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.

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.

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.

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? 

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.

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. 

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.