during chemo was constant nausea and inability to be in the same room as scallions. I did have some neuropathy but not too bad and my finger nails and toe nails took a beating.

Now there is a new study (because we always need more research) that shows that breast cancer patients who go for daily walks during chemo had fewer neuropathy problems than those who did not walk.

"The study, involving more than 300 cancer patients, was presented at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago.

Investigators in the exercise study directly compared the neuropathic symptoms in non-exercisers to the pain among patients who took part in a specialized six-week walking routine with gentle, resistance-band training at home.

The exercisers reported significantly fewer symptoms of neuropathy – which includes shooting or burning pain, tingling, numbness, and sensitivity to cold – and the effects of exercise seemed to be most beneficial for older patients, said lead author Ian Kleckner, Ph.D., a biophysicist and research assistant professor in Wilmot's Cancer Control and Survivorship program."

So maybe I was on to something. The nurses and doctors all appreciated the fact I went for walks and encouraged me to keep walking. Currently oncologists and patients spend more time talking about walking during chemotherapy. A daily walk also provides the benefit of reducing the constipation that often accompanies chemo. 

"Kleckner, a longtime drug-free body builder and former college rugby player, said he's committed to understanding more deeply the benefits of exercise for cancer patients. "Exercise is like a sledgehammer because it affects so many biological and psycho-social pathways at the same time – brain circuitry, inflammation, our social interactions – whereas drugs usually have a specific target," he said. "Our next study is being designed to find out how exercise works, how the body reacts to exercise during cancer treatment, and how exercise affects the brain.""


So my advice is during chemo, go for a walk. In addition to helping with neuropathy, it can help reduce your stress. Actually I think my advice is as soon as you are diagnosed with breast cancer start going for a daily walk.

Sunday, July 10, 2016

Its Official

Today is going to be a bad day. Everything hurts. I didn't do that much yesterday. But for some reason I have a lot of pain today. My left arm and left side are very sore for some reason plus the rest of my back. (Okay, I did do some gardening and had a friend over for dinner.)

So these are my plans for today (after eating a delicious breakfast my husband made for me and delivered to me so I could eat in bed) are:
  • Take a pain pill and wait for it to work
  • Match the socks from last week's laundry
  • Take a hot shower to help the pain levels
  • Eventually meet a friend for coffee.
In the meantime, I think its time for some more bad tv.

Saturday, July 9, 2016

Awesome Breast Cancer Blogs

I found the list of Healthline's best breast cancer blogs for 2016. I'm not on it (but I'm not perfect so I didn't expect to be). But the list is full of other women's breast cancer blogs that are current. If you have breast cancer, I strongly suggest you read follow these blogs. At least some of them.

My current favorites are on the list. You need to go read the list to find your favorites.

Friday, July 8, 2016

The Props In My Life

How do I handle my life with its medical disasters? I have all sorts of little props to help me out.

  • I have a high chair in my kitchen. I can sit when I cook so I don't get as tired. Its new. My husband bought it for me when we moved.
  • I have a folding shopping cart for when I go to farmer's markets or any place where I need to carry anything. That way I can actually go places and do some shopping by myself.


  • I have cushions all over the house so I can get comfy when I sit down and can put my feet up.
  • I have a power bed so I can raise the head and feet and get comfy when I lie down.
  • We moved to a raised ranch so I don't have to deal with stairs. It makes my life so much easier. The bedroom isn't upstairs, its just down the hall.
  • I have Butrans pain patches that allow me to function as a human being and not be in pain. These are the only things that allow me to get through my daily life without collapsing or being in so horrible pain. 

Actually the single most important thing that helps me cope are my marvelous, wonderful Butrans pain patches. If you are in chronic pain, try them. Without them I would not be able to function.

Thursday, July 7, 2016

Changing Stressors

As life goes on, my stressors have changed. Or maybe just the list gets rearranged. When I first started blogging, breast cancer was my primary concern. But then my health started to fall apart and things have changed.

At my breast cancer diagnosis, I quickly prepared myself to cope with breast cancer and I came up with a plan - support groups, etc. And I dealt with it. 

Then I got gall stones and had my gall bladder out. Then I found out I should be seeing an endocrinologist about my thyroid cancer which made it harder for me to ignore it. When I went to one she sent me for an ultrasound which found some thing on the thyroid bed which we had to follow and it stressed me out for a while. Then my back started hurting. then I was diagnosed with fibromyalgia and rheumatoid... Somewhere in there I got a root canal too....

Where am I going with this? I had lunch with two breast cancer friends this week. One of them has  multiple other current health issues. We were talking about them and she said that breast cancer was the last thing on her mind these days. She needs to get the rest of them fixed so she can back to worrying about breast cancer.

For me, my stressors now revolve between what is my current worst (usually health) problem. It can change daily. I sort of hang on during my roller coaster ride. 

So how do I cope? I have created my own little support world. I burn off stress by going to the gym three times each week. I have a therapist I see monthly. I have a meds therapist (with the good drugs) to keep me sane. I have a weekly knitting group at a local cancer center. We all are coping with cancer. I also get together with my other 'unhealthy' friends and we hang out and talk bitch about our health concerns.

Since I can't be healthy, I just try to keep my sanity. If at all possible.

Wednesday, July 6, 2016

But I Can't Sleep

I'm exhausted. We went away for the weekend and I needed more sleep. I always need more sleep. The only time I get enough sleep is when I can take a sleeping pill and it actually decides to work.

But I haven't been able to sleep. My back is killing me. This has been two nights now. Crankiness may be showing up soon.

My husband informed me this morning I need to stop going to bed so early so I don't wake up so early. I go to bed early because I am exhausted. Then my back hurts and I wake up. Even if I take my pain pills. This is very aggravating.

I'll have to wait for my next pain management doctor appointment to talk about this. But I'm might need to make that appointment sooner instead of later.

Tuesday, July 5, 2016

What the Patient's Think

I always applaud research that consider the patient's side of a cancer diagnosis. Honestly how many more research studies do we need on mice that look for new cool drugs (but finding a cancer cure would be a nice thing)? I mean all that research is nice, but I think all us patients would appreciate a bit more information on the impact of cancer diagnosis and treatment.

Face it, when we are diagnosed with cancer, we wonder are we normal in our reactions, treatment plans, dealing with doctors and more. Its normal to wonder "am I the only one freaking out at my doctor?" or "why am I running to the library and surfing the internet to find out what the doctor suggests is all about?".

CancerCare put together a Patient Access and Engagement Report for 2016. I found it very interesting. And it was very nice to know that I wasn't the only one with some reactions and issues.

Just knowing that you are not alone in your thought process can be very comforting.

Monday, July 4, 2016

I took a little holiday

Its a holiday and I took a little holiday. We went up to a friend's cabin in the mountains where there is no wifi, no cell phone service. We were off line. Okay, we had a satellite dish for TV but I was happy to relax and read a book (you know those things with paper pages and cardboard covers?)

Anyway, I didn't blog. I didn't read my email, look at Facebook or anything. It was very nice. I also pretended I was a healthy person and helped my friends paint the trim on their house. Back to reality tomorrow, after about 10 hours of sleep.

Saturday, July 2, 2016

Genetic Testing

So if you have a family history of breast or ovarian cancer, there is a strong chance you have one of the two BRCA genes. And now if you have BRCA1, there is a significantly increased risk of uterine cancer - 22 times higher in a recent small study.

I read that and said 'wow!'. I am somewhat surprised this was never figured out before.

Earlier this week I was talking with a friend and she was tested for BRCA back in the early 2000's when the testing was just starting. She told me that the testing is now done differently as technology has changed. And the test now includes several other genes including ones for colon cancer. When I see my oncologist next month, I will ask about testing.

With my medical history I was previously tested for another gene and was told I didn't have it but probably another gene that hadn't yet been discovered. so maybe its time for another test.

Since I had gone through genetic testing once, I have gone through the thought process before, I have some experience. If you get tested for genes and find out you don't have it, you get to take a deep sigh of relief.

But if you do have the gene, I think its a bit challenging. First of all, where did you get the gene? You don't get to blame anyone so forget about that route. And you could have been the first with the mutation. And someone could have had the gene and not had any cancers. (Just because you have a gene it doesn't mean you will get cancer, it might just increase you cancer risk.)

Then once you get past that part, how do you tell people? Who do you tell? I thought about who I would tell and who needed to know and who would panic/overreact. My siblings obviously needed to know. One is married with children and they would need to be screened. And then and etc.

I think knowing that certain family members would overreact, well let me say I would expect and overreaction based on their previous reactions to other issues, did not fill me with warm fuzzies. Because of that, this is something I have rarely talked about it and never told family members (because it was negative). If I had the gene, it would have been another story.

Now that I am going to ask about testing, I might have to cope with that.... But I'll wait until then, and take a deep breath.

Friday, July 1, 2016

Managing Emotions

This week I read two different blog posts from other women dealing with breast cancer - Nancy wrote about cancer patients being told to be positive and Florence wrote about the crappy and the happy we deal with in our lives. After reading them, I commented on both. And then started thinking (sorry!).

First of all we have the issue of cancer patients being told to be positive. Honestly, whoever came up with this was an idiot. There is something to be said for not succumbing to depression while dealing with a medical disaster. If you are depressed, you aren't going to take your meds, go to the doctor, get emotional support. But if you are trying to stay positive you will probably handle it better. However, don't tell me to be positive and smile.... Grrr....

Then we have the issue of coping with the crappy and the happy. Everyone gets a load of crappy in their life and a load of happy. But its how we handle it all. We have to learn to balance the bad with the good and look at the goals for the long haul and take enjoyment out of what we have.

Even without adding in a medical roller coaster along with everything else, it can be tough to maintain one's sanity and be able to smile once in a while. Its that medical crap that can screw everything up. All of a sudden you can't work, you have problems getting around and paying your bills. And you are supposed to smile? Don't tell me to be positive on top of all that. I will work on being able to keep a smile on without your help.

I think I just don't like being told what to do.