Friday, September 30, 2016

The Snoring Controversy

Do you snore? No of course not. You have never heard yourself snore. So of course you don't. Sometimes its possible your spouse/partner/significant other will infer that you might snore a tiny bit. But that doesn't mean its really true. Does it?

Last night I had the oh-so enjoyable sleep lab test. I had a sleep test about two years ago so it wasn't all that unfamiliar but I don't remember squat these days.... But because of my blood oxygen levels and my feelings of fatigue it was time for another one.

I got there at 830 last night and was escorted to my 'comfy', 'little' (hospital) bed. They gave me time to change into my PJs and hit the bathroom before they put about 800 leads on my head and face. No not 800, maybe 22 or something. But it took about 40 minutes to get me all connected and then of course I had to pee again so I took the whole concoction with me to the bathroom and then got back in bed.

Then I took my sleeping pill so I could pretend I would actually get some sleep. Then she said 'don't stay up late on your phone and she closed the door and shut off the light. Like I was 8 years old. I should have brought a flashlight so I could read under the blankets in bed.

I finally fell asleep and I must have slept for five hours or so. When I woke up I lay there sort of awake but not really for a couple of hours. Half in and half out of it.

At 530 in the morning, the technician was all perky and said it was time to wake up. That was way too early to be perky. I asked her if I snored. She said she COULDN'T TELL ME! What? She said I could ask my doctor after the report was ready. Which is in two or three weeks. She said the sleep lab generates about 900 pages of crap to be read and then it was summarized in a report for my doctor.

After another 20 minutes of her taking off my million little cables, I was allowed to get out of bed finally and got changed back into my clothes. Unfortunately the cafeteria wasn't open yet so I struggled to the gym without coffee.

And I still don't know if I snore or not. I will definitely need a nap later today.

Thursday, September 29, 2016

On Not Blogging About Breast Cancer

So yes my blog is called Caroline's Breast Cancer Blog but I haven't been writing about breast cancer as much. Why? Because of several reasons:
  • My health is not focused on breast cancer
  • I try not to live in the 'all cancer all the time channel'
Honestly, my health sucks but its not all about cancer. I have plenty of other chronic ailments to cope with. And I also try not to focus on my health all the time. I have other things going in my life - weaving, knitting, travel, gardening, reading.... I can't remember anything else. Oh, cooking. I like to cook.

I wish I could cut all the focus in my life off my health. There was a time in my life when I just had one little niggling constant glimmer in my mind of thyroid cancer and nothing else. Those were the days.

Wednesday, September 28, 2016

Stress is Bad for My Waistline

This isn't a good week. (I swear I do have good weeks, just not right now.) The reasons why it isn't a good week is that I had an MRI Monday night so I was up way too late - meaning after midnight. Today I have a deep cleaning at the periodontist. This means they will inject Novocaine and then scrape way under my gums. I expect I will have soup or scrambled eggs for dinner. Then tomorrow night I have the sleep lab so I don't expect to get a good night's sleep again. I know I whined blogged about this earlier this week but I want to whine some more.

Yesterday I needed a two hour nap to recover from Monday night. I also needed too many snacks. Today I think I will probably be grumpy. I plan on eating lunch before my appointment which probably means some kind of fast food which is bad. But I think if I have some food in my stomach I will probably handle the teeth scraping better. (My dentist has told me this several times - eat a good meal before dental work. Having food in your system makes a big difference.) Also I probably won't be able to eat for a few hours after between sore gums and numbness.

When I am stressed I find myself stress eating. I know I am doing it and have tried to turn myself towards fruit instead of fattening food. But its just too many categories. When I am extremely stressed (think cancer diagnosis level of stress) I stop eating and actually lose weight. I need to lose weight but I am happy I am not that stressed and am at the whining stage.

I just need to watch what I eat and get through this week. Then I'll stop whining.

Tuesday, September 27, 2016

When To Get a Flu Shot?

This is part of the big conspiracy to confuse patients. When am I supposed to get a flu shot? In previous years I would go to my primary care physician and get a flu shot. I saw her a couple of weeks ago and was told it was too early. I should wait until the hospital has its clinic in October or go to an other flu shot clinic I find. Hmmmm...

So I did some research. The latest wisdom is to get a flu shot between Halloween and Thanksgiving. But there is other evidence that it may be different for over 65 or the medically frail. Am I medically frail?

I don't know. I do know I am confused.

Monday, September 26, 2016

The Political Season

We are far into the political season. I am just happy it will end in six or seven weeks. I don't know how soon it is and I don't really care. I just know the following:
  • When voting for a candidate you are not voting for the best, you are voting for the least worst. This is especially true this year. No one is running around saying which candidate is better. They are only saying which candidate would be the least bad.
  • We all have the opportunity to weigh in on election day by voting. I am not interested in discussing anything political and especially will not have any conversation with someone who doesn't vote.
That's it. You have time to educate yourself on the process and the issues now with enough weeks left to learn about them. So go forth and educate yourself and then make your choices (silently) and you have done your part.

I am so frustrated with the entire process this year, I am not interested in discussing it. I am not happy with how the campaigns have progressed so far that I just am going to ignore the whole thing and vote on election day.

I had thought I would watch the debate tonight and then thought not and then wasn't sure. Its supposed to be HHHUUUUGGGGEEE! But then the decision was taken away from me when I was scheduled for an MRI tonight at 930 PM. I will not be able to watch it. I need to leave here at 9 PM and then will be done around 1045 PM.  I still may DVR it so I can watch it another time. Decision made

I was thinking it was unusual that I could get an MRI on such short notice but I think I figured it out.

Politics over for me. Just go vote.

Sunday, September 25, 2016

Why Can't I Sleep?

So I am always in pursuit of the land of nod. The only way I seem to be able to sleep is to take a sleeping pill but that doesn't guarantee a full night's sleep. If I get so exhausted I can't watch tv I usually get a couple of hours of sleep. Sometimes I can even sleep all night. But I'll tell you my secret for sanity in the middle of the night. I pull out my tablet and play computer games until I can fall back to sleep.

I am always looking for help with sleep. WebMD can always provide assistance with all things medical. They sent me an email the other day on the Causes of Fatigue and Seepiness and How to Fight Them. It wasn't that helpful. It included things like hidden UTIs, dehydration, heart disease and apnea. None of those are me. And the one that is me didnt help.

"Fatigue Cause No. 14: CFS and Fibromyalgia
If your fatigue lasts more than six months and is so severe that you can't manage your daily activities, chronic fatigue syndrome or fibromyalgia are a possibility. Both can have various symptoms, but persistent, unexplained exhaustion is a main one.
Fix: While there's no quick fix for CFS or fibromyalgia, patients often benefit from changing their daily schedule, learning better sleep habits, and starting a gentle exercise program."


I have done all that. We even got a new power bed with a good mattress where I can raise and lower the head and the feet. I do exercise. I do everything else. I am just very complicated.

I might need to start counting sheep or something.

Saturday, September 24, 2016

Not A Good Week Ahead

This coming week is going to be long, stressful, and sleep deprived. I don't know what I was thinking but I think the real answer is I wasn't thinking. This is my week:
  • Saturday (today) - craft show where I will have a table all day
  • Sunday: Lunch and dinner reservations with two different groups of people. Lunch at noon and an early dinner at 4 PM. 
  • Monday: 930 PM MRI for my neck. I should be home by 11. I never stay up that late.
  • Tuesday: Deep cleaning at the periodontist with novacaine. How fun! 
  • Wednesday: The only good day because there is nothing on my calendar
  • Thursday: Lunch plans with a friend. Sleep lab overnight to see if there is anything else wrong with me. This means another night of not enough sleep.
  • Friday: Leave the sleep lab at 630 am and go directly to the gym.
What was I thinking? I don't know. I need to allow enough time for plenty of sleep each week. Monday morning I hope to sleep late. I also hope I can sleep in on Wednesday and Thursday since I will be up too late and do not expect enough sleep at the sleep lab.

My goals then for the week: focus on getting enough sleep and rest and pretend nothing will hurt. This is just a lot of poor planning on my part.

Friday, September 23, 2016

How Long Do I Have?

When we are first diagnosed with cancer, one of the first questions we ask is 'how long do I have?' We assume/hope/pretend we will beat our cancer and live a long life. But for me, the little voice inside has always asked 'will I live a long time after the beating my body has taken, mostly due to cancer treatment?'

With two cancer diagnoses behind me, I have wondered how long I will live. My family mostly lives into their 80s, my parents are currently 86 and 88, my maternal grandmother lived to 96. I have always thought I will make it a while longer, being very indeterminate. I don't think I am dying anytime soon.

My body is not what we call 'in good shape'. I have aches and pains all the time, as well as arching pains across my back, twinging hips, throbbing knees. All of this wears on my body. It has gotten me concerned.

I am currently 35 years from a thyroid cancer diagnosis and 9 years from a breast cancer diagnosis. But today I read about a woman who is 50 years from her breast cancer diagnosis. She was diagnosed at age 29 in 1966. Now she is 79 and still here.

That is very encouraging. I really hope to make it 50 years after both cancer diagnoses. I have 15 and 41 years go to. I am not sure if that 41 years is doable for me but I wouldn't mind.

So I hope you are also encouraged by this as I am. With a breast cancer diagnosis, we deal with surgery, radiation, chemotherapy, and more. Our bodies are stressed and strained. But now we have a hero to look up to. If she can do it, so can we.

Thursday, September 22, 2016

More Needles????

I hate needles. I really hate needles. If a needle is near me I can't look. If a needle is near anyone else, I leave the room. (Actually sewing needles and knitting needles are fine. Its those icky medical ones that cause me problems.)

Now it looks like more needles are in my future. Ick. Double ick!

Yesterday I went to see neurosurgery because of increasing pain in my neck. Real pain in my neck, not the literal kind. I do have to deal with the literal pains in the neck (like insurance companies, hospital billing departments, and poor bedside manners). Back in 2014, I was having problems with my right arm. I was sent to see a neurologist to see if there was something going on back in my brain to cause this. (A subtle way to see if there was a 'thingy' in my brain.)  There wasn't anything in my brain (except my brain) but there were disc protrusions and bone spurs on my neck.

Jump ahead 2.5 years later and I have increasing pain in my neck, shoulder, and arm. My primary care referred me back to neurosurgery. The neurosurgery physician's assistant said the following:

  • Your body may reabsorb disc tissue but will not reabsorb bone so its not going away anytime soon, probably not ever.
  • Physical therapy may help so we are going to try that.
  • They want a new MRI of my neck (and brain) to get another picture of what's going on and see if there are any changes (read that as growth).
  • The next step is needles in my neck sort of like what I get in my spine.
I am overjoyed. I can't wait. But I guess I have to realize that I can force myself to deal with needles if it means the pain might go away lessen. That is my dream actually for a pain free, healthy body. So I guess I have to stick with needles (that is such a bad pun I have to leave it even though its not what I meant to say. What I meant is I have to cope with needles.).

Wednesday, September 21, 2016

Lymphedema and the lymph system

So as an extra gift with breast cancer, I have lymphedema in my left arm. I am very coordinated and fell on our icy front walk and landed on my hand. My arm swelled up and voila, I have lymphedema. I have a 'lovely', 'skin tone' sleeve that I get to wear sometimes. It even provides some sun protection so I get a tan line on my wrist.

So what is the lymph system? I had no idea until I fell that day. I sometimes try to find more information on the lymph system.

First of all what is lymph? That clear fluid that seeps out of blisters and cuts sometimes. Its the other system in your body like your blood system but it has white blood cells and cleans out the dirty cells.

The smart people at Dana Farber provided this nice picture and a more detailed description on their blog here.

So if you look at the picture in detail, you will see how it flows around your body. And its pretty much divided in four quadrants of the body: top right, top left, bottom right, bottom left. Lymph nodes are lymphatic coolers. But if some get taken out, a 'traffic jam' occurs and all that lymph fluid gets backed up in whatever part of your body is beyond the incisions.

In my case, they took a big scoop under my left arm that grabbed a whole bunch of nodes. So the little lymphs get stuck in my arm which swells and is permanently larger than my right, dominant hand.

A former co-worker of mine had a bad leg from something traumatic and walked with a lymph. He ended up in the hospital for six months with lymphedema in his leg. I have a friend who had lymphedema in her arm and also on her side and in her abdomen. With treatment, she is now a smaller size in her torso.

So this is a nice little education class for the day. Class dismissed.

Tuesday, September 20, 2016

In Shock

We moved to our new neighborhood last January. January in New England is not a time when people are outside much (unless they are playing in the snow somewhere). People are not outside in their yards and being social. All socializing is inside.

We met one family of neighbors a few weeks afterwards because we were outside dealing with snow and ice. We then met more neighbors as the weather got warmer. Because of the street's turns, we have one neighbor directly across the street and one next door. Everyone else is around a corner someplace. I met the neighbor across the street, B, in April or so. We talked gardening. She works at a local school and was very nice. I met her son and grandson. She was planning on working a few more years and then retiring to enjoy her gardens.

We discussed gardening issues over the spring and early summer. She was looking forward to a trip to her home country with some family members in the summer. Then we went away for a few weeks and she was away for a few weeks. I hadn't talked to her since July or so. I just figured she was busy and I was busy.

Last week I noticed lots of cars visiting her. Her family would come over from time to time, mostly on weekends. But there were never that many cars for that many days. It was very out of place. Friday it looked like a big garden party was going on. One of the other neighbors told me that the mailman, delivering a package, told her that there was lots of crying and hugging going on.

Saturday we went to the beach for the day. Sunday one of my other neighbors asked if I knew what was going on because on Saturday she saw a hearse and a procession leaving the house. (She couldn't stop because her child had a medical emergency she was dealing with.) No one knew what was going on.

I thought about stopping by on Sunday to make sure all was okay. All the neighbors were concerned. No one knew anything. I was asked by several people.

Yesterday after the gym, I saw people sitting in the garden. I went over to ask. It turned out that was two of her children. B had felt sick on Tuesday and went to the hospital. She died Wednesday morning in the hospital. She was gone. Everyone is stunned.

It turns out B developed a horribly aggressive, very rare form of lymphoma and that was it. Nothing could be done. Its just horrible. I can picture her in my mind but I will never see her again.

Monday, September 19, 2016

I took a day off

I took a day off from basically everything. Everyone is entitled to a break once in a while. Saturday we went to the beach for a few hours and out for clams. Yesterday I was lazy and did not accomplish much.

I actually pretended I was healthy but wasn't dumb enough to try to do anything I shouldn't. Yes I took it easy. I played with my loom - I have been weaving more. I got some awesome yarn last week that I had to try weaving.

Actually I needed a break from the 'sick' me. Friday night I remembered to check my cell phone for voice mails. Unfortunately I didn't get them to call back two doctor office's before the weekend. I wasn't going to worry about it all weekend so I took a few days off. I will call this morning and work it out and find out what's going on.

Back to reality on a rainy Monday morning. Maybe the drought will finally be over.

Saturday, September 17, 2016

I Am Entitled To Change My Mind

Most days I blog about what is on my mind and it just sort of  pours out of me. Sometimes its in reaction to something I saw, read, or heard. Sometimes its just what is on my mind. And sometimes I change my mind. Sometimes I read my blog again and think about what I actually wrote.

Yesterday, I blogged about changes I could make and a week ago I blogged about how I am done making lifestyle changes. And I realized I totally changed my mind. But then I realized I didn't. I am ready to make changes that other people tell me to do. And I am ready to make changes that I want to do. I don't want to be told what to do. I am an adult after all. (I realize some people may disagree with this - about being an adult that is.)

I like to make my own decisions about me. And I am kind of sick of doctors telling me what I am supposed to do and needing to know every detail about me. The worse your health is the less privacy and modesty you have. Doctors make all kinds of decisions for you - eat this, not that, let me stick this needle into you, you will only feel a pinch, etc.

So I am done with being told what to do, or have it suggested to me.... I am going to make my own decisions.

Friday, September 16, 2016

Changes I Can Make

My therapist asked me an interesting question the other day - do I eat specific items that could help with my fibromyalgia? I actually thought about it for a minute. (Me, taking other people's advice???? LOL) An email came through my inbox on foods that are beneficial for people with fibromyalgia - I got as far as seeing bananas on the list and I eat one every day.

However that did prompt me to wonder what other changes I could make to my life to help me in some ways. I had thought that once I left my pastry filled job I would lose a few pounds. I did lose a couple pounds but then they reappeared. This indicates to me that I need to rethink my eating habits because the flab is not going to vaporize as I expected.

I am going to think about making some changes to help me feel better - losing weight will help with other health issues. Here's my list of what I want to work on:

- Food and eating habits. Incorporate more 'good' foods and less 'bad' foods. Good foods are ones which may help with fibro and RA as well as lose weight. Lots of whole grains, fresh fruits and veggies and better home made stuff. The problem with me cooking more is I don't have the energy or the stamina to do much more cooking. I'll have to work on this area and figure things out.

- Exercise. I do go to the gym and get an hour of cardio in three times a week. I also then spend another 30 minutes or so doing stretching, free weights, and machines. But I can't go for walks and things like that. Different body parts start hurting once I go too far. I do try to go out and garden and get out in the yard but I want to figure out how can I do more without regretting it. Maybe I should sit down with my physical therapist and get some professional advice.

We already are leaning to the organic, whole food sort of thing so that area is under control. I grew a lot in the garden this year until the drought hit so we didn't get as much food as I thought but this will expand next year. I am not sure what else can I do but I will give it more thought.

I do think I want to explore more changes that I can make to work on this. I think a goal is a good thing and will provide motivation for me.

Thursday, September 15, 2016

Pie in the sky!

The lovely smart people at Komen have announced their new goal: To reduce breast cancer death's by 50% in the next decade. Um, this makes me think of the Deadby2020 people. 

Its so logical to to just come up with a great, yet unattainable, goal that makes an awesome headline so you get great publicity to get more donations for this unrealistic idea. 

Its all about the headlines. This is how the PR machines crank out buzz. Seriously. I used to work in marketing and PR and this is what they do. Now the organizations may think they are reasonable goals but if you think about them, they aren't. 

Can an organization decide that they are going to obliterate a disease over a ten year period that has been researched to death (no pun intended) for a very long time? Does that sound logical? No. Or how about another organization decides that they are going to cut the death rate in half from a disease that has been increasing mortality? If something is still rising, how can they just cut it in half? Again, not logical. Or feasible.

I am sure the people at the both Komen and NBC 2020 think they have come up with good ideas. But honestly I am not sure how realistic they are. And if I recall correctly didn't the urge to end breast cancer by 2020 start before 2010 and now they have just over 3 years to go and I haven't seen much progress. Yes I know there have been incremental advances but no solution yet.

These are basically your pie in the sky PR dreams to raise money.

Wednesday, September 14, 2016

Sleep, Glorious Sleep

So in recent months I have developed the ability to take two hour naps and then get a full night's sleep. I just thought it was just because I need more sleep because some nights I get lots of quality insomnia. But no. My doctor doesn't agree.

No, no, no, no.She is concerned that I get so tired that there might be something going on when I sleep (like snoring) and that my blood oxygen (not blood alcohol - which I often say instead of oxygen for some reason) level has been running lower and lower over the years. So I get to have a sleep test again.

I just had one two years ago. I don't sleep well during a sleep test. I hate the idea of being watched and monitored while I sleep. I sleep best when in a bed with my husband and my two cats. (Maybe I can bring them with me?)

Anyway, grr, grr, grr. But if it makes me end up healthier (but not with a CPAP machine) I will be happy. The idea of a CPAP machine drives me crazy. I am not sure I could sleep with one.

Tuesday, September 13, 2016

That Breast Cancer Bond Thingy

While I was at the gym yesterday, I was on the bike getting my cardio in when I two women who I know started talking next to me. Then one of them came over to said hi. I knew she had a lot of cardiac issues last spring and I asked her how she was doing. She said she is better now but still had some soreness on the side of her rib cage. That didn't seem like a cardio issue so I asked her what it was.

She had a mastectomy because she had her third occurrence of breast cancer. Twice on the left and this third time on the right. And all three were different cancers. I thought wow three different breast cancers and now two separate mastectomies. And over twenty years.

Of course we became instant pals because I told her about my breast cancer history. That breast cancer bond showed up.

I still find it funny when that breast cancer bond shows up. I have no other ailment that inspires such close bonds. ACL injuries? Nope. Fibromyalgia? Nope. Thyroid cancer? Nope. Rheumatoid arthritis? Nope. Breast cancer? Yep! Big time.

I think its a spin-off of all the unity behind pinkification. You get breast cancer and someone wants to stick a pink ribbon on you so you can become best pals.

Monday, September 12, 2016

How can I sit?

My newest advice is don't sit with your legs crossed. The reason for this with my bad knees is that the amount of torque that is put on your tibia when you do that is very high. My right knee (the one with the partially torn ACL) popped and I couldn't move or straighten my leg. It took about 15 minutes before it started to feel better.

I asked the physical therapist at the gym. He was the one who told me I shouldn't sit with my legs crossed.

So if I sit down on the floor, how am I supposed to sit? I can't sit with my legs out straight. I can't bend them to one side because my back would complain. Don't even think about kneeling. That is not possible. I can't stop sitting on the floor either. Sometimes you just need to sit down an take care of something.

All I can say is crap!

Sunday, September 11, 2016

When Will I Learn?

The answer is not anytime soon. Yesterday I went to a craft show and had a booth. I had a blast. I sold tons of my stuff and had a lot of fun at the same time. I might have even made a new friend.

But obviously I am not the best candidate to leave home at 620 AM to get to the show at 7 AM, set up my booth, sit and stand for hours, and break down my booth, and drive home to get home at 530 PM. I also lifted things, dragged things, set up folding tables and a canopy. I pulled things out of my car and then put them back in. I did all those things my doctors are telling me not to do - lift, carry, twist, push, pull, etc.

Today I am paying the price. I am sore and achy. I am sore in places that haven't hurt in recent years. My right knee, which has a partially torn ACL for the last 15 years, is now complaining. Significantly. I think I need ice and elevation for a while to make it feel better. Then I can tell you about the place in my back which had injections on Thursday. Its very unhappy.

So when will I learn? I need to learn that my body is not built for any of this any more. I need to learn to be a nice sedate quiet person. (I almost typed 'sedate little old lady' but I am definitely not ready for that classification. I want my tombstone to say something along the lines of 'that was one hell of a ride'. And I doubt I will ever be called sedate, unless it was in the context of being sedated, queue the Ramones song now.)

I may need to sedate myself to get through the next 24-48 hours. 

But I really need to learn to stop over doing things now so I stop needing to recover from them. 

Friday, September 9, 2016

So What Does RA Feel Like?

There is a big difference between rheumatoid arthritis and osteoarthritis. Osteoarthritis is the kind from overuse that causes your knee/elbow/hand to hurt when you over use it, or maybe even when you aren't using it. Rheumatoid arthritis is systemic and starts with your little joints - like your feet and hands. The joints become achy and bulge and more.

This article explains better than anything else I have seen on what RA really feels like:

Like the fatigue and exhaustion after climbing a mountain or running a marathon.
Like the aches and pains after a significant fall or being in a car accident.
Like the full body aches and pains of a bad case of the flu.
And the stress as you wait for a flare to happen and make all the aches and pains start again.

"However, in order to truly understand, you must envision your injury, the flu, and the exhaustion all occurring at the same time. You must accept that your body would not heal in a few days, you would not be refreshed after a night of good sleep, and your ‘normal' would forever be compromised. But like all RA patients, in time you would learn to adjust. Having Rheumatoid Arthritis is not the end of the world it's just another way of living in it."

Not only that you can't forget the mental confusion sort of like chemo brain.

This is part of my life. And add in all my other health issues and I am the picture of health.

Thursday, September 8, 2016

Finally Some Good News

You can balance out the damage of drinking by exercising. Doesn't this sound too good to be true? It does, and its also true.

New research has been done over years that show:
  • It is impossible to stop people from drinking alcohol - in general. They have passed laws and tried all sort so different things. Even in cultures where alcohol is forbidden, alcohol is still drunk and abused. Alcohol abuse causes a lot of damage to people's bodies. 
So researchers went on another tack. What can be done in order to help people's bodies recover from this abuse from drinking alcohol, not even when it is not abused. Meaning when people drink in what are considered 'normal limits'.

Well there is a 'miracle' cure. Its called exercise. Yes, exercise. The results from the study are:

"Exercising the recommended amount "appeared to wipe off completely" the inflated risk of cancer death resulting from alcohol, said Stamatakis. Similar physical activity also offset the increased risk of all-cause mortality linked to drinking. Exercising more provided slightly better results."


I will continue to do my 3 hours of cardio a week. And maybe feel less guilty about drinking wine with dinner.

Wednesday, September 7, 2016

I Am Done Making Lifestyle Changes

When I was 19 and diagnosed with thyroid cancer, after treatment the doctors told me to stay healthy, take care of myself, eat right and get plenty of rest. Um, great advice. I was in college so it did not exactly fit my lifestyle.

But I did put some deep thought into how I was going to live my life. Having cancer sucks (if you want to disagree with that, please let me know). It was a big wrench in my life. A huge elephant in the room. And one I was not too sure how to approach (there was no social support for cancer people in 1981). However, I decided cancer was not going screw up my life.

I made the decision that I would try to live a healthy life style. I was going to make sure I took care of myself. But I wasn't going to let cancer interfere with my life.

But then cancer decided to show up again nearly 26 years later. I did make some lifestyle changes during chemo. I did change our eating habits to include more fruits and vegetables. I made sure any processed foods were removed from our diet, not that there were that many. I finally quit smoking.

Now, nine years later, I think I am done with altering my lifestyle. I know my primary care doctor is going to tell me to eat more vegetables and stuff like that. But I am done with that.

I enjoy a glass of wine and am not going to stop drinking. I try to get plenty of sleep. I mostly eat right (but some how a bag of potato chips fell into my grocery cart last week). I try to eat plenty of fruits and vegetables. (Potato chips are vegetables aren't they?)

I have enough going on that I am not going to make any more lifestyle changes. I have so may issues right now with my health. I think I have made enough changes. The only way I am making more lifestyle changes if they will cure cancer and get rid of all my other ailments.

Tuesday, September 6, 2016

Sometimes We Just Don't Care Anymore

Yesterday I ran into a friend and we chatted for a while. I have been dealing with my usual ups and downs health wise and some emotional crap. She has also been through a round of health stuff and emotional stuff. We caught up on the most important things going on in our lives for a few minutes and touched on some of the items we have been coping with. We both said sometimes we just don't care anymore.

Call it being overwhelmed. Call it whatever you want. But we just don't care. As a professional patient, sometimes you get so inundated that you really don't give a s**t about anything. Coping with our lives gets so complicated that we just don't care, unless there was something near term fatal, there is nothing that is that important.

I have my annual physical this week and we will talk about my back pains and maybe I should have more imaging on it. Maybe I should have a lot more imaging and testing but I really don't want it now. Unless my doctor tells me I need immediate treatment for something so I don't die, I'm happy to wait. I have so many ailments that how can I have anything more?

My friend, who also has gone through her own personal roller coaster, agreed with me. Right now, she only wants to take a couple vacations and doesn't want to think about emotional or health issues for a while. After she does some travelling, we are going to get together at the end of October for coffee to catch up. Maybe by then we both will care about things again.

Monday, September 5, 2016

That Upcoming Month

This month is September. You know that first month of fall where you can feel the first crispness in the air (especially here in New England), back to school, and all that. It is also:
  • Childhood Cancer Awareness Month
  • National Pediculosis Prevention Month/Head Lice Prevention Month
  • National Recovery Month
  • National Sickle Cell Month
  • National Traumatic Brain Injury Awareness Month
  • Ovarian Cancer Awareness Month
  • Pain Awareness Month
  • Prostate Cancer Awareness Month
  • 18 National HIV/AIDS and Aging Awareness Day
  • 22 Falls Prevention Awareness Day
  • 28 National Women's Health & Fitness Day
The full list contains many more awareness topics. (And the head lice one makes me cringe.) No where does it include the 'Brace for Pinktober' which it should.

Next month is Pinktober, formerly known as October which used to be about Columbus Day, Halloween, costumes and candy, and has some how evolved into being all about pinkification. Instead of everything else which include: 
  • Domestic Violence Awareness Month
  • Eye Injury Prevention Month
  • National Bullying Prevention Month
  • National Down Syndrome Awareness Month
  • 6 National Depression Screening Day ®
  • 12 - 20 Bone and Joint Health Action Week
  • 13 Metastatic Breast Cancer Awareness Day
  • 16 - 22 International Infection Prevention Week
  • 16 World Food Day
  • 22 International Stuttering Awareness Day
  • 23 - 31 Red Ribbon Week
Personally I think bullying is way more important to many more people than breast cancer because everyone has experienced bullying in some way or another. I have no idea what Red Ribbon week stands for but it is probably covered in pink as well. However it and all the other causes in October have been covered in a big pink blob. And the saddest part is that Metastatic Breast Cancer is buried under that big pink cloud and should get more than a day and a lot more focus.

But I digress. This is time for all of us to put some thought into this and ask ourselves how we are going to avoid pinkification in October. We have almost a full month to come up with ways that do not include the color pink.

(The full list of National Health Observances can be found here.)

Sunday, September 4, 2016

My Achy, Achy Back

My back has been very uncooperative recently. Actually its been a real pain, or in a lot of pain. I went to my pain management doctor a while back and he said that my back has been so bad because I haven't had any interventional treatments (a/k/a needles in my back) in a while and its time for another one. That is due for this Thursday.

But in the meantime, my back is giving me lots of grief (to put it nicely). Yesterday and Friday I was walking around hunched over in pain most of the time. My husband even cooked dinner because I was in so much pain.

Last night, I got in bed before 8 PM and took a breakthrough pain pill, an arthritis Tylenol, and a sleeping pill. I didn't wake up until 8 AM and my back feels better.... but not that great. I expect it to act up later today but I am happy with a few mostly pain free hours for now.

I do not expect a massive decrease in pain after Thursday's medical misadventure, but I do expect some improvement. And future needles in my back to help with this.

Saturday, September 3, 2016

Unmet Needs of Cancer People

Finally someone figured out that there might be unmet needs of people after a cancer diagnosis.  A study was recently done:

"Cancer [people*] face unmet needs. These are needs which lack enough service or support for survivors to achieve optimal well-being. Understanding the needs of cancer survivors can help guide services and support to meet the needs of [people*]."

To complete this study, they asked over 9000 people one question: "Please tell us about any needs you have now as a cancer [person*] that ARE NOT being met to your satisfaction". Only one question. But they could answer how they wanted and then they sorted out all the results.

Here are the answers:

Physical needs: 38.2% needs affecting the body, including pain, symptoms, sexual dysfunction, diet, exercise, and rest. 
Financial problems: 20.3% 
Education and information needs: 19.5% needs which were related to unanswered questions and the lack of information about cancer. 
Personal control problems: 16.4%  related to one's ability to maintain autonomy over one's body. Health care system needs: 15.5% 
Access to supplies, medications, and transportation services: 13.8% 
Emotional and mental health problems: 13.7% had emotional and mental health problems
Social support needs: 12.7% 
Problems with social norms, discrimination, misinformation, and policy: 10%
Communication needs: 8.5% 
Problems with their relationship with healthcare workers: 8.25% 

Some groups had more than one problem, in fact women with breast cancer had an average of 2.88 unmet needs.

I was glad to see some kind of research into this. I feel that the medical profession takes care of you during diagnosis and treatment and then that's it. You get a 'come back and see me in 6 months'. And the patient is left grasping at straws. So of course there are more needs for the patients. But the bottom line didn't do much for me at all:

"The authors concluded that the needs of cancer [people*] are important and should be researched further."
I'll just hope for more research.
*I can't use the S-word, I find it offensive.

Friday, September 2, 2016

I Am No Longer A Morning Person

I used to be a morning person. Really. In junior high and high school I would even get up and go ice skating for an hour or two before school. This would mean being at the ice rink as early as 545 AM. I was never the kid who stayed up late. I always went to bed early. In college I only managed to stay up late and practiced the art of napping regularly. That way with a nap, I could still go to the keg party until 2 AM.

When I met my husband, my big fear was that he would be a late night person. That was quickly proved wrong. We both think going to bed at 9 PM is normal. (And we like reading books.) As a military guy he thinks 0500 is a normal wake up time. (It was a match made in heaven.) And every time I saw 0500 I think of Whats-His-Name in Good Morning Vietnam where the 0 stands for Oh-My-God-Its-Early. When I worked full time that was good. We both got up early and went to work. I was often one of the first ones in the office which would mean I could leave by 5 and get home to my husband.

Now I don't work. I need more rest and sleep. When I go to the gym, I usually plan on leaving after rush hour so I can sleep in as needed. I sometimes get up and sometimes I sleep in. I am no longer a morning person.

But every so often, I hate myself because I let my schedule mess me up. Today I am getting my nails done at 1015 AM. That means I need to go to the gym before then. (You can't go to the gym after you get your nails done because it will mess up your toes.) To allow time to drive to the gym, work out, shower after the gym and get to the salon on time, I need to leave here around 7 AM. Eek!

Why did I do that? Why, why, why? The easy answer is I had to post pone my nail appointment from last week and this was the only time available. I hate getting up this early now.  I am no longer an morning person. Maybe I can take a nap this afternoon.

Thursday, September 1, 2016

A Post for Sick People

As a follow up to my earlier post for Friends of Sick People, here's a post for my advice for people who are sick.

As a patient with an icky medical diagnosis, you need to remember the most important person you need to take care of is you. I know you love your children, spouse/partner, and other people close to you but you need to focus on you for a bit. You will need more rest and care than usual. You will spend a lot more time at doctors and other appointments. Any time when you are not at work you will probably be focused on your (lack of ) health. Nap time!

You may find the need to set some rules and requests for other people. You are not being rude, you are letting other people know how they can best help you. You need to rest and take care of yourself, go to doctor appointments (and then recover from them).

Personally I decided I needed to limit social visits and phone calls. Newly diagnosed with cancer, and a cascade of additional medical issues, I decided I was not going to answer a thousand phone calls, texts, and emails asking the same (damn) questions and decided I would provide information for others in my blog. If anyone wanted to know how I was doing, they need to read my blog (unless you are my parents, they are allowed to ask me questions or my husband who went with me to all important appointments). If people wanted to come over, their visit had to be short.

People often want to be helpful but are unsure how they can help. If someone says anything about any kind of help, you can give them concrete ideas on what you need. A casserole for dinner? Help with laundry? Do you need someone to help get your children to school on some days or maybe even getting you to the doctor?

And its not just the physical issues but also your emotional self. At my second cancer diagnosis I decided I needed emotional support and joined a support group before my second surgery. I wasn't going to let cancer suck any more enjoyment out of my life.

If you feel you need more emotional support, start with your doctor or a social worker at your local hospital. They will have access to information on where you can find help. In addition, look for local support groups through your church or local support centers. And the stress? I'm not going there.

It is important to remember that the most important person, emotionally and physically,  is the one with the ailment.  Don't forget!