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.