Wednesday, January 17, 2018

Some Days Are Better Than Others

Yesterday was not one of the good days. No, I did not have a health catastrophe. But I had a couple of emotional/stress related catastrophes. To recover I went to the gym and destress by abusing my body on the stationary bike for a while. (Until my phone started ringing and I had to take the call because of other stress issues.)

And other stress happened. But I took a deep breath, had a glass of wine with dinner (a very yummy meal as we got some acorn fed pork from a friend). With dinner I made an apple chutney with cloves and a sweet potato hash. Cooking helps destress me. The fancier the meal the more stressed I am.

I hope today is a better day. I am staying home because of another tiny snow storm. In the meantime, I am sitting up in bed and hanging out with Boots. That should help my stress too. Boots is always relaxed.

Monday, January 15, 2018

Okay I lied

I did say I would blog more often and get back on regular blogging as part of destressing. But it looks like I lied. But I have a good reason.

My husband and I went away for a few days to take a real break. Luckily (if you want to look at it that way) the cell phone coverage was awful so we couldn't get any calls or texts from home.

We needed a break. I got to walk on the beach (okay it was in Maine and was a bit chilly) three times. We did some shopping. We explored. We ate out. We were lazy. We were on the ocean.

It was very nice. Now I can get back to blogging regularly.

Thursday, January 11, 2018

Your Brain On Cancer

Once you enter cancerland, your brain takes detours all the time. Where do these detours go? BAD PLACES!

"Is that a zit? No, of course not. Its a tumor. Must be skin cancer."
"A headache? No, a brain tumor. Dead in 3 months."
"Is that a swollen lymph node? Quick, leukemia or lymphoma, which one?"

As you can easily see you brain with cancer goes down the wrong roads. Usually in the middle of the night. Or when your are stuck in traffic by yourself.

You start making little deals with yourself. "I'll wait a month and see if its still a problem. No, a month? No three weeks. Wait, two weeks. Maybe ten days. Do I have any blood work coming up? Maybe that will tell me something."

"Wait, am I a lunatic? Actually thinking like this will turn me into a lunatic!"

The big thing is to learn to control your brain so it doesn't take all the detours. That is the really hard part of living with cancer. Your brain develops a this ability to drive you crazy and lead you into bad places. You need to get it under control so you can keep your sanity and avoid things like depression and anxiety.

Its a lifelong problem. It will never go away.  Such is cancerland.

Wednesday, January 10, 2018

Running On Empty

Today I am running on empty. If I had any energy, I would be on my way to the gym. I am not moving yet. Well I had some breakfast but am back in bed. I will meet a friend for lunch later today and then possibly drag myself off to the gym after.

I am exhausted.

Maybe I should go to the doctor or something. No wait, I had three appointments on Monday. And I see my rheumatologist next week. I can nap every day between now and then.

These days I am good for about 10 hours a day total. If I lie down each afternoon for a couple of hours, I can then stay up for dinner and go to bed early.

Talk about lack of quality of life.

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Ignore everything I just wrote. I am whining. I am tired. Maybe I need a morning nap after 9.5 hours of sleep. Crap.

Tuesday, January 9, 2018

Until I Drop

Every day that I go out the door (which is not everyday), I go until I drop or that is what it feels like.

Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.

At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.

Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.

Monday, January 8, 2018

Back On The Fitness Bandwagon

Finally, I am back on the fitness bandwagon. This week is my first full week of three days at the gym. Finally. I am excited, but exhausted.

According to my card at the gym, I had an extended absence from October 4 to December 20. I was so excited to go back. But have forced myself to take it easy. With the help of the physical therapist at the gym, I cut back my exercise plan significantly. I cut down on the weight I use, the time I do cardio, and added a number of specific 'knee strengthening' exercises. I also have spent three weeks only going twice a week.

Its killing me.

Every time I leave the gym, I am exhausted. and I come home and lie down for an hour or so to recover. This is more than in the past. I was so tired yesterday when I got home from the gym, I tried to knit while exhausted and ended up having to pull it all out again and start over.

I guess I got out of shape.

This is a big week. First of all its my first week of going to the gym three times as opposed to twice a week for the past three weeks. Second, I have my three month follow up with the surgeon this morning. I just hope he doesn't tell me to slow down

I feel significantly flabbier these days because I spent three months sitting around. This has put me out of shape. With RA and fibromyalgia I can't just push myself like healthy people. I am going to have to take it slow for a while. Maybe in six months I will be back at my old workout routine and not as exhausted as I have been.

Sunday, January 7, 2018

Cancer Cure?

No there is not a cancer cure. We need to keep remembering that. We are told by our doctors that there is no evidence of disease or some thing along those lines - which just boils down to "we are not capable of finding it yet". If your doctor tells you that you are cured, please find a new one asap.

In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.

"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."

So as good patients we go to our doctors for years and do what they say. But we know we are not cured.

"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.

Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.

And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."

Five years out are we cured? No we are not. So we stop going to our doctors and promise to come back if anything changes.

And even though we know all of the above, there are still a few more caveats.

"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."

So what do we do? We are supposed to live life as if we are cured. We are supposed to like our new normal. But we are not cured and at this point have no chance of being cured. We can just  be happy with remission free survival and no evidence of disease. But not a cure.

Saturday, January 6, 2018

More Bacon Bad News

I learned back in 2016 that bacon is not good for fibromyalgia. That was very sad. Now I have learned that bacon, or other processed meats like sausage, can increase your risk of getting breast cancer significantly.

"From an analysis of more than 260,000 women, researchers found that the risk of breast cancer increased by more than a fifth for those who consumed more than 9 grams of processed meats per day, which is the equivalent of around two sausages per week.

However, the team found no link between red meat intake and the risk of breast cancer."

Well that's good news about red meat. But I would rather have bacon than red meat most of the time. And two sausages or three pieces of bacon is all it takes to increase your risk. 

I am mostly unhappy that yes I can get cancer twice and still have to quit eating some of my favorite foods to help prevent another diagnosis. That's not fair. 

Friday, January 5, 2018

Another Potential Cure And A Stressor

I do not know if I should be elated or frustrated or what. Here is another potential miracle 'cure' for cancer. No, I am not reading the back pages of some magazine but from a very reputable source. I realize these 'breakthroughs' happen all the time but they do cause stress to us cancer people.

I am not sure how much other people realize the amount of stress the constant barrage of potential news telling us about potential cures - with the supposition that it should be positive and provide hope for us. However, there are two problems with this.

The first one is that not all potential 'cures' ever pan out into something real. Second the amount of time to find out if it will actually work - usually more than a decade.  For people diagnosed with late stage cancer often do not have that long to wait. Think about those facts for a moment.

Its like you are chasing a carrot on a stick that keeps on being pulled away from you. Always just out of reach. And flitting away at the last minute. Eternally unavailable. This is incredibly stressful.

I started following all the breast cancer stuff in 2007, a decade ago. Now I am finally seeing some progress from new breakthroughs which were announced then. That was a long time to wait. The only personal benefit I have seen so far is the announcement that I get to stay on Femara (an aromatase inhibitor for probably ten years total). I have seen some other advancements in radiation given differently and for shorter periods of time.

My attitude is to ignore all these advancements. I like the ideas behind  this advancement. But I can't waste time getting hopeful about this one.

"Esculin is a chemical that naturally occurs in the horse chestnut and is beneficial to circulatory health.

Researcher Dr Jan Grimm said: ‘The possibility of developing a topical application from the gel makes this innovation an attractive potential improvement to current techniques of cancer imaging.’"

That is a very short version of the breakthrough. Use the link above to read more. But for me its another carrot on a stick that is held constantly just past my fingertips. I will ignore it until in 20 years it turns into a real advancement to keep my stress level down.

Thursday, January 4, 2018

Life Inside the Bomb Cyclone

All of a sudden the meteorologists are giving us their fancy vocabulary instead of allowing the media to create terms like 'snowmageddon'. So instead of living inside a blizzard (or a snow globe), we are inside the bomb cyclone.

What is it like? Today when I woke up it was not snowing. By 8am it was snowing. The black cat (Evil Kitty) came in with snowflakes on him. I am also watching the barometer (because we have one finally). It was at 29.8 last night, 29.4 this morning, and is already down to 29.3. I am being such a geek.

I did some planning yesterday afternoon. We have been home for days on end. We went out to dinner last week some time. But we also had a snowstorm, house guests, and the holidays. Since then we have been eating leftovers, morning, noon, and night. Last night I suggested we go out to dinner. Which we did. It was nice. I am so sick of my own cooking.

But I digressed. Its snowing like hell right now. The temperature is a balmy 18 degrees. Yesterday was 28. But for a week before that it was around 10 for a high. And Saturday is predicted to be around zero. (Can't wait.)

My plans for the day include catching up on the DVR, knitting, weaving, and reading. I will not leave the house unless I get really motivated. I might make some kind of something out of the last of the left over (damn) lamb from Saturday.  We might even pull out the scrabble game and play for a bit. I will ice my knee for a bit and when my back starts hurting I have my heating pad.

I also do not have any doctor appointments planned until next week. But I do have to make some calls on prescriptions... My insurance company changed mail order prescription provider as of the first of the year and everything is currently a mystery. I also have to make some notes on past and upcoming doctor appointments so I don't lose my mind when I can't remember anything.

So life inside the Bomb Cyclone isn't any more complicated than during any other snow storm. What would I be doing if we weren't having a 'bomb cyclone'? Probably the same thing, except I would not be watching the barometer.

Wednesday, January 3, 2018

Hibernation

I think today and tomorrow I will hibernate. Today is supposed to hit 28 degrees, the first time over 20 degrees in over a week so I might go out for a bit. Overdue library books might motivate me. The cats are going out for a bit. Tomorrow we are due to get a foot of snow. We will both be hibernating with the cats. Friday I will go to the gym and have a friend over for tea.

Hibernating is good and bad. The good thing is I don't go out and slip on the ice and snow and I won't get frostbite. On the down side, it does not help my stress levels. Hibernation can mean isolation. Today I am home alone. Tomorrow, I assume with the weather forecast, that my husband will be home as well. We will 'undecorate' the Christmas tree for fun.

Another portion of my self imposed isolation is lack of people to talk to. Yes I talk to my friends on the phone but most of them work. Thus I don't spend a lot of time on the phone during the day.

I do have a therapist to talk to but I actually haven't seen her in months - September to be precise. I had an October appointment but I couldn't drive so I cancelled it. Then I was put on the cancellation list and they would call me regularly to ask if I could come in for a cancellation that day. Unfortunately I still wasn't driving. Finally I got an appointment for December. Then I got a cold so I cancelled it. Now I have an appointment for the end of the month. Maybe I should call today and see if she has any cancellations...

Maybe I will find a new therapist closer to home. Who has more availability. And who clicks with me. I liked my old therapist but she retired. She 'got' me. She had had breast cancer and had psoriatic arthritis so she could understand where I am coming from. Also she was good at cutting through all the bullshit to help me figure things out.

I think I need a new one.

But first I need to get my day started. I have a list of things to do (if I can find the list). I need to learn to cope better so my hibernation doesn't overtake me.

Tuesday, January 2, 2018

Blogging In The New Year

I have many plans for 2018.

For my health, I hope to have a healthier 2018 than 2017 was. Honestly I do not think I can deal with any more ailments. I hope I can be healthier.

For my blog, I hope to go back to blogging regularly. I started blogging about breast cancer and have continued to blog through the roller coaster of the rest of my health. This all started in 2007, more than ten years ago. While I have been blogging almost every day, in the last few years I might have slowed down a little and skipped a day here and there.

Then last summer, I made the decision, due to travel and other plans, to take my blog off line for a few weeks. While the internet can be a wonderful thing, it can also be stressful and depressing. Many mental health professionals tell people to stay off the internet. So as I would be traveling and would not have access to the internet, I decided just to take a break.

Unfortunately I have not gotten back into regular blogging since. Blogging provides me emotional support. It provides me a way to cope with my feelings and emotions as I deal with my health and other issues. I need to get back to regular blogging to help myself deal with life.

For my stressors, I hope to get back on top of them. I have a couple of significant issues going on in my life that I am not ready to deal with - mostly because they are not resolved. Both are beyond my control. And one of them is not my story to tell so I am not going to blog about it until it is resolved. In the meantime both cause me stress. And I need to work on my coping and get on top of them.

Life with cancer and other medical issues is not easy. I am unique in that my pile of issues is not common. I can find support in many areas but unfortunately not in a single one. This requires me to spread myself thin in coping.

But my goal in 2018 is to blog regularly throughout the year and thus cope better. Here's to a Happy New Year and more blogging!

Thursday, December 28, 2017

Cancer again....

Did you know that if you have cancer once you have a 3.5-36.9% chance of getting an unrelated second cancer (been there, done that). And that 70% of cancer people have a comorbid condition which requires better medical care for the rest of their life. So maybe you smoked and got one cancer, 15 years later you find you have lung cancer, eve though you quit smoking at your first diagnosis.

No I don't make this stuff up. Someone finally did a study on people who have cancer once and rates of developing a new cancer. They found out lots of interesting things:

  • Many people who have cancer once do not take steps to reduce the risk of getting a new cancer.
  • People who are successfully treated for early breast or lung cancer are likely to live a long time, thus increasing their risk of developing a new cancer 
  • They are excluded from clinical trials which may prevent them from having access to the best potential treatment for thei new cancer
So where does this leave us? 
  • Post cancer patients should continue to see specialists after a cancer.
  • They should  receive  counseling on how to reduce their risk of additional cancers even more than people who have not had cancer previously. 
  • Post cancer people should be included in clinical trials. 
Us cancer people need to stick together and reduce our risk of more cancer

Monday, December 25, 2017

Favorites During Chemo

When you are starting chemo, you are warned not to eat your favorite foods during chemo because if chemo makes them taste bad you will never be able to enjoy them again. It's also true of activities that you are able to enjoy doing during chemo.

When I was in chemo, I spent a lot of quality time watching bad tv with the cat sitting next to me. The cat would sit next to me all the time. Watching tv was okay because I could barely focus and could watch the same movies over and over again. They were peripherals.

I still have not eaten one shrimp or scallions. If I smelled scallions during chemo I would have to leave the room because of the smell.  I used to love shrimp and don't really remember eating them much during chemo, but I can't stand them these days.

During chemo, I started knitting and crocheting. This has since lead to weaving and an unhealthy stash of yarn. I don't crochet as muss I used to but I definitely knit and weave. I enjoy them. I find it relaxing. I also enjoy finding colors and texture that work together, or figuring out a new pattern.

But then when knitting or weaving, if I start to think about how I got involved in them again it makes me sad and think about chemo again, and cancer and go back down that cancer road again. Which really sucks in some ways.

But I try to make myself forget all about it and push it out of my brain so I can enjoy myself doing the things I like. Cancer can really suck!

Sunday, December 24, 2017

Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.