Saturday, August 19, 2017

All I Wanted Was Some Sleep

Sleep and rest are very important to me. I can't tell you how much. But if I don't get enough my inner pit bull/space alien shows up and makes everyone unhappy.

Yesterday I was very tired by the time I got home. I am still recovering from my travels where I was definitely in the 'weeds' on sleep and rest as well as the stress of late plane flights and time zone differences. I did sleep in a bit and got caught up on stuff at home before going to the gym. By the time I got home at 330 (and reset all the clocks after a (damn) power outage), I took a shower and put on my pajamas. I was going to go to bed early. I ditched cooking dinner and promoted Chinese food delivered as a better option.

I did go to bed early. I read in bed for a bit before turning off the lights. My husband came in a few hours later and several times started muttering in his sleep about 'evacuations'. I kept replying 'there are no evacuations, go back to sleep'.

Then the cats started, actually they started as soon as I got into bed. We have two: Boots, the 'good' kitty; and Evil Kitty, the not so nice one. Boots can be needy especially since we were gone for so long. He comes and meows. He jumps on the bed. He kneads his paws into me. I walks around on me and then settles his big heavy body however he is comfortable and squishes me while he purrs.

Evil Kitty meows just like Boots, but with a slightly different tone. When Boots comes in, Evil Kitty is sure to follow. He wants attention. He had an 'unfortunate incident' before our vacation which included a 4 cm gash down to the muscle and several layers of stitches and the cone of shame for two weeks. This has made him very needy these days (but also delighted to go out and run around the yard at full speed now that he is allowed out again). He comes in and finds me so he can meow when he feels neglected.

Both cats want me to come out and play - or feed them treats or play with the stupid feather on a string or let them out (even though it was raining and dark).

When I went to bed, I thought we would be fine with the windows open and the ceiling fan on as it was supposed to cool off. That was a bad idea so at one point I got up and shut the windows and turned on the AC so I had hopes for sleeping.

Let me just say my sleep was probably interrupted a more than dozen times - once for AC, several for 'evacuations', multiple for Boots' 'Meow', and many for Evil Kitty's 'meow'. I gave up at 630 this morning and let insisted the damn cats go out. I made coffee and started blogging to rid myself of frustrations. My husband woke up and when I asked he said 'he sleep pretty well'.

I am going back to bed and leaving them all to their own devices until I am rested enough. That could be on Tuesday.

Friday, August 18, 2017

What About Our Brains?

So cancer didn't kill us. Our cancer treatment didn't kill us. But our brains no longer function as well as they did before.

At my knitting group at a cancer support center we routinely forget each other's names.... and claim chemo brain.

I think there are several causes of chemo brain. The biggest and most important one is the so called 'cognitive dysfunction' as a result of the lovely chemicals they pour into us during treatment. There is a lot of information on this as well as the awareness (finally) of the need to do something about this.

I strongly believe that another cause of chemobrain is the stress and ensuing PTSD that causes us to have lapses in our memories as well.

This raises the issue that while a cancer diagnosis and treatment is harsh on our bodies and on our minds, there needs to be a concerted effort (and more research) on how to improve post treatment care and how to prevent more issues for patients.

From a patient's point of view, a cancer diagnosis should not be a life changing event. I can be a life affecting event but it should not alter you forever - either emotionally or physically.

There are many ailments out there without cures but then why is 'cancer' the only word which is so scary? We need to take the fear out cancer and the injuries out of its treatment. This would help our brains a great deal.

Thursday, August 17, 2017

Breaking In A New Doctor

I was disappointed when my endocrinologist left for a new hospital. But I can understand that as the mother of two small children she needed a shorter commute to be able to achieve a good work/life balance. However, that meant I needed a new endocrinologist. I met him yesterday.

Before I met my endocrinologist after I had an appointment with my rheumatologist who is a nice woman in her late 50s/early 60s who has been a doctor for many years. In contrast my endocrinologist joined the hospital in early July after his residency. This means he is a kid, literally. I think I have clothes older than he is.

When I met him, my first sentence was "I have a complicated medical history". At least he had read parts of it but that lead to a big discussion about how I used to have an endocrinologist and then didn't and then finally did again which lead to evil ultrasounds that drove me crazy because they were supposed to be clean but weren't for a couple of years.

He didn't break down and cry when looking at my medical history. We made a deal. I will come back and see him in December after I get more thyroid blood work done. Then every six months I will have more blood work done and I will see him once a year. And I only will have another ultrasound if my thyroid levels go up which would signal a recurrence.

That was a good start. But I wish he would grow up a little bit.....

Wednesday, August 16, 2017

A Big Break

So I have mostly been off line since the end of July. I stayed in one house which had no wifi and iffy cell phone service at best. Then I went on vacation with my husband and stayed in more hotels with iffy wifi and sometimes cell service. You know the two-three bar places where if the wind is blowing in the right direction you can actually connect. The most important thing I used my phone for was for directions and as a back up we had a paper map.

This meant I was really behind on emails by the time I got home. I also hadn't been on facebook or here on my blog. And I didn't get a lot of phone calls or messages. Best of all I could pretend I was a healthy person and I DIDN'T HAVE A SINGLE DOCTOR APPOINTMENT. It was awesome.

I recommend it for everyone. I couldn't remember what day of the week it was, never mind the date. I went into a store last week. I looked at the hours on the door and it said 'open 9-1' and it was 2:30. But then some people walked out of the store so I figured the sign was wrong. When I went in, I asked the woman if she was still open despite the sign on the door. Her response was 'its Friday, not Saturday'. That was great.

I need more of that in my life. I didn't have to run from the gym to a doctor appointment to anything else. I didn't have to worry about anything. The two of us had a blast - except for the day it was clear we had spent too much time in the car together so that there was a very quiet period for the better part of the day.

My non-doctor prescription is that everyone take a disconnected vacation.

Friday, August 4, 2017

Dumb Things Cancer People Hear

I know I am supposed to be away but this one resonates... Some people are just plain stupid. Read it here.

Saturday, July 29, 2017

The Great Off Line Experiment

In the next few weeks I will do some travelling. During that time I will have limited access to the internet. I will have my phone and will mostly be where phones work. But I may not have access to the holy grail of wifi for good portions of it.

Personally I do not think I will have that much of a problem with being off line. I think its healthy to disconnect. I will have things like books (the paper kind), knitting, one of my looms for a portion of it, and a crossword puzzle book. There will also be time for things like 'conversation' without any emojis. We may or may not have TV either. But we will have swimming in a lake, boating on said lake, napping, reading, and other congenial activities. We will also have the ability to ignore all political news - which might be the best part.

I will have the next five days of no technology. Then I will be home for a couple of days. Then we will depart for 10 days of limited technology.

I realize there will be some others who might freak out at the thought of disconnecting. Those people are probably in the most need of unplugging. I used to work with a guy who would go to the beach for a vacation with his wife and four kids and then wonder why his wife would get mad at him when he made work calls from his cell phone while on the beach.

I wonder how many others can unplug for several days at a time without going crazy. So put down your phones, turn off the TV, get outside and breath some fresh air while you figure out how to fill your time.

Friday, July 28, 2017

Surgical Drains

I think everyone who has ever had a surgical drain can only think about them with a shudder because they are so awful. I hated mine. It was awful. And full of really nasty looking stuff. When they took it out, it hurt so much that the surgeon even apologized several times after.

We have two cats. Boots is the good cat. He likes to cuddle. He likes to have his ears scratched. He likes to sleep on me at night. He wants attention. He is very nice.

Then there is ZDpot a/k/a Evil Kitty. Why do we call him Evil Kitty (or EK for short)? Because he is the food stealer, fight starter, etc. And he basically does what he damn well pleases - he refuses to listen to reason.
Evil Kitty got out this week. Well he is an outdoor cat and he failed to come home at night, which is not that unusual. What is unusual is that he failed to come home for breakfast - this is the cat who never passes up food. I was worried. I asked the neighbors. He finally wandered in 48 hours later. With a big gash on his right hip. And some other wear and tear. I took him to the vet. They were even impressed with the size of his gash. He is having surgery this afternoon. He will probably get a surgical drain, and a collar of shame.

This will be so much fun. He is not the most cooperative cat in the world. I cannot see how he will deal with a surgical drain. This is not going to be fun. I am sure it will be even less fun than the surgical drain I had.

Thursday, July 27, 2017

Cancer Spans Everything

Cancer brings us together and rips us apart. Cancer knows no boundaries - it crosses race, age, sex, families, and even politics.

Cancer can bring people together. To those with cancer, it is an instant bond to others with the disease. You can walk into a chemo waiting room, a support group, a fundraiser, or whatever. All of us with cancer instantly have something to talk about and unit together. It can join a family who is faced with the impending death of a loved one to repair broken or damaged family bonds.

Cancer can also rip us apart. For those selfish or inconsiderate enough not to care about others, they do not notice that someone is ill and in treatment. It can rip family members apart. I know several couples who split up when a cancer diagnosis hit their family simply because one of them could not handle the stress on their diagnosis.

However, cancer is not a nice thing. It takes people away from their friends and family too soon. It causes all kinds of pain and suffering to the patient.

But we need to remember it can bring us together. We need to remember this. John McCain, as Ted Kennedy did earlier, got up and said its time to work together. What does it take for us to remember cancer has no boundaries.

Monday, July 24, 2017

How Soon To Start Treatment?

I never realized how important starting cancer treatment quickly was. I remember my surgeon telling me at one point I had plenty of time to wait before making decisions for my treatment. I guess that wasn't true.

There is a new study (because we always need new studies) to focus on the TTI (Time to Treatment Initiation) from date of diagnosis. As that increases, the cancer death rates increase as well. How nice. So don't wait, start NOW!

Research by the Cleveland Clinic showed a increase from 21 to 29 days showed increased mortality.

"Longer delays between diagnosis and initial treatment were associated with worsened overall survival for stages I and II breast, lung, renal and pancreas cancers, and stage II colorectal cancers, with increased risk of mortality of 1.2 percent to 3.2 percent per week of delay, adjusting for comorbidities and other variables.

Prolonged TTI of greater than six weeks was associated with substantially worsened survival. For example, five-year survival for stage I non-small cell lung cancer was 56 percent for TTI of less than or equal to six weeks, versus 43 percent for TTI greater than six weeks, and for stage I pancreas cancer was 38 percent versus 29 percent, respectively."

If I think back to when I was diagnosed with breast cancer officially at my biopsy on May 31, had my first surgery June 19, my second surgery July 5, and began chemo at the beginning of August. I would assume that the TTI is from May 31 to June 19 which is a whopping 19 days so maybe I was on the safe side.

But what if I had stalled and gone for a second opinion before surgery? That would have pushed it all out for much longer. Maybe its a good thing I didn't wait.

Sunday, July 23, 2017

Mammograms Under or Over Diagnosis?

There has been a long debate, since mammograms were put into use in the early 1980s, if they over or under diagnose breast cancer. Now someone has finally decided to take another look at all this data. There are two main parts to this issue: Are small tumors that would never grow into something 'bad' being over diagnosed and over treated? Are too many other tumors missed in mammograms? This group of researchers examined data from 2001 to 2013 and determined that:

"The results showed that most overdiagnosis occurred in older patients with biologically favorable, slow-growing tumors."

These tumors are ones that will not become problematic 'go bad' for 15-20 years. These do not need treatment..... In addition they revised their thinking on which tumors were going to become 'problematic' (what a sanitary word for cancer diagnosis).  

""Until now, we thought that the lead time, or time until a cancer becomes problematic for a patient, for most breast cancers was about three or four years. This paper shows that lead times vary widely depending on the tumor type. A large portion of aggressive cancers have a lead time of two years or less, whereas another large portion of breast cancers grow so slowly that the lead time is 15 to 20 years,...""

This is new thinking.

"It is important that we educate physicians, patients, and the public on the indolent, slow-growing nature of some breast cancers. This knowledge will allow us to individualize treatment options, provide 'personalized medicine,' and avoid the major harms of overdiagnosis, which can result in overtreatment and the anxiety and fear that a cancer diagnosis causes,..."

So maybe instead of blindly following what we have been told in the past, we look at what is now known.... This is called progress. 

Thursday, July 20, 2017

Determination only

Yesterday, I was talking to our cat feeder and her husband as they were walking their extremely large, muscled dogs past our house. We need to catch up on the latest cat issues (they are on a diet) before we leave on vacation.

While we were chatting, their dogs were looking at our lawn very intently because they know we have cats who are often outside. They can't chase them because they are on leashes. One of them is actually scared of the cat they have at home. But they can look. And bark a bit until they are stopped.

Boots is my little tag along. If he can find me, he will follow me. He loves me because I feed him, and because I found him when he was lost outside when we moved last year in January. And I stick up for him when Evil Kitty picks on him.

We were chatting and Boots had to follow me. Using sheer determination he walked up the hill until he was within ten feet of me and two large dogs. He just gave them a little stare down and then, while ignoring them, focused on me until the conversation ended. Once the cat sitter and her husband left with the dogs, he waited patiently for me to walk back to the house in hopes of a snack. He doesn't like dogs but its more important to him that he hangs out with me at all times.

Sometimes you have to pull yourself through life with determination only as Boots does. He wants to hang with me and he just ignores the bad part - the damn dogs. I do this too. I use determination only to get through life. I ignore the bad stuff and just push through. I can't let myself worry too much about the bad stuff a doctor might say to me, I am just determination to get through. Then I get to go home and hang out with Boots.

Monday, July 17, 2017

The Most Important Part of My Health

Last week my husband has accused me of being cranky several times. My back has been hurting more than it is supposed to (considering all the medications I have to stop that). I have not been in a good mood.

Saturday night I didn't sleep well. I am blaming the (damn) cat for that as he insisted on spending the night out and I got up four times to see if he would come in. My husband tells me that he will be fine when he spends the night out but I know we have coyotes, fisher cats, bobcats, and foxes who would be happy to make a meal of him. And he still doesn't have enough life skills to know about all the potential perils of the great outdoors.

Okay, I got a little side-tracked there.

I hadn't had a lot of sleep last week in general. My body now needs a few nights of at least 10 hours of sleep each day. This doesn't mean lying in bed and taking it easy or napping. It needs 10 straight hours of sleep.

Last night, I went to bed at 9 and fell asleep. Actually I got in bed around 7 because I was tired and read and knitted. My light went out at 9 and I woke up after 7 this morning. I slept through my husband's alarm and morning routine. But I feel great. I really do. I slept well. I feel very rested. I can attempt to be a normal person today (unless I do something stupid like pretend I am a normal person and overdo things).

So the most important part of my health is sleep. Lots of good sleep.

So my non-doctor prescription if you aren't feeling well is to get a good night's sleep.

Friday, July 14, 2017

Another 'Oops, We Forgot To Tell You This'

Another little bitty oopsie. Many women after a mastectomy for breast cancer get implants to make them more even again. Then there are the hundreds of thousands of women who seek implants to enhance their bodies. And then comes the oopsie.

There is a rare cancer which is caused by implants.

"The American Society of Plastic Surgeons says around 550,000 women last year received breast implants, but the FDA published a report this year linking a rare cancer to the implants.

So far, there have been 359 reported cases globally, including nine deaths.

The risk is low, but one in 30,000 women with implants could develop it,..."

Nice! Oops!

I am sure there are other potential side effects from breast implants but cancer isn't a fun one. Especially if you got implants after breast cancer - part of the cure caused a new cancer?

However the biggest part of the cure for the new cancer is to remove the implants. So have another surgery to fix the last surgery

Then there is a woman in Montana whose insurance company won't pay for the removal of her implants even though they caused her cancer. The company claims they are cosmetic - which they were originally - so they won't cover their removal. 

This woman, Kimra Rogers, is fighting her insurance company to cover the removal of her implants. And she is also fighting to raise awareness for this type of cancer because she was told that the implants were 100% safe.

Oops, again. 

While we might dislike the long list of potential side effects that accompany everything but this is one case where they made a tiny oops.

Thursday, July 13, 2017

Thursdays Are My Favorite

This morning I realized something. Thursdays are my favorite day. Why? Because I have my knitting group.

I really like my knitting group. When we moved a year and a half ago, I wanted to continue to do something cancer support related. Not necessarily something to provide me with support for my cancer crap. But more for something to connect me to the cancer community and other cancer people.

We didn't really move that far. Probably only 10 miles as the crow flies. But in little New England towns, that can be far, far away. The town where we lived is much larger geographically than our old town but has fewer people. To get to where we used to live, we have to go to three other towns. So culturally it's another place. My father tells me we no longer have Boston weather but New Hampshire weather.

Anyway, I had to find a new place to connect to the cancer community so I approached a cancer support center closer to our new house now than before we moved. We agreed I would start a knitting group in the spring.

It's been doing pretty well, with ups and downs in terms of members. We have a core group that comes regularly. We are fairly flexible in terms of who we like to join us. The main requirement do some sort of craft that can be brought to the group - we have cross stitchers as well as knitters and crocheters and have a beader coming to join us. And probably our best knitter is a gentleman who knits items for his children and grandchildren.

The only other requirement is that everyone has to have had cancer. We initially were pretty open on who could join us. But after a few uncomfortable sessions with people who just didn't 'get it', we decided that we really only wanted to have people who 'got it' because they had had cancer too.

As a result we have a group which communicates on many levels about cancer. Our topics can be wide ranging. But its always a wonderful conversation. It seems we have connected in different ways and our crafts help bridge our differences. Some participants have said its better than their other support groups.

I look forward to every Thursday afternoon where for two hours I connect with people who understand my life in a different way than many other people.

Wednesday, July 12, 2017

Too Tired

I was going to write I am too tired to blog. But I will squeeze a few words out. But this is my life. I felt okay this morning. Did some weeding in the heat and 100% humidity and then went to the gym in the air conditioning. After I cooled off I took the car for an oil change at the dealer.

I had to wait standing up at the dealer for a good five minutes to get checked in. That makes me tired and cranky. They were very nice about it and even told me about a bakery where I could get a snack while I waited. It was a five minute walk. That was too far for me to walk so I sat at the dealer.

Now that I am home and have had something to eat I am going to continue to sit here for a few hours because I am too tired.

Tuesday, July 11, 2017

Stop Changing Your Mind Please

[A breast cancer tumor imaged with a technique that highlights aspects of its microenvironment.
NATIONAL CANCER INSTITUTE/UNIV. OF CHICAGO COMPREHENSIVE CANCER CENTER]I really wish they would stop changing their mind. I know several women who have had chemo before surgery to reduce the size of their tumor. If you have a woman who has a fairly large tumor and chemo before surgery has the benefit of reducing their surgery - maybe from a mastectomy to a lumpectomy. This is actually a huge benefit. The surgery is so much less drastic. 

"The main goal of pre-operative (neoadjuvant) chemotherapy for breast cancer is to shrink tumors so women can have a lumpectomy rather than a more invasive mastectomy. It was therefore initially used only on large tumors after being introduced about 25 years ago. But as fewer and fewer women were diagnosed with large breast tumors, pre-op chemo began to be used in patients with smaller cancers, too, in the hope that it would extend survival."

However new research says it isn't a good idea. Nice. How helpful. 

"But pre-op chemo can, instead, promote metastasis, scientists concluded from experiments in lab mice and human tissue, published in Science Translational Medicine.

The reason is that standard pre-op chemotherapies for breast cancer — paclitaxel, doxorubicin, and cyclophosphamide — affect the body’s on-ramps to the highways of metastasis, said biologist John Condeelis of Albert Einstein College of Medicine, senior author of the new study.

Called “tumor microenvironments of metastasis,” these on-ramps are sites on blood vessels that special immune cells flock to. If the immune cells hook up with a tumor cell, they usher it into a blood vessel like a Lyft picking up a passenger. Since blood vessels are the highways to distant organs, the result is metastasis, or the spread of cancer to far-flung sites."

Go read the rest of the article here. I am disappointed in this.

Personally, I find this upsetting. It clearly shows a loophole in cancer treatment. What may have been a great idea for many years is being shown potentially as a huge mistake. Yes more research is needed but seriously? Cancer treatment is clearly a crap shoot still.

Monday, July 10, 2017

Over Reactions

I have no idea why my body has changed so much but it has. And I tend to blame chemo for the changes. Since chemo, I have reactions to tons of things. The list of things I am allergic to has grown immensely. I am even allergic to Benadryl....

I will say its been a very long time since I was stung by a bee. That is approximately 1986 when I stepped on a bee that had come in through the wall of our kitchen in an apartment. I remember it as being extremely painful because there is no flab on your toe to absorb the venom. I ended up calling the pharmacist to ask for options.... But I also remember it going away mostly by the next day.

I was stung one other time that I remember being stung by a bee was as a child....

On Friday I had a bit of an adventure. I was feeling better so I went and poked around in the garden, did some weeding, admired my tiny little green tomatoes, and watered a little bit. My husband had gotten stung by a bee a couple of weeks ago near our rhododendrons out front. 

All of a sudden Friday, I got stung twice by bees and started running to the front door as I got stung two more times. I got stung one last time at the front door. I have I think a total of six stings: left elbow, left knee cap, left lower calf, behind my right knee, right upper calf and right ankle. As it has been so long since I was last stung, I waited a little bit to make sure I was feeling okay and wasn't having a severe reaction. That's a lot of stings. 

Now it is almost 72 hours and they itch like mad! I have tried all sorts of things to get them to stop. I did some research and got some spray on anti-histamine 

That's the bite on my lower left calf. Look how big it is. Some of the other's are even bigger. My research told me this:

"Normal local reactions

You’re likely to develop a raised welt around the sting site. A tiny white mark may be visible in the middle of the welt where the stinger punctured your skin. Usually, the pain and swelling recedes within several hours of being stung. Unless you’re allergic, most bee stings can be treated at home.
Large local reactions
“Large local reactions” is a term used to describe more pronounced symptoms associated with a wasp or bee sting. People who have large local reactions may be allergic to wasp stings, but don’t experience life-threatening symptoms, such as anaphylactic shock. Large local reactions to wasp stings include extreme redness and swelling that increases for two or three days after the sting. Nausea and vomiting can also occur." 

Most of the time, large local reactions subside on their own over the course of a week or so. Let your doctor know if you have a large local reaction after a wasp sting. They may direct you to take an over-the-counter antihistamine medication (such as Benadryl) to reduce your discomfort."

A week or so? Thanks I can't wait to itch like this for four more days. I'm still blaming chemo. Damnit.

Sunday, July 9, 2017

Its Not Just A Cold Anymore

I got a cold last Sunday. This is day 8. While I feel better mostly, I know better than to push myself. Hence I stayed home mostly for a week. I did not go to the gym. I did not contaminate my knitting group full of cancer people who would not welcome germs. I didn't take my 88 year old father to his doctor appointments. I skipped all July Fourth events. I didn't do much of anything beside catching up on my knitting and going on an emergency kleenex run when I ran out. (And getting stung by wasps when I inadvertently discovered the wasp nest six feet from our front door.)

I did all that on purpose. My goal is not to be sick for two weeks.

Last night we actually went out to dinner. It was nice. Then I went to bed at 9 pm (not that it was that early for me). But it was very nice to get out.

Tentative plans for today include going out to lunch with a friend. That's it. I am not going that far. I am not staying out for long.

Tomorrow I hope to go to the gym and meet a friend for coffee on the way home. I am feeling better and will slowly return to normal but will not push myself.

With a compromised immune system, I have to be very careful. (Think of when you were in chemo and told to be careful with exposure to germs.)

Unfortunately, I hope to look forward to another 30 years of this. But I'm still here.

Friday, July 7, 2017

Its Not All Peaches And Roses

Life as an unhealthy person is not all peaches and roses.... Wednesday I wrote about Claire the amazing woman with CF who is full of energy and fun and talks about things we don't want to talk about - like dying. Anyway, she says she wants to wrote a book but not one about a 'happy sick person'. There are a lot of books out there about 'happy sick' people but reading them doesn't necessarily make you feel happy for them.

Honestly who can put a perky spin on being sick? One of the many downsides of life with chronic illnesses is that a little thing becomes a big thing. You have no idea.

Anyway, the world is papered with books about being cheerful, finding yourself, eating better, or walking/riding/hiking thousands of miles or something unimaginable to me.

After my first cancer diagnosis, I picked up your basic paperback fiction romance novel and found out it was about a woman who had some sort of heart defect and how she lived with it. I was not ready to read it and threw it across the room. Eventually a few years later I finished it and like it.

Later, after breast cancer I was older and more adventuresome in my reading. I read and liked 'Crazy Sexy Cancer' by Kris Carr. (I highly recommend that book and website and movie - hint, it's all about attitude). What I did like was the fact that her life was not all peaches and roses when she was diagnosed. She showed us how to cope and accept and develop the cancer attitude for making life good again - I mean what more can you ask for?

I have a bunch of other books that were noteworthy about life with cancer/other terminal/chronic ailment. If you search on the tag 'Books' on my blog, you might find them. I did read a graphic (cartoon) book that was about a woman with breast cancer (and I can't remember that title and I didn't put it in my blog). It ends when she goes to her last PET scan.... You get the idea.... I was very upset after reading that one.

I think somewhere out there is a happy medium of what life is like in the unhealthiness world in which some of us reside. I think Kris Carr is one who comes very close. But there are so many who miss the mark. Getting breast cancer and writing a book how our heroine starts wearing all pink, goes on long walks and ends up doing every Komen walk around the country, and finds God along the way, does nothing to help me feel better.

[I do not mean to offend anyone and their religion. Everyone believes differently. God did not give you your ailment. God is not going to cure your ailment. Talking or praying to God may help you feel better. However, he does not have the magic wand all of us sick people wish for.]

Anyway, we all do what we can to feel better after we find out we are not that healthy. Books about the not so rosy side of life post diagnosis can be very helpful. But the badly written ones, not so much

Wednesday, July 5, 2017

Live Life the Fullest

Don't let anything hold you back in your pursuit to live life to the fullest. You want to experience everything and anything (well except maybe eating insects, flydiving, going over Niagara Falls in a barrel, or other really weird things). Get out there and do as many as many things as you can.

I think I want to say that I don't think you need to constantly push yourself to do something every minute. Sometimes you need to sit there and appreciate what you just accomplished. You should also share your experiences with others who might benefit from what you have done.

Do not let your health hold you back. Okay, if you break your leg or blow out your knee, you can put off climbing Kilimanjaro until it is healed.

I had always wanted to spend a semester or school year in Europe studying during college. Even though I was treated for thyroid cancer in the summer between my freshman and sophomore years, I still went to France for my spring semester of my junior year. I brought several bottles of my thyroid replacement medication and information on how and who to contact at the American College in Paris in case I needed medical care and set off. You have to remember this was before fax machines, cell phones, and the internet so the only way to contact the US from Europe was by slow air mail or very expensive international calls. My health wasn't going to stop me.

Since then I have traveled far and wide. I have been to Europe and Japan. I have been to events all over. I have climbed mountains. I have skied. I have done lots of things. I had a lot of fun (getting my body into the shape it is now).

Every so often I run into someone who is out there living life as full as they can. Claire Wineland is one of those people. I would love to meet her someday but for now I will continue to read about her and follow her. This article starts off with:

"As a small child, she played hide-and-seek with nurses, ripped out IVs to race around the hospital floor naked and left an explosion of glitter in her wake.

As a teen, she got boys to carry her uphill when she was tired, taught her best friend how to flirt and watched her doctor squirm as he gave her the safe-sex talk.

And as an adult, Claire Wineland has continued living out loud, even as her body fails her.
Claire, 20, has cystic fibrosis, a genetic and terminal progressive disease that's landed her in the hospital for a quarter of her life. Ask what's on her bucket list, and she'll say she doesn't have one.
Fixating on a checklist of goals before she goes "sounds exhausting," she says, especially "when you've been dying your whole life." Instead, she'd rather focus on doing all she can in each moment."

She also has written a book (but not one about a happy sick person), heads a foundation, and makes videos among other things. One of the videos I do like is 'Dying 101':

Get moving and fulfill your dreams!

Tuesday, July 4, 2017

I Need Playtime Too

A new study finds that pediatric cancer patients can avoid anxiety required anesthesia before radiation treatment... by... (wait for it) ...substituting playtime. This was the result of  work by a nurse at Johns Hopkins who found that there was no standard protocol other than to routinely give anesthesia to pediatric patients.

"What we found was that we had no standard; we were just basically signing kids up for anesthesia because they were anxious, because of the unknowns. We had complications happen under anesthesia and radiation. Another component was that it was taking up a lot of time. Now, with this program, we can avoid the risk and complications that come along with anesthesia as well as give back that precious time to the family. Kids get stressed staying in radiation too long."
There is a commercial that features a male pediatric oncology nurse giving a patient a shot (I think) and distracts her by singing a song with her. Why only for kids?

I could use playtime to avoid anesthesia before some stressful occasions. Why not?

Honestly every time I go for some stupid scan I don't want to sit in a chair and stress about what they may or may not find after two cancer diagnoses. Nor do I want to watch a TV program on something I don't care about. Nor do I want to pretend to read a book or articles on my tablet.

I would prefer to be playing games and having fun. Or out having coffee with a friend. Or anywhere but in a sterile waiting room watching my blood pressure go through the roof.

Let's start a movement to make hospital waiting rooms less sterile and more focused on patients needs. Where I go waiting rooms have padded chairs, wifi, TV, and usually exterior windows. I want more than that. I want snacks. I want volunteers wandering around talking to patients to help them relax. I want bright colors. (I really just want to be healthy and never have to go to the hospital but I also know that's not going to happen.)

Medical care has come a long way in terms of being more patient friendly but I think there is a long way to go to help reduce patient stress.

Monday, July 3, 2017

The Truth, The Whole Truth, Nothing But The Truth

The truth about cancer treatment is very complicated. The treatment options are very deep, strong, and harsh even. They are just drastic. Because they are so drastic, they can very well cause a lot of post treatment effects - i.e., side effects. The information on side effects is not a list, but a mountain.

Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably  not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.

Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.

At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.

Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.

But as patients, we need the truth, the whole truth, and nothing but the truth.

"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."

Just tell us like it is please.

Sunday, July 2, 2017

Waiting Around

I hate waiting. I pride myself on being on time. I think that people who constantly run late are rude and selfish because they are making people wait on them. They are not considering anyone else's feelings or needs. Basically that is just damn rude.

Social occasions aside, waiting for doctors is even worse. Especially when you are not feeling well. This is one reason why I do not like Emergency Rooms and will only go if I am literally dripping blood (and will therefore be put to the front of the line) is I can't stand waiting around.

A year or so ago, my opthamologist asked me to find a new one. Basically I got fired by my eye doctor because I dared to complain about waiting so long and not being a good patient. I was pissed off about waiting and decided to complain on Yelp.

In comparison the hospital I go to has had a policy for a long time that patients should not be kept waiting more than 15 minutes. I had a doctor in the 1980s who had a sign on her office door that said "Patients Should Not Be Kept Waiting For More Than 15 Minutes". Sometimes this works, and sometimes it doesn't.

In recent years it has gotten even better. Some departments which seem to run late often keep white boards posted in the waiting rooms telling you about doctors who are running being. All departments when you check in usually tell you if a doctor is running behind. And they have signs in the waiting rooms encouraging you to ask if your doctor is running behind if you are kept waiting more than 15 minutes past your scheduled time.

I love this policy. I love being kept on top of how long it will be.

I just read an article this morning about how some other Boston area hospitals are finally understanding the importance of not keeping patients waiting. Their reason? Patients are finally speaking out on social media on being kept waiting.

If you are a patient at the 'holy hospital of the best doctors in five hundred miles' you are supposed to sit quietly and wait to see the doctor who is going to cure you of everything quietly for hours and hours. I think that's crap. Social media is putting pressure on them to finally act. How nice.

As a patient, I say 'speak up on social media' to pressure your medical center to treat you as a patient who is a person as well, instead of being a patient patient.

Friday, June 30, 2017

Another Piece of Bad (And Misunderstood) Advice

Who has heard that green tea is good for people with cancer and for preventing cancer? 'Raises hand'

Yes I have heard that. I don't really like green tea that much but I do drink it occasionally. I know people who purposely drink green tea because it is 'better' for them. So here's the bad news:

"Green tea and green tea extracts are widely consumed by patients with cancer. Yet overall there is no clinical evidence that green tea or its chemical components slow tumor progression in humans — and importantly, there is some evidence that green tea compounds might interfere with anticancer treatment."

There is some early stage (stage I) research that suggest green tea intake helps:
- reduce the risk of leukemia, after 20 years of consumption
- reduce the risk of prostate, liver,and endometrial cancers, if you drink 7 cups a day
- reduce the risk of diarrhea if you take the extract, but can increase the risk of skin rash and nausea 

Green tea has also been found to prevent the benefits of chemo (chemopreventive) for breast cancer patients. 

But wait there is more:
"A meta-analysis conducted by Chinese researchers of published epidemiological studies found insufficient evidence to conclude that there is an association between green tea consumption and esophageal cancer, despite a subgroup analysis suggesting a possible risk reduction for women.

"Green tea consumption does not appear to affect the risk of pancreatic cancer."

So the take home conclusion is:

"The evidence base is immature and equivocal. There is limited epidemiologic and lab-experiment evidence that green tea and green tea compounds are capable at high concentrations of affecting tumor biology. There is not, however, substantive clinical evidence that this potential translates to clinically meaningful cancer prevention or treatment benefits in humans."

What this means is that there is no real good evidence saying green tea is really that much better for you and can mess with your cancer treatment.

As a group of people, I think we have learned to quickly grab on to what we see as 'good news' or something 'good' to eat or drink because some study said so. When we need to realize there is a good reason more research is often needed. 

Thursday, June 29, 2017

My Health Complicates Everything

I have too many ailments. Combined they interact and cause all kinds of problems. Normal people can have knee problems and then surgery to fix them. Me? Not so much.

I hurt my right knee skiing in 2001 and had arthroscopic surgery to fix as much as possible. My right knee became my bad knee. After surgery, the surgeon said if it ever stops locking up come back and see me again.

In 2015 I fell in our backyard and tore my left ACL. My left knee became my bad knee and my right knee became my good (or not quite as bad) knee. I then started over stressing my right knee which wasn't happy. In the fall of 2016, my right knee started locking up so I went back to my knee surgeon to talk about that.

Yesterday I went back to my knee surgeon who has been following me for both knees for the past year or so. And here's the bad news.

There is something going on with my right knee which causes it to lock up. It freezes and causes lots of pain. I feel my knee click back in place after a couple of minutes and the pain stops. I explained to my doctor that its not the aching pain that causes the problem its the locking and pain that I am concerned about. (Its not fun when it happens.)

Normal people would have the surgeon go in and clean up any tears that are causing the problem. He thinks its a piece of meniscus that sometimes sticks up and jams my knee. But with my medical history of rheumatoid and osteoarthritis, he is concerned that it won't heal well and I will be left with more problems.

I have to go for a second opinion. I can't wait. I just want my knee to stop locking up. It hurts like hell when it does that. My too many ailments make it difficult for me to be treated. (Never mind my medical allergies as well.)

Tuesday, June 27, 2017

Side Effects Vs. Costs

This morning an email on the discontinuation of a certain drug which the article says is a good thing because it will save billions of dollars. The drug in question is TKI and is used to treat CML. It works well at putting people in remission but comes with a high financial cost, $147,000 per year and causes many side effects.

This made me think. Which is more important - financial cost or side effects?

I am torn on this one. A drug that costs $147,000 per year is phenomenally expensive. If it was a branded drug on my insurance I would be charged probably 40% of that cost. Could I afford that? Even without pulling out a calculator that would be somewhere north of $50,000 each year. I do not have that kind of money.

I have problems with my high cost medications. I am on several that each cost me over $1000/year - which to me is a lot.

Then there is the side effect issue. I am on medications for the side effects of some of my other medications. I also have to have regular blood work and chest x-rays done to monitor for other side effects. (Sometimes I think I might be better off if I took no medications at all.)

But this is a bit of a conundrum - side effects or costs.

Monday, June 26, 2017

People Are Still People Even With Cancer

Life does not stop with a cancer diagnosis. It should not. If you have cancer, you are still a person. You do not need to let cancer take over everything. You are still a human being and need to do normal human being things. Like going on vacation. Or moving to another state.

If you want to go on a vacation, all you need to do is talk to your oncologist and they will help you figure out what changes need to be made. If you are in the middle of chemo, you can probably take a week off. Its not that complicated.

Your cancer diagnosis does not get to swallow you whole and take over everything in your life. People in cancer treatment also do things like visit friends, go shopping, go to the movies, and all sorts of other normal every day things.

The emotional break you get on vacation while you are dealing with cancer can be very beneficial. It can be very nice to just get away and not think about infusions, surgery, oncologists, tumors, and all sorts of fun stuff. (But if its related to cancer it is all crap.)

So go plan that vacation and have fun. You may not be up to sky diving but you can still go to the beach or admire a beautiful view.

Sunday, June 25, 2017

Standing Up For Myself

I have to learn that standing up for myself again.... I have to do better with that word 'no' again. There is only so much of me - not the flabby part (I have plenty of that) - my physical abilities are what is limited. I have to be careful on what I do and how much I do.

For example, I am slowly learning not to be the perfect hostess who  jumps up to help anyone who asks a question while in our house. I just can't. If I jump up for every request, I won't have any energy left. If its a good friend who wants a corkscrew, I am happy to say it is in the top drawer of the side board... If its not that close a friend, I am happy to hand them the corkscrew and let them open their own wine.

I am also learning to use the word 'no' again. If someone wants me to go some place, I need a good reason to go with them. Basically, do I really want to go. For example, if someone wants to go shopping for one of the following items, I will be happy to go, for a short while: used clothing, yarn, or plants. If its for something else, I need a good reason to go with them. I have to decide basically if its worth the effort on my part. Its amazing how something little, like out to lunch, can take a lot out of me.

My best remedy for doing to much is lying in bed. This morning I finally got out of bed at 1145AM. I did go to bed around 945PM. So that's only 14 hours of rest. We did have a few friends over for dinner last night and I probably spent too much time getting ready. But that long lying down made me feel like a new(er) person. Today I have finally made it to my computer at 1pm. I will be lazy the rest of the day as I plan on how I will use the word 'no' this week.

I really have to get better at standing up for myself.

Friday, June 23, 2017

I've Been Away

As us New Englanders say, I have been on the Cape for a few days. What does that mean? I went to Cape Cod. I stayed with a friend and her significant other for a few days at the house they rented for a month.

Her significant other had to go back home for a few days so the two of us had fun shopping at thrift stores, consignment stores, yarn stores, and book stores. I was on the hunt for a few items - spoon rest and clock for the downstairs. I found them. And a few other things that I didn't need. Like yarn, clothes, etc.

Finally the weather cleared up and we went to the beach. It was awesome. Do I have pictures? No. But there were sand bars that went on for miles, and miles. And I did get a touch too much sun.

But then all good things need to come to an end so I came home.... But it was  wonderful mini vacation.

Monday, June 19, 2017

Insurance Only Covers What It Says It Will (Usually)

We all purchase insurance for all sorts of things. We have car  insurance, home owners insurance, renters insurance, property insurance, flood insurance, and of course medical insurance in addition to many other policies.

Recently I have seen commercial on TV that offer insurance for homeowners to cover things like dishwashers, hot water heaters, air conditioners, etc. They show 'customers' asking their homeowners insurers to cover their broken AC units. After being turned down, the announcer offers home insurance policy to cover the appliances etc. I think - what a scam. I consider this to be the same as the extended warranties offered when you purchase items.)

But I digress (again), I have a real problem when people assume their health insurance will cover things that it does not - like 'wilderness therapy'. I get it. Your teen or other family member is headed for a crisis so you try to find some kind of therapy to help them. It turns out to be successful and you expect your health insurance company to pay for it. Did you bother to ask them if they would cover it before you sent your family member?

This is where I have a problem. How can you expect your insurance company to pay for something just because you think they should? I get you were very stressed and wanted to do the best for family member, but ask first...

I also understand that we want our insurance companies to pay for new therapies as they become available and have recognized benefits. This is a constant issue. Insurance companies must be forced to change with the times.

However there is a right way to do things if you want to have the coverage. Get a preapproval and then your insurance company will be on your side. Or work with them ahead of time to get their okay.

Sunday, June 18, 2017

The Combination Diagnosis

Presto, you were a healthy person, who in addition to going out for drinks and appetizers with friends on weekends, you also used to go to the gym, hike, bike, swim, blah, blah, blah. All sorts of activities. Then, the ball drops. Now you have cancer and another ailment which prevents you from doing much of everything.

You read about those 'other' cancer people, who took their athleticism to new heights after their cancer diagnosis. They climb not just mole hills, but Mounts Everest and Denali in the same month. They learn to stand on the big fat boards and pole their way across the Pacific. They boast about their return to health by stretching their athletic abilities 1000 fold. They walk 40 miles, or 39, or 60, to show their resolve to be healed and have their new normal. Their doctors and the rest of their medical team applaud their efforts to become and athletic over-achiever.

(Honestly, I find them a tad nauseating. I mean shouldn't you be happy doing everything you used to do once your hair grows back and you find some energy?)

During chemo, my doctors thought I was great because I would take a walk every day during treatment. Then my body decided to fall apart along the way.

Me, on the other hand, manage to walk to the end of the street and back on a good day. I try to fit in a little weaving and knitting as well.

Now I do go to the gym to help me along but it is a struggle. I only can go to the gym because I have the support of physical therapists and I was already exercising there before RA and fibromyalgia. I fight the urge to nap between making meals.... (what is wrong with a nap after breakfast anyway?)

Finally, I found someone else who feels the same way. Kelly Irvin, wrote for Cure Magazine and has Ovarian cancer and primary lateral sclerosis (PLS), said:

"My range of motion is severely limited. I recently graduated from a cane to a walker. A once active seven-day-a-week queen of aerobics, I now struggle to walk to the mailbox. How do the cancer ninjas in my boat reap the benefits of exercise that include reducing stress, keeping extra weight off or losing weight, maintaining muscle mass and fighting off the side effects of chemo such as fatigue and hypertension?"

Her advice includes;

"...we can exercise our joy muscles..."

"Find the activities that make you smile. Do them regularly. We can also find the spiritual exercise that calms our souls. For me, that means I can exercise my faith muscle—the one that offers me hope because I’m reminded that someday I’ll shed my scarred, limping body and dance the two-step with my heavenly Father. That muscle goes arm-in-arm with the empathy muscle. I exercise it when I pray for others who are paralyzed and receive cancer treatment in their wheelchairs. I need only look left or right to see others who exercise their courage muscles every day. Exercise comes in many forms. We don’t have to scale Mt. Everest or finish a triathlon to reap its benefits. We simply must get in the game—our game."

We cannot feel ashamed or upset that we cannot do what we used to do nor what we see others do. We must do what we can. I realize I cannot dream of climbing any mountains any more. But I can appreciate that I do the best I can. And that is all I can do. Our goals should be joy, empathy, and emotions.

Saturday, June 17, 2017

To Test or Not To Test

Once you are diagnosed with cancer, you have two key desires:

  • Get the damn thing out of me! 
  • Make Sure It Doesn't Come Back!
So you have surgery and they remove every thing they can. You might have to have more surgery to get those pesky clean margins. Then the give you nasty drugs for chemo and might zap you a few times as well with radiation as well. You might get some pills too. All sorts of fun and games thrown at you. 

The doctors swear to you that they have done everything possible to get the cancer out of  you.  So you go back to your oncologists and they tell you... see you in three months! You kind of freak out because you had been getting day to day care from your oncology team and they wanted to know about every fart and sniffle.

So you take a deep breath and wait three months. You go back to your oncologist and they tell you: 'your blood work looks fine, see you in another three months'. You take a really deep breath and ask shakily 'aren't there any more tests? How do you know there is no more cancer in me?' Your oncologist says 'there are no other tests that have been shown to be of any value in following your cancer.' 

This is a very real scenario. Although the patient may want more scans or tests to look for any teeny tiny cancer cooties, there may not be any else they can do to look for cancer for you. There is no evidence of your disease. They have no way of looking for anything now. 

They have to wait until you get some kind of symptom. This could be anything from a fever, swollen lymph nodes, or unusual pains. Then they can run more scans.

There are two reasons that doctors cannot provide more scans: 
  1. Scans may not have the resolution to show anything smaller than say 7mm. So they have to wait until something is large enough for them to seem. Scans can include high doses of radiation or contrast agents. You really do not want to have many of them.
  2. If you have bottomless pockets, you may be able to convince your doctor you will pay for them because your insurance may not cover scans unless you are symptomatic. 
An additional cost of scans is 'scanxiety'. This is the huge emotional toll on the patient at each scan. It is often better to stay off the emotional cancer roller coaster than to push your way back to the front of the line regularly.

I get it. I really do. I did recently get rid of a back doctor who didn't see a reason to rescan my back after 7 years of treatment even though I complained of different pains over the years. But I am very happy not to have any more cancer scans than the annual mammogram and annual neck check from my endocrinologist. I will speak up if I feel anything weird or think something is going on. (But my track record in noting bad things is awful - if I think there is something there isn't.)

I do not want to have any more scans. If there is a need to have more scans, that would freak me out just as much as a new cancer diagnosis. So test me less and I will be happy.I am happy to live in my cancer free la la land, than to be rediagnosed.

Thursday, June 15, 2017

Houston, We Have A Problem

I stole that line from the episode of Brother Vs. Brother that I am watching as I type. I cannot believe how much I have been sleeping. We had a heat wave here. (In Boston terms, that means 3 days in a row over 90 degrees. The rest of the world may snicker about that but we just don't get that much heat here.) And I am not used to it.

Sunday I wore myself out completely and got overheated and I had to rest with an ice pack on the back of my neck for an hour or so. Monday was another sweltering one. Tuesday was hot as well but I went to the beach for the morning. As I left the beach, I felt the waves of fatigue start. I had lunch and went home.

Yesterday I went to the gym and then met a friend for lunch and a little shopping. I ended up taking a 1.5 hour nap before dinner. My husband made dinner even but I went back to bed at 9 pm. I have been sleeping very well - especially since we put the air conditioner in our bedroom - but I still run out of 'oomph' too early in the day.

So, Houston, we have a problem. I need more 'oomph'. I hate running out of 'oomph' when there is more 'day' left. More 'day' means I have more things I need to do. Napping more is not a cure either....

Wednesday, June 14, 2017

More News I Don't Need

You know they tell us that evil cancer cells come out of the nasty cancer tumors and send them secretly through your body so that they show up later as unwanted metastases. These little cancer cooties (the professional term) are just nasty and unwanted and really want to kill us all in the end.

Now we have new research (because we always need more research) on how metastases occur. Or more correctly where and when the cancer cooties come from the tumors. Earlier research had thought that cancer cells came from the exterior of the cells and not very early.

"Even in remission, cancer looms. Former cancer patients and their doctors are always on alert for metastatic tumors. Now scientists at The Scripps Research Institute (TSRI) have discovered why some cancers may recur after years in remission.

The findings, published in the journal Cell Reports, show that invasive tumors can begin sending out tumor cells far earlier than previously thought. These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years.

Importantly, the scientists demonstrated that the escaping tumor cells reach the bloodstream by entering blood vessels deep within the dense tumor core, upending the long-held belief that metastatic cells come from a tumor's invasive borders."

I did not need to know this. I really did not need to know that these cells can escape long before the primary tumor is detected. 

"These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years."

I love that line. Your metastases could be sitting there, hiding, for years before and after your original diagnosis. Then you get to sit there and ponder 'did my chemo kill those cancer cooties? Or am I doomed already?' No, doomed is not a good word. But I can't think of a better one. 

In addition, now oncologists need rethink metastases...

"The research suggests a primary tumor does not have to be highly invasive to seed metastases. In fact, doctors may want to reconsider the time frame for the onset of cancer cell dissemination. While invasive tumors are more likely to manifest intravasation, the two processes – intravasation and invasion – appear to be independent of each other."

So your basic, run of the mill, cancer, could be sending out more cooties all the time. Nice.

I need to stop reading cancer research. I didn't need this.

Tuesday, June 13, 2017

Making Medical Decisions

We are given medical decisions all the time. When faced with them, there is the ever popular 'do nothing' option. The problem with that option is that it probably isn't the best option. If you are given a medical decision to make and you decide to ignore your options, you aren't doing yourself any favors. However, if you ask doctors you will probably find this to be very common.

The next option is to act and make a decision to do something, besides 'nothing'. This is usually the best option. But when making this decision, the criteria to look at are:
- benefits to you, the patient - longer life, less pain, etc
- benefits to your family and friends - you are still with them, you are less grumpy because you are in less pain, etc

Criteria to ignore:
- potential side effects of your choice. Most surgeries will leave a scar and some short term pain. Most medications carry some side effects. But you cannot know what can happen to you - how much short term pain, scars, or side effects - unless you try them.

The issue of cost can and does come up but then again you need to weigh it against the potential benefits. Many aid programs are available for those in need if you research it (ask your local social worker for assistance in this).

Then there is always the issue of deciding to doubt your decisions. No one can help you with this but you. You need to realize that you did think about it and made your decision so there is no reason to go back and rethink it unless you have some new information. And you cannot put your decision burden onto someone else. It needs to be your decision - its your body.

Okay, apparently I digress sometimes on stupid subjects but this one just annoys me to no end.

Sunday, June 11, 2017

Its Complicated

Personally, I do not consider myself to be a complicated person. However, alas, my health is very complicated. Yes. I am the kind of patient that forces doctors to consult with other doctors on my health before they see me or offer treatment options. They come to me with big sighs and long and repeated looks at my charts.

Nothing is simple for me.  I am ineligible for clinical trials because my health is too complicated so I am always kicked off the list. Medications are complicated. I am allergic to lots of things or they might interact with all my other medications.

If I go to physical therapy for anything, I can never do the standard exercises because they make my back, knee, hip, or something hurt.

I wish I was not complicated. I would be happy being very simple.

Friday, June 9, 2017

Finding Support Resources

In my personal experience the most important thing to do after a 'yucky' diagnosis (after going to the doctor and taking your meds) is to find support resources. I keep saying that the emotional part of you is just as important of the physical side of you and this is yet another example.

First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about which was another great resource.

Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found which is primarily for doctors but also for patients and I found which is more for patients. both provided me good information.

Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.

Finally, I found which had online support groups.... The last piece I needed.

So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.

Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)

It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.

Trust me your emotions are important....

Thursday, June 8, 2017


In the past few days I have learned of treatment breakthroughs for Multiple Myeloma and for Multiple Sclerosis - I have two friends which this will benefit. Both of them are very happy to learn about the progress.

The Multiple Myeloma (MM) news is that they have now found a treatment using immunotherapy which seems to put almost everyone into remission. MM is not curable but if patients can be put into long term remission with this new treatment, it looks like it is a step towards a cure. This news was announced at the ASCO conference last weekend.

"ASCO Perspective
“While it’s still early, these data are a strong sign that CAR T-cell therapy can send multiple myeloma into remission,” said ASCO Expert Michael S. Sabel, MD, FACS. “It’s rare to see such high response rates, especially for a hard-to-treat cancer. This serves as proof that immunotherapy and precision medicine research pays off. We hope that future research builds on this success in multiple myeloma and other cancers.”"

The Multiple Sclerosis (MS) news is that using nanoparticles. MS is not curable either but they have now found a way to alter a switch that regulates an immune cell. 

"“I discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed.

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact it plays a major role in tissue repair generally, turning on stem cells that are naturally occurring in the body, making it a natural regenerative medicine, but also plays a big part in repairing the brain when it’s been damaged.

“So I thought, this is fantastic. We can treat auto-immune disease, and we’ve got something to treat MS, which attacks both the brain and the spinal cord. So you have a double whammy that can stop and reverse the auto-immunity, and also repair the damage caused in the brain.”"

I think this news is great. Amazing even. I am glad to see such medical research. These two instances represent big steps towards a cure for those disease. But I am bummed that there is no research yet that will help me.

Wednesday, June 7, 2017

Decision Making

Back in junior high I think, we had a class where we were instructed for the next class to make a list of all the decisions we had made in that 24 hour period. I thought I did it right and came into class the next day with a list of three decisions I had made. I quickly learned how wrong I was.

Another student stood up with his list and it was long - it listed everything from deciding when to leave the classroom the day before, which way to turn in the hallway, whether to got his locker or not, etc.

How wrong was I? Phenomenally. And it was a big learning lesson for me as well.

We make decisions constantly. What to eat for breakfast, when to get out of bed, what to wear, when to shower, what to eat. We make most decisions fairly easily because they are habits or because they are fairly simple. Do I want eggs for breakfast or a yogurt and fruit?

But when we come to medical decisions, they can get very complicated. The first ones are usually easy - does that hurt enough and for long enough that I should call my doctor? Which doctor to call? Then they can quickly get complicated. Surgery? Post treatment options?

For cancer, you can throw in all those fun decisions - chemotherapy, radiation, immunotherapy, and more. Part of the decision making process can include not just whether to try some of the treatment options but how difficult will they be to survive them. Also what about your quality of life during treatment?

We constantly make decisions. Some are just harder than others. We just need to decide what is most important to us at that time and then make our decision.

Tuesday, June 6, 2017

Balancing Cancer Recurrence Fears

So I have been blogging about cancer recurrences and then I find a study that talks about how to cope with cancer recurrence fears. Basically what it comes down to is counselling, support and knowledge.

A study was done in Holland and followed several cancer patients and provided information and support on their cancer and recurrence issues. They compared two groups, one who received access to normal psychosocial support. The other group received blended cognitive therapy consisting of:
  • five individual, 1-hour, face-to-face counseling sessions
  • three 15-minute Internet chat consultations
  • access to an informational website
It doesn't sound like a lot of support but after three months:

"Overall, about 33% of people who received blended cognitive behavior therapy had their fear of recurrence ease significantly, while none of the people who received usual care had their fear ease significantly."

So if you are concerned about recurrence don't hide in your house, go out and get some support. I think support doesn't always need to come from professionals. Sometimes just talking to others with your type of cancer is very supportive in itself. If you are very concerned you need to get some professional counseling.

All this goes back to my point that your emotional well being is just as important as your physical one. 

Sunday, June 4, 2017

More on Olivia

I am beginning to think I am her fan or something as this is my third post about her.... but once again I am blogging about Olivia Newton John and her cancer recurrence. I have another problem with her and her recurrence. This is it in her statement about what her plans are for recurrence:

"I decided on my direction of therapies after consultation with my doctors and natural therapists..."
Her plan is to focus on radiation and natural therapies.... I don't have a problem with natural therapies but I do have a problem with their use without additional medical therapies.

I used to work with a woman who was diagnosed with breast cancer and after her surgeries she decided to use graviola as her treatment, skipping other treatment options. She had a recurrence a couple of years later.....

Honestly after what I have been through I have a healthy respect for Western medicine, Asian medicine, and other modalities such as yoga, acupuncture, reiki, and more. I would not just natural treatments because I think they need to be combined with other treatments. If natural remedies solved everything, other medicines would never have needed to be developed.

I also realize its not my body in question but I can still disagree with her treatment plans.

Saturday, June 3, 2017

Going Back To That Recurrence Thing

With cancer, this is what we all want to know. Will it come back?

The other day, I blogged about cancer recurrences and being on the hook. Of course with Olivia Newton John's twenty five year later cancer recurrence, the media is now full of cancer recurrence information.

Before I start, I need to state that anyone who says they have cancer and then say they are cured after treatment are idiots. You are not cured after a cancer diagnosis, you only can exhibit 'no evidence of disease' or NED. While there have been many cancer treatment advances in recent years, there is still no cure.  Why do you think you need to keep going back to your surgeon or oncologist? They want to keep monitoring you....

So anyway, the media is now giving us lots more details on cancer treatments and recurrences. This will continue until the next big news flash that will displace it. There is a nice long article on cancer and recurrence on CBS now where they interview Dr Deanna Attai of UCLA and Dr Andrews at Hofstra Norwell School of Medicine.

""I would say breast cancer – a lot of these cancers – have become more of a chronic illness than a terminal illness. A patient may do well with bone metastasis. They may need ongoing treatment for the next five to 10 years, but it doesn't mean it's a terminal sentence. With radiation, thankfully, our techniques and technologies have improved. It all depends on how big the area is and the critical structures that have been affected," said Andrews....

Attai said a recurrence diagnosis can be very emotional for a woman.

"It's different for every patient so I do not want to generalize, but some common themes I see are that many women never truly get over having breast cancer. It's always something that's with them. Many women are changed by their experience, but the further out you get, the breast cancer takes more of a back seat. And we tell them to go back and live your life. A recurrence often brings back all the emotions and then some from when they were first diagnosed. And especially if it comes back somewhere else in the body," said Attai.

She said the first question is always, "How long do I have to live?"

Once the cancer has shown that it's gotten outside of the breast to other parts of body, she said there's the potential of dying from the disease, but she tells patients that tests can help identify what's going on and they can discuss treatment options and their effectiveness.

"We stress that we do have a lot of newer agents and many women are certainly living longer. But there's no question that women living with metastatic disease, at least right now, we can't say we can cure patients. We're much better at keeping the disease under control, gaining a remission now, but at this time, metastatic breast cancer is considered incurable. I think we will get to the point with newer, targeted agents, to talk about long term remission," Attai said."

Right now is a good time to be a cancer patient. There are lots of new treatments coming out. I have several friends who have been stage IV with breast cancer for more than a decade. Their quality of life is pretty damn good. 

It doesn't matter how long ago you have had cancer, you need to remember that it still could return. I think you are at a higher risk of getting other cancers as well. Your body may be a temple but it could also have cooties hiding in the corners.

We need to remember we need to be alert to changes in our bodies for changes to talk to our doctors. Even if you call your doctor in a total panic because you could swear you have a new tumor that is going to kill you within a year (yes, I have done that and my doctors did not tell me I was crazy). Doctors do realize that patients are the ones who notice changes first so be sure to speak up.

In the meantime, don't go crazy, just stay alert.

Friday, June 2, 2017

Weird Test Results

We all get these standard medical tests - like a colonoscopy.... I get regular chest x-rays... Why? Because back in the dark ages of my thryoid cancer, they saw a 'thingy' in my lungs. It was a benign thingy but they wanted annual chest x-rays to check on it to make sure it didn't do anything.

So after over 25 years of annual chest x-rays for the thingy, I was told they no longer needed annual chest x-rays for thingy's, they would wait until any symptoms occurred. Then, as luck would have it, I was put on methotrexate for my rheumatoid. As there is a possibility of lung problems caused by methotrexate, I was put back on 'sort of' annual chest x-rays again.

This week I saw my rheumatologist and she realized I hadn't had an annual chest x-ray for at least two years so she said it was time. So I went.

Yesterday the results showed up with a weird comment.... I hate weird little comments from radiologists. I sent a message to my rheumatologist for an explanation. I really hope its a nothing. I don't believe it is related to the original 'thingy' but I do want a definition.

The problem is that once you have cancer, with every weird test result you start to go back on that really bad cancer roller coaster with all the 'what if's' floating through your brain. I just hope I get an answer soon. Dr Google gave me lots of really bad reasons for the cause of this weird comment so I really want to know asap. And I need to remember to avoid Dr Google.

Thursday, June 1, 2017

How Long Are You On the 'Hook' For A Recurrence?

After cancer, we always wonder 'will it come back?' Actually, we don't just wonder, we obsess over this. For a long time, we think every little owie is probably cancer. We can only get our life back on the rails when we learn to cope with this. But still then every so often we still freak ourselves out about something. And life goes on.

But post cancer, every so often our doctors tell us something we don't like and we go back on that cancer roller coaster. Time goes on. Years start to roll by.... We assume we are good because its been a decade or two....

Now I must ask the question 'how long are you on the 'hook' for a cancer recurrence'?

I know that research and the past has shown that thyroid cancer has been known to recur 30 or 40 years later.... How fun. Breast cancer I always kind of thought 15 years or so you are good.

The news told us this week that Olivia Newton John has had a breast cancer recurrence. She thought she had back pain but instead it was cancer metastases. I made a point to look up how long ago was her original diagnosis. That was in 1992. You can do the math. 25 years ago.

Damn.... So my ten years out doesn't mean that much. Damn, damn, damn.....

Wednesday, May 31, 2017

Once Upon A Time, I Was A Healthy Person

I have many friends who, after cancer, get back to their old lives for the most part. I'm not talking about that 'new normal' bull, but just doing normal things like going back to work, taking part in all their family activities and all sorts of regular, every day life things.

Me, I did not get to go back to my regular life after breast cancer. My body had other plans for me. It decided it was time to fall apart.

After breast cancer, I got gall stones and had my gallbladder out six months after radiation ended. That winter I slipped on the ice, landed on my left hand and started all my lymphedema crap.

The following fall my back started hurting. When I realized I was taking OTC pain meds every day, I went to the doctor. I ended up being diagnosed with degenerating disks among other things. Later I sprained my ankle badly that included bone chips. I also hurt my right knee, again - previously injured skiing in 2001.

That went on fine until three years later when I was diagnosed with rheumatoid arthritis and fibromyalgia which is a whole barrel of fun. In 2015, I fell in my backyard and managed to tear my ACL in my left knee.

What else? I don't know. I have had basic dental stuff, possible recurrence with thyroid cancer that turned out to be nothing, and I can't remember anything. I have been to PT probably five times for different ailments.

So, I am not a healthy person post cancer. I have a very dilapidated body post two cancers. I must be 'healthy' due to all the medications I take and the doctor appointments that I have. In the first five months of this year, I have had 27 appointments with doctors and dentists.

I'm still here. I may not be the healthy person I once was. But I am here.

Monday, May 29, 2017

Is Moving On After Cancer A Myth?

I am approaching my ten year anniversary of the ten year mark after my breast cancer diagnosis. Am I supposed to celebrate? I think so but I am not sure how much of a celebration it is. It doesn't mean I can say it is gone for good. It just means that in the ten years since I was diagnosed with breast cancer and I am still here.

Now I do know that is a good thing. But am I supposed to celebrate? But I don't feel like celebrating. I am not sure that I should celebrate. I certainly won't be having a party.

The last ten years have been a growing time for me emotionally (and for my waistline). I have had many new experiences that I would never have had without breast cancer. Some I can appreciate - like learning to fly fish or making lots of new friends - but some not so much - my first CT scan, chemotherapy....

I have met many wonderful people during these past ten years. However, I have lost many of these new friends as well to cancer. I have also held hands, physically and emotionally, with many people who I never would have met, to help them and to help me coping with cancer. Some of that is good, but some of that - I still miss many friends.

My breast cancer diagnosis was not my first dealings with cancer. I had been diagnosed with thyroid cancer twenty five years and some months earlier.

It took me a long time to get my life back together after that diagnosis but I was never the same. Actually I don't really know. I was diagnosed at the age of 19 while in college so was never really an adult on my own without cancer. I don't know if I would be different if I had never had cancer because I never had the opportunity. It took me so long to deal with that cancer diagnosis, I don't think I 'grew' that much.

Since I can't tell if I had grown emotionally after that cancer diagnosis because I have no comparison. And am I any less of a person than I would have been? How much did cancer change me? I have no idea. Again, I have no comparison on that how can I tell how much my cancer diagnosis changed me and my life again?

I go back to my question - is moving on after cancer a myth? I don't know. I don't know how much I have moved on  because I can't tell how much I changed in the beginning.

All I do know is that once someone says 'you have cancer' you are changed. Your focus on life is very different. You question what is normal to every one else - life insurance in case anything happens to your children (if you can still have children), or changing jobs and getting new health insurance (with a pre-existing condition). Or planning for the future? Why should I save for retirement if it looks like I probably won't be here for it?

Personally I believe that anyone who says you can move on after cancer, has never had cancer. They are the same people who came up with the soldier/battle/warrior/s-word stuff. But I don't have the comparison so I can never be sure.

Sunday, May 28, 2017


I realize I haven't been blogging much for the past month or so. We went away for a weekend, we are on our second set of houseguests. This one came with a dog who freaked out one of our cats (who should have stood his ground and growled at the dog and he would have hid because he is really scared of cats).

I have also been dealing with lots of fatigue. What is fatigue? When you need 12 hours of sleep each day and then make it through. I also keep getting myself in places where all of a sudden I am so tired I can't function.

An example is this past Thursday. I got up and went to the grocery store and library in the morning. I didn't carry in all the groceries - only the perishables. I relaxed for a couple of hours and went to my knitting group. On the way home I stopped at a garden center for more vegetable plants. All of a sudden I was so exhausted it was almost too much to walk to my car and drive home. Then I had to lie down for about two hours just to recover to make dinner.

There is one thing of needing sleep. There is another that is too tired to function and not needing sleep. Just needing down time. Thursday afternoon I couldn't have slept but I just needed to be off my feet, watching bad tv in bed. (What is bad tv? TV which provides no redeeming qualities and is barely entertaining.)

I have had almost two weeks without doctor appointments - I haven't had one since the 10th. But this coming week I have the dentist, rheumatologist and someone else who I can't remember. And I need to get my bloodwork done on Tuesday.

I do not have that busy a schedule and sometimes even get together with friends. I spend a lot of time at home weaving on my loom and knitting. I also get to the library regularly....

Just a lot of distractions in my life. The benefit is the distract me from the state of my health. I am and will always be the most unhealthy person in my family. I have more health problems than my parents and they are in their 80s. My siblings are disgustingly healthy as well. My husband is definitely healthier than me too.

But all these distractions do lead to a basically happy life these days. I think that is the most important thing.

Thursday, May 25, 2017

What To Do When A Family Member Has Cancer

Its different when a friend has cancer than when its a family member. When you live in the same house as someone with cancer, you need to be a bit more proactive and protective than when its not someone in the same house.

For the person with cancer, they are probably feeling a bit stressed, to say the least. They may isolate themselves or they may act in an uncharacteristic manner - drinking more, eating more or less, etc. Their whole being is probably focused on their diagnosis and how they feel, which may or may not be very well. They are contemplating their odds, their upcoming treatment, etc.

This is not a time to make undue stress on them. They need their time to regain some emotional equilibrium. They do not need reminders to take their medications, eat food, or interact with people. You can ask once but do not nag or stress them. They are not in a good place.

The most important things that they need right now is support. They may need trips to the doctor. They may want help finding more research on their health.

They do not need aggravation. Trust me. I've been there.

Family relations can be complicated. This is not a time to complicate them further. This is a time to uncomplicate them so quit all the drama.