Thursday, March 19, 2015

Look Good, Feel Better

Superman and I attended the St. Patrick's Day parade on Tuesday.  It was an awesome afternoon with some good healing sun time.  I did struggle powering through though.  1:00pm was the parade kick-off and 1:00 is also my NAPTIME!!  I got some coffee and made it through though.  It was a little de-moralizing however, when I stopped at the store afterwards to pick up a few things.  I had to purchase a single banana and eat and rest in their cafe area for a little bit before going forward with my errands.  I hate being so weak and tired.  Don't got time for that!
Parade photo

Last year's parade photo

I was looking at last year's photo and thought to myself, that was pre-cancer days.  And then I thought, no I probably had cancer then too.  Just hadn't noticed anything yet.  In fact, the breast cancer book that I'm currently reading shocked me with this sentence the other day: "Cancer cells are often present ten years before a mass is finally detectable, having grown to a size one centimeter in diameter and consisting of one billion cells."  That's craaaaazy.

Speaking of the book I'm reading, I put it away for a little bit because it really upset me.  The author has REALLY good things to say and a fantastic message.  Cancer recovery isn't just about what you do while you're at the hospital.  Its how you take care of yourself during all the rest of the time.  Exercise.  Food.  Attitude.  Spirituality.  Etc.  And this is very very very important.  However, he also has a viewpoint of not letting yourself be pushed around by your doctors and making sure you are informed and make your own decisions.  And that's also a good message, but I'm also not an idiot.  Of course, I'm going to be making my own decisions and not let a doctor push me into anything I don't want to do.  But I am just flat out offended that this author, and I'm completely paraphrasing, he explains and backs up his views with good points, but I'm offended that he is suggesting that a doctor wouldn't have the best intentions for their patients.   He also expressed an opinion that chemotherapy is rarely a good option for a breast cancer patients, and that going with the least invasive options is the way to go.  And while he has written a book and has the right to express this opinion, it had a VERY negative affect on me for about 12 hours.  I went from 100% confidence in my amazing women-doctor-team, down to 99%.  And that 1% of doubt was more poisonous to me than chemotherapy will ever be.  It was bad.  bad bad bad.

I think it made me physically ill.  I woke up on Wednesday morning feeling AWFUL.  I knew something was definitely not right.  No fever, whew!  But I was having bathroom issues, chills, my stomach was upset, and a killer headache.  I was scheduled to get another Zoladex shot at 10am.  At 9:30, Superman called and told them what I was experiencing and the nurse talked to me.  Yes, something was amiss.  Especially with the chills, I had probably caught something.  She was not terribly concerned and told me to call if any other symptoms showed up and they rescheduled my shot for Friday so I could stay in bed and rest.  Which I did the rest of the morning.  Now whether it was the 1% doubt that made me physically ill, or if it was because I was at the parade yesterday around tons of people (definitely got breathed on by a bunch of drunk people that nearly knocked me over on their barhop journey), I will not know.   But I am glad that today I feel SO MUCH BETTER. And that the stupid doubt is out of my head.  I'm back in 100% with my amazing doctors and know for certainty that I am doing the right thing.  They have recommended my treatment plan based on scientific data and are using a treatment that has been successful for millions of women.  They've made their recommendation for chemotherapy also based on the fact that I'm young and strong and was perfectly healthy before this all started.  As much as I hate it and its effect on my body, IT IS THE RIGHT THING TO DO.  And I apologize to myself, and my Superman (more specifically, taking it out on him) for ever doubting it and it will never happen again.  I'm in this 100%.

I was feeling better by evening time, and I was scheduled to attend a "Look Good Feel Better" event at the hospital.  It turned out to be just myself and one other woman, so its a good thing I didn't stay home.  This program is AMAZING.  Basically, its about making women feel better about their appearance despite the effects of treatment on their skin and their looks in general.  Beauty products are donated and given to cancer patients for free.  I came home with a bag of products, everything I would EVER need, and I'm estimating the value was about $200.  I also learned how to tie scarves!  I was concerned about drawing eyebrows when those fall out, and I learned how to do that.  It was just awesome.  The person who led the workshop was a guy named Jim.  He was wonderful.  Very upbeat and personable.  He was also technologically challenged and was given a desktop computer from the hospital staff to use for his videos.  I got to help him use that, and it was cute.  It made me feel useful.  :)  And, in conversation about my work, I found out that he is a KCK graduate!  Harmon High School!  He attended Argentine Middle School too.  YEAY!!!  And now he is out healing others with his volunteer work.  (I think its volunteer work, not sure.)  I'm kicking myself for not asking if he was a member of band or orchestra though.  FAIL!  If I ever see him again, I will be asking him.

I've been receiving lots of cards in the mail from various friends and family.  Its so uplifting to know that people are thinking of me.  I've got some major thank you notes to write to people in general for being just amazing.  I received a cute elephant in the mail (that sings!) from my aunt.  Its taken its place on the mantel, looking over the family with his strength, serenity, and wisdom.

I'd like to end this post with a video for my husband.  I don't know what I would do without him.  I am the luckiest woman to have him in my court through all of this.


  1. I think there are a few things to consider...

    In my experience, I had doctors that couldn't be bothered to take my concerns and symptoms seriously. I was literally told things like "You aren't skinny enough to have endometriosis" "You just don't handle pain well because you are female" "The pain is in your head, you just want attention and I have patients that are legitimately sick" "The pain is in your head, you're just depressed" and "It must be a STD and you're just in denial." When you get that for over TWENTY years, I can see where he is coming from. I liken medicine to any career...many go into it for the right reasons but some become bitter, corrupted, or changed in a less than positive way. However, I think MOST doctors legitimately want to help their patients and do so to the best of their ability.

    I am a huge advocate of patients researching on their own and that the treatment should be a mutual decision, not just follow doctor's advice. For the flu, sure, but a major I have lost that trust but, I do not feel most doctors do something contrary to what they think is best. Sometimes they are wrong, but something people often forget is that medicine is not an exact science; it is always evolving and changing. What was thought was the best treatment ten years ago is different today. I have seen a lot of patients blame the doctor when new research comes out. I've also seen them not fully disclose their symptoms, sometimes because they didn't realize it was related either, and then blame the doctor for not magically knowing and addressing those symptoms. A doctor must work with what you give them, not assume. The more a patient understands, the better s/he can work with the doctor to accurately and efficiently deal with symptoms and disease.

    What I look for in a doctor is honesty rather than pushing a treatment, compassion and how they will respond if it doesn't work, and are they willing to admit and realize what they don't know. If your doctor is like this, I feel if your situation got to a point she couldn't handle, she would help you find who could. It is upsetting because we want doctors to be the experts that are always right, but it's just like anything else in life; you have to make the best choice for you at that moment. Never regret making what you felt was the best decision.

    What I would do, look at your treatment...if you had a say in it, if you were told side effects and options up front, if you felt compassion from her, if what she said made sense, if she wanted to empower you to know more and was entering this as a team...I don't think you have a reason to doubt.

    I have also found that seed of doubt can be very damaging, especially when some doctors don't know how to handle it. In a treatment plan, you really don't have room for doubt. Go over why you chose this doctor, why you are doing this treatment, and hold on to that. Set the book aside...there are other books that may be just as helpful without watering the seed of doubt.

    Despite my experiences, empowerment should not be to instill doubt. Rather it should only help the patient to understand, ask better questions, think more critically, etc. so the doctor and patient can work better as a team.

  2. Also, I don't know if the fatigue I experience is anything like yours, but I do know there are days I just can't. I cut up some sweet potatoes and had to sit down. I am guessing yours is worse, but I also know that a lot of people don't get it. People see the outside and assume...

    Take the rest you need, nap when you need. Sleep is one of the body's way of healing and so in that sense, it is a good thing. :) Do what you can when you can and do your best to let go of the rest. I believe our bodies often tell us what they need if we listen to them.