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.