Monday, October 24, 2016

Ignoring Pinktober

I have been doing a pretty good job of ignoring Pinktober this year. I know I went to a breast cancer friends meet-up recently and everyone (but me because I forgot to order one) wore their pink shirt for the event. I don't consider that a Pinktober event because it doesn't matter what time of year it is that we get together. The get together is the most important part.

I have seen pink ribbons everywhere. I went shopping at a mall this weekend where every store in it had a pink ribbon on its front to promote something about Pinktober. I can't even remember what it said because I didn't really stop to read one. I know there are a lot of other pinkification events but I have put my blinders on and ignored them.

I am okay with this. I don't need pinkification in my life. I can live with it. I think the worst of it has subsided due to the backlash in recent years. Some women like wearing pink and don't really care what month it is that they wear pink. I certainly don't need a pink ribbon on everything.

Some people really embrace these 'cancer' months. How many men grow a beard in whatever month it is that is for prostate cancer awareness? (I had to look that up because I couldn't remember what cancer it was.) Or is it an excuse not to shave for a month? I don't know but they do it because they want to.

I think if we all wear our blinders as it suits each of us, we will do fine. For example, if you put your election blinders on you will make it through to November 9 when we will know who our next president is. You might be less stressed if you do.

I will survive Pinktober as I plan Halloween at our house. I have a hidden candy stash. I have to talk to our new neighbors about our willingness to participate in trick-or-treating. And I will wear pink when I want.

Sunday, October 23, 2016

The Hospital Space for Relaxation

As you go through cancer treatment you need a place to sit quietly with friends and family. Every hospital has a space where families of patients can come together and relax with the hospital patient. There are little areas tucked away. Every hospital has one.

At the hospital I go to there is a little quiet space tucked away down by the chemotherapy infusion rooms which is comfortable and has a small lending library for patients and their family members.

At Children's Hospital in Boston, they have the Prouty Gardens. It has been there for sixty years and was donated for that specific purpose. Mrs. Prouty was told by the then hospital president, that it would stay until 'all children were well'. She then hired professionals to design and create the garden using her own money. On a plaque in the garden it says: “Because of Mrs. Prouty’s vision, this garden will exist as long as Children’s Hospital has patients, families, and staff to enjoy it’’. The value of this garden to patients and their families can not be measured.

Many families have spent time there with their children in their last days. They have even spread the ashes of their children there and have gone back to remember then there. Its a cemetery in some respects, even if its use as one was not intentional. Its a place of remembrance.

Now Children's Hospital is going to dig up Prouty Garden for the purpose of expansion. The claim is they need the space for more private rooms, a neonatal intensive care unit, and a heart center. Big business interests have taken over the wishes and desires of patients, former patients, deceased patients, and their family members.

On one level I can understand the need for the hospital to expand and add more space to treat more patients. All businesses run into the need to expand. They find more space where they could then expand. Children's Hospital has multiple campuses where they could expand elsewhere.

The idea of taking a space which has been used for contemplation and remembrance for so many for so long to build a huge building is very unjust. This whole idea just upsets me. The hospital went back on their word that has stood for decades. The only hope is that a judge will step in and rule to protect the garden.

Saturday, October 22, 2016

Its How You Get Up Again

After cancer hits you, you cope and move on. But I think the most important part is how you cope. Many people are familiar with Scott Hamilton, the Olympic medal winning figure skater. But I am not sure that everyone knows about his cancer diagnoses. In addition to testicular cancer in 1989, he has also been diagnoses with brain tumors, several times. And he has also developed that awesome resource ChemoCare which provides a huge amount of information on chemotherapy regimens, including the all time favorite, side effects. His last diagnosis was last spring.

He spoke about this recently with People Magazine, that ever popular medical reference. I found the video very interesting and provided some thought provoking insights. Watch it all the way to the end (its less than 3 minutes), and then think for a bit.

A cancer diagnosis is a big fall in your life. Actually its not a fall, its more like it threw you down three flights of stairs. But you have to regroup and go on with your life.  You still need to go to the grocery store, have surgery, drive your children to school, do the laundry, deal with surgical drains, mop the kitchen floor, dust the living room, make the beds, hang out with friends, and go to more damn doctor appointments that you ever thought possible. And deal with this huge emotional wave of medical crap.

Scott Hamilton has had to deal with this four times now and he came up with this advice.

Its not what happens when you fall its how you handle it. The remember to smile like Kristi Yamaguchi as you do it.

Friday, October 21, 2016

In My Inbox

I get so many emails every day from some of the many websites where I am registered. Most of them are health related (becuase I am still waiting for that cure). Usually I can hit delete on many of them because they don't appeal to me for some reason or another. Then I move on to the rest of my day (after the USA today crossword puzzle, checking Facebook, and my blog).

In my inbox this morning was a startling, shocking, upsetting email. Its title was: "Is having bacon good for fibromyalgia?". First of all let me say that I really hate emails that start off with a question. They are just click bait. And I hate that.

Next, bacon is a favorite food. I know its not healthy but if I can have bacon I will. I don't like other breakfast meats much so its bacon or nothing. And if bacon can be incorporated into dinner, that is just fine with me. (A favorite is cook a couple of pieces of bacon - one per person - in a fry pan. As the bacon is almost done place scallops on top. When the bacon is done, the scallops should be too. Serve scallops with bacon crumbled on top.) I have bacon maybe every few weeks at the very most.

Don't tempt with bacon in click bait. Its just wrong. But I read the email and found out that bacon isn't that good for fibromyalgia.

"Bacon is highly acidic and the fatty acids it contains can easily aggravate your pain symptoms. Having a lot of pork can result in massive inflammation of your joints. Just imagine eating bacon for breakfast and having to spend the rest of the week in pain, it can really affect your lifestyle."

That is just wrong. Bacon is good for everything as far as I am concerned.

"It is a big NO to take bacon although some suggest that having bacon in moderation is fine. If you suffer from any muscle and joint pain from fibromyalgia, it is recommended that you stop the bacon intake. If it is a tough task for you to cut your bacon completely, a big tip from us is to replace your bacon with turkey bacon which has just half the calories of pork bacon. There are some brands that have no saturated fats. Pick those."

No. Way. Some days breathing causes pain so I can't see that bacon can cause any worse pain. And turkey bacon is full of sodium, more than pork bacon so its really not better for you anyway.

But I didn't know pork could cause inflammation and will check into that part. And I will figure out how to incorporate bacon into our menu this weekend.

Thursday, October 20, 2016

An App for Lymphedema Self Care

I am on the fence on this one. At NYU, a bunch of really smart people have developed a prototype of an app for self-care for lymphedema. They have tried it on about 20 people. They realize that they used their app on patients who are highly educated and tech savvy. A great idea. Right?

Not. They realize their audience is skewed in one direction. But I think I could be put in that group myself of well educated and tech savvy but I am not going to jump on my phone or laptop at every twinge. Not happening.

I think I blogged about the idea of 'cool' apps for anyone over 30. Not so great. I like the idea of helping with self-care for patients but not necessarily an app. I think we need a new idea for this. The internet and technology do not solve everything.

Wednesday, October 19, 2016

I Don't Heal

Part of one of the many 'joys' in my life is that my body heals very slowly. When you have RA or other auto-immune disease your treatment often includes a immune suppressor, such as Methotrexate. I get a weekly injection of it (courtesy of my husband). It suppresses my immune system so am very vulnerable to germs and heal slowly. A cold doesn't go away in a few days, it can take a few weeks and can result in ear infections and other 'fun' ailments.

A few examples: I have this stupid ass wart on my foot that the doctor froze off September 1. Of course it turned into a big blister but is it healed yet? No. Its only 49 days later and its not healed. It still has a scab covering an open area on the top of my foot. I was supposed to have a follow up today but I cancelled it because there is no point. 49 days, that would be 7 weeks in normal speak, and I am not healed.

I had a periodontal deep cleaning almost three weeks ago. I went for a follow up last week and it was barely healed. And I had an area that was starting to cause new problems that the dentist had to lean up.

My husband had a cold last week which he nicely shared with me. I am still sick. I have been skipping my methotrexate shots in hope that I will heal faster but it doesn't seem to have made a difference.

This also can make a difference with any 'fun' medical 'misadventure'. Recovery can be slow.

Today I feel like crap still. I really would like to go to the gym and burn off some flab after traveling and eating badly for two weeks. But I am still not sure. I feel okay for a bit and then not as well. I debate - do I stay in bed or do I pretend I am healthy and go to the gym? 

Tuesday, October 18, 2016

Finally Back Home

I have spent most of the past two weeks travelling. First it was a needed break with my husband. Then it was a road trip to meet some people who were very important to me but I had never met. I am also now getting over a cold. My husband shared his cold with me last week and I have had it since. To be fair he has been sick for a week as well.

While it may not have been the best idea to over do things for several days in the row, emotionally I needed it.

Anyway, now I am back home and relaxing instead of getting up to go somewhere. I am way behind on rest and sleep. My fatigue level is too high. Basically I need to nap for the next few days to catch up.

However do I regret all my travelling? Certainly not. It was a welcome break from reality. Everyone needs to break up their regular life and do something different. Especially people who are not healthy and feel stuck in a rut because of their health limitations.

Now I do feel refreshed and ready to get back to my regular life (and finally put away my suitcase). And get back to doctor appointments.

I am ready to catch up on so many things - my blog, my doctor appointments, and more.

Saturday, October 15, 2016

On The Road Again

This weekend I am on the road again. It is a real road trip. I drove with a friend (well she drove all so far) about 840 miles to the middle of Indiana from Massachusetts. We spent a night at my brother's and two nights in a hotel and then we will go back to my brother's and home. A road trip without the Thelma and Louise business.

Why am I on a road trip like this when I am among the least health people in the country? Because:
  1. I wanted to
  2. Its a great change to do something completely different
  3. I am meeting some people I have known online since 2007 but have never met in person. 
Reason number 3 is the most important to me. When I was diagnosed with breast cancer, I went online for support and to find out information about my latest health debacle. I met all these wonderful women who were also coping with their own breast cancer demons. They were amazingly helpful and supportive and got me through some tough times.

But I never met them in person and now here I am. I will get to meet some of the people who were very important to me and understood what I was going through like no one else could. 

Thursday, October 13, 2016

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

Tuesday, October 11, 2016

Back and Forth

Adding to yesterday's post on the evil voice, I can go weeks, even a few months, and feel that I am doing okay and I am in status quo of a semi-healthy state. Then I go over to the other side and think my body has let me down and I have some new ailment. Or an ailment has decided to act up again.

Its just unfair. Seriously.

But I digress. I felt well for about a week. By well, I mean sort of normal. Then we came home and my back started killing me. And my knee hurts. And my neck hurts. Then I am sure next week at least for a few days, I will feel fine.

The hard part is the balancing. Every day I wake up optimistic and then I do something like try to move, or get up to head for the bathroom. Some days I can manage the basics without saying 'ooch, ouch' constantly. Some days, people start to look at me funny when I start talking to myself 'ooch, ouch, ooch, ouch, ooch, ouch....'  You get it.

So some days its good. Some days its not. I never know. I can have big plans for the day and then my body says 'no you aren't going anywhere'. I can't count the number of times I have changed plans simply because I can't go anywhere.

Back and forth. Every day. Its a crap shoot. Back and forth.

Monday, October 10, 2016

That little evil voice

After years of medical crap behind me, I still get those nasty niggling thoughts that something new might actually be wrong with me. What is the reason for that 'new' problem? Is it cancer again? No I can't get cancer again. I have had my share already thanks. My body can't take much more please. 

I admit to having some not so good thoughts about pains in the past few days that are leading me to making new appointments with a couple of doctors. This does not make me happy. But sometimes I have to just calm down that little evil voice that causes me so much stress. But since its a Monday morning I have to wait a bit to call in to make appointments because everyone else in the world is also calling in because they get sick on the weekend too.

Anyway my health management basically consists of quieting the little evil voice whenever it speaks up. Is there special health insurance for that? There should be.

Sunday, October 9, 2016

Changing Your Wardrobe For An Ailment

I couldn't sleep last night (again - thanks to back pain) and started wondering why women with breast cancer instantly start wearing pink and accessorizing with all things pink upon their diagnosis? Why do they feel the need to do this? I just don't understand. I admit when I was diagnosed with breast cancer I did go out and purchase one pink breast cancer t-shirt which I wore to chemo once and then donated it. I was also given breast cancer t-shirts by family and friends after they participated in an Avon walk. I never wore them either.

What if your ailment didn't have a 'pretty colored' ribbon, would start wearing that color? If you were diagnosed with narcolepsy, for example, would you start wearing black and accessorize with black ribbons? Or if you had ADHD would you wear orange and orange ribbons? Probably not.

With my medical history I should then wear purple (thyroid cancer and fibromyalgia), blue and purple (rheumatoid arthritis), light blue (lymphedema), and pink (breast cancer). I am probably forgetting something but that's enough of a rainbow for now. (See the whole list here.)

Pink has always been one of my favorite colors. I have always worn a lot of pink clothes. But now I actually stay away from pink as I don't want to be identified as a breast cancer person by the clothes I wear. So in some ways I am changing my wardrobe away from pink in a cringing way.

Call it backlash.

Saturday, October 8, 2016

I took a break from reality

We just spent six days in northern Maine where there is sketchy phone service and minimal wifi - if at all. I kept my phone on airplane mode so I wouldn't kill the battery with it searching for a signal. Because there weren't any. We couldn't phone home if we wanted to.

Actually it was very nice. A break from everything. I didn't blog which was very minor. But I also didn't worry about medical issues. At all. I pretended I was healthy and did what I could.

We had fun. It was peak foliage. We took a boat tour on Moosehead Lake. We drove 10 miles down a dirt road to look at ruins of a plane crash - which was eerie and creepy to say the least. But definitely worth it. We helped the local economy by shopping and dining out.

It was a wonderful break from all things medical. I didn't have a doctor appointment. I didn't concern myself with anything. This week I have two medical appointments to make up for the break.

I highly recommend a week of unplugging and disconnecting for everyone. But now I have to catch up on so many things.

Sunday, October 2, 2016

I Have Learned

Unfortunately because of my health I have learned a lot about dealing with doctors and ailments. Its the one thing I can still do.

Someone I know has been dealing with a significant medical issue and now has gotten some more news which could impact the rest of his life permanently. As someone who has dealt with multiple medical issues I could relate to his concerns.

I shared what I would have done based on my experiences with ailments. I guess I have learned a lot in the past ten years or so of medical disasters. This is what I have learned:

Step one: education. Find out as much as you can about the body part with the problem. Research the crap out of it. I would start with any medical organization for doctors who deal with this problem. Then I would find out as much as I could about the ailment. And then the body part with the problem - what does it do, how does it work, and what is the impact of a not so good body part - can you live without it or if its damaged. What is the long term impact of it. Take the time to learn all you can about the changes in your health and how your body can deal with it.

Step two: ask questions. Write down all the questions you have and then get someone to go to the doctor appointments with you so you can the answers you need. Their job is to make sure you get all the information you want. This is always a good idea with a major medical issue. Keep learning, even attempt to stay up with the latest research.

Step three: options. Once you get the information so you have a better idea of what you are facing, maybe get a second opinion. Take your time and think about options. Digest what you have learned and figure out what you want to do. Don't assume the first doctor is correct.

I hate dealing with doctors and stuff. But I guess I have learned enough that I can share with others on what has worked with me. I just wish I was healthy.

Saturday, October 1, 2016

I Survived the Week.

I blogged that this was going to be an awful week. It was. My biggest problem is that I was tired all week. I didn't get enough rest and felt exhausted all week. Every time I wanted to take a nap, I couldn't because I had to go somewhere or someone was going to be here.

Finally last night I got into bed around 8 or so to read. I didn't read very long before I fell asleep. I woke up in the middle of the night and fell back to sleep pretty quick. I woke up at 830. That means close to 12 hours of sleep. I needed that sleep.

I feel much better today.

Its amazing how important sleep can be. If you do not get enough rest your body is running on its last legs. Its can be as important as getting food and water. Most people can get by on a few hours of sleep for a few nights. But me, I need my eight hours or more of sleep. Now ten hours is better for me. And I need to be able to spend some time during the day taking it easy.

But now we are on to another week where I do not have anywhere as crazy a schedule as last week. Sleep and rest will be high on the agenda. I will pencil in some naps as well.

I wish I could go back to the days where I could go from one activity to another. Those days are long gone. I just have to get used to that part.