Everything Changes - The Guide to Young Adult Cancer

I began my Everything Changes blog a year and a half ago and in that time I have posted religiously a few times per week with no break.  It’s time.  I need a little vacation. My illness is inescapable, but luckily at the moment, my daily life is not.

While I’m away, I thought I’d share with you some posts from the last year and a half that particularly stand out in my mind.  If you are new to my blog or a regular reader, I hope you enjoy them and add some more comments.

Do You Like Being Called Strong?

Health Insurance the Scary Sex Dream

Do You Give Thanks For Your Illness?

Smart Responses to Stupid Comments?

Thanks to all who attended my book reading in San Francisco on Wednesday night.  It was a smashing success and packed to the gills.  I’d call it standing room only, but this is San Francisco we’re talking about so those without chairs were sitting and lying on the floor instead.

Also, I was interviewed on the BBC Radio today about “healthcare reform” from the young adult cancer perspective.  I still have to put that one in quotes until something real actually happens.  If I find a podcast of the interview, I’ll be sure to post it on facebook and twitter.

See you back here March 8!

We all need escapes from the insidious world of illness. And I’m about to take a big one. I’m headed out to San Francisco on Monday for a Stupid Cancer book reading and then I’m taking a 9-day vacation. No blogging. (I’ll miss y’all!) No writing. No cancer nothing. I love my work and my daily life, and I love getting a break from it too.

Lucky me that my husband has a kagillion frequent flier miles from work. We’ll be spending time in a cabin stowed away by a fire, napping a ton, and reading to our heart’s content. But I haven’t always been this lucky. There have been many times when I’ve been too sick to travel or could not afford it.  Instead of the luxury of travel, I’d get crafty spending moments around my house or my city that felt like vacations. Here are some of them:

Sipping tea at Julius Meinl coffee shop. Their free cookies and European service help me forget I’m in Chicago.

Sitting at the Garfield Park Conservatory. They have a huge series of greenhouses smack dab in the middle of the city brimming with ferns, greenery, and ponds. Feels downright tropical and it’s free.

Soaking in a bath. I do this so infrequently that when I make it happen, I feel like I’m living someone else’s life.

Escaping to nature. When I was going through treatment in San Francisco I would find beautiful parks, hills, gardens, hiking trails. Even if I didn’t have the energy to walk, just sitting on a bench in the midst of nature was a total departure from my world. (I’ve yet to figure out how to do this in Chicago.)

Becoming another character. I deeply love reading because it allows me to enter an entirely different world and totally tune out. Some of my favorite books are short story collections by Alice Munro and Jump Lahiri.

How do you get a vacation from your life without spending much money or without traveling far? I’m looking for some intelligent fiction to read on my vacation.  Any recommendations?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how other young adult cancer patients stayed sane during their illness.

Patients excel at slamming our doctors online.  Sometimes our words are thoughtful, constructive criticism, and other times we are just spewing.  While it is necessary to vent sometimes, we run the risk of losing credibility if that is all we do.  I hope my blog contributes to constructive patient conversation. Still, I don’t think I take enough time to acknowledge who has done right by me. So that’s what I want to do today.

Someone who’s done right by me: My anesthesiologist.

My first surgery had scary recovery room complications due to anesthesia.  I was totally freaked out and didn’t want a repeat performance with my second surgery. I asked to speak with my anesthesiologist before going under the knife. He visited me an hour before hand and sat in a chair, eye level with me on the gurney. He listened to my concerns and past experiences. He explained in detail how he could adjust the combination of anesthesia to avoid a repeat experience.  He spoke to me slowly and created a sense of relaxation.  When I told him how helpful he was, he offered to visit me in the recovery room, and I gladly accepted.  Before leaving he shook my hand, holding on to it for an extended period of time as we finished our talk. The anesthesia went off without a hitch and replaced my horrible memory with one of competency and safety.

I was looking for an MD with medical smarts, not a therapist. He gave me his smarts with incredible sensitivity that helped relax me at one of the most stressful times in my life.  By calming me, he also made me an easier patient for the rest of the medical staff to cope with.

What healthcare professional has given you care that stands out from the crowd in a positive way? I hope a few doctors, nurses, and techs will read your comments and recognize what they are doing right, and/or see what could work better.

Read more about how to find a stellar doc in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Two years into my cancer experience, I still had the nagging question: “Am I in denial?” I heard that cancer patients protect themselves in a natural bubble of denial in order to cope. Eventually that bubble bursts and you start dealing with the reality of your newly altered life. My bubble never burst. I never felt myself cross a threshold from denial to reality. I waited and waited, even tried to provoke it. Finally I realized it wasn’t happening because I was never in denial to begin with.

The first 24 hours after my diagnosis, I felt shock.  I dreaded calling my mom and dad to tell them I had cancer. I went to class that night like nothing was wrong. I took my teacher aside afterwords and said, “Hey I was just diagnosed with cancer so I might need to go to a few doctors appointments.” But the next morning I woke up and it just sank in. I have cancer. I have cancer. I have cancer. It was a really profound experience to feel those words being absorbed into my mind. I felt extremely compelled to keep my eyes wide open and walk forward. I didn’t want to push cancer away.  I accepted it into my life immediately.

I think part of the reason why I couldn’t be in denial is because I had nobody else to take care of me or to fight for me to get health insurance.  Not always, but sometimes, denial is a luxury.   In small doses, denial seems like a benefit, a nice place to visit. It was a bitch to have cancer on my shoulder 24-7 and I wouldn’t have minded dwelling in denial a bit to get a mental health vacation from it all.

So why not denial 24-7 instead of the bitch of cancer?  Denial can pose a serious risk if it keeps you from getting medical care, from meeting the reality of your needs, or if it severs relationships with people who are walking in the real world.

Maybe that’s why there’s a lot of judgment placed on the word denial: “You’re so in denial!” (Who ever says that in a kind tone of voice?)  People are accused of being in denial.   The word stings and has a bad rap.   Should it?

Have you ever felt like you were in denial? Did it serve you well? Have other people accused you of being in denial ?

Want to read an outstanding tale of denial?  Check out Malignant and Indignant, a chapter in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Breast cancer is pink. Colon cancer blue. What color is the ribbon for hospital-associated infections?

Did you know that more people die per year from healthcare-associated infections than from breast cancer? (The stats: 99,000 according to the CDC vs. 40,000 according to the National Breast Cancer Foundation. The CDC number doesn’t even include people who die from medication errors or surgical mistakes.)

Suffering from medical errors and healthcare-related infections isn’t heroic. There is none of the cultural glam factor that’s ascribed to battling cancer, no Hallmark MRSA cards. But I’m still into making medical error reduction the cause du jour.  The best that can happen is that it will save my life.  And it is hugely more comprehensible and quickly fixable than finding a cure for cancer.

At my recent University of Chicago appointment, a piece of paper called “Speak Up” was sent to my home before the appointment, a nurse read it to me before the doctor entered, and it was posted in plain view in the exam room. The paper said, If you feel comfortable, please feel free to:

1. Ask everyone to identify themselves and wash their hands.
2. Have confirmed your name and DOB before taking meds or treatment.
3. Ask your doc or nurse to fully explain labs, tests, or medications ordered.
4. Ask to speak to a clinic manager to address any concerns.

How freaking fabulous. Never before had I felt so encouraged by a hospital to take charge of my care.

Have you ever suffered from medical errors or healthcare-related infections? What other patient safety points would you add to this list? Would you feel comfortable speaking up in this way?

Read tips from Greg, a stellar patient watch dog, in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

One of many things that would kill me faster than my slow growing cancer is adopting the mindset of positive thinking. It is so against my nature. I’m sure this makes me sound like a curmudgeon. But why? The opposite of positive thinking isn’t negative thinking; it’s realistic thinking.

I woke up the day after my diagnosis and began thinking hard about these realities: My cancer could spread. I could live, I could die. My doctors might make mistakes. My activities might be limited. My finances might be impacted. And of course, there was the realistic hell of finding out that I had no insurance.

I didn’t spend much time wishing away these circumstances.  Instead, fully absorbing the reality of these putrid situations helped me stratagize and meet my needs.  It encouraged me to research like mad, and turn this bundle of research into resources for other cancer patients to use.  Spending sometime staring at these scary realities has helped me feel my feelings instead of bottling them up. It has allowed me to live fully with ‘what is’, which has made a lot of room for both sadness and joy.

I deeply want positive outcomes in my life, but I don’t believe that thinking positively about them will make them manifest.  Instead I believe that positive health outcomes occur by using smart science, making the best rational decisions possible, encouraging good public health policy, having enough money, support, or resources, and being on the right side of medical mysteries for which there are explanations that we have yet to discover.

Do I have times when I think positive thoughts? Yes. There are many instances where I am encouraged by the world around me and by the direction of my own life. But as a mantra or a mind set – no thanks. If someone could prove with solid evidence that thinking good thoughts would change the course of my life, my cancer, or my treatment for the better – would I become a positive thinker? Show me the proof and I’ll get back to you on that one.

I was recently interviewed in a slide show feature by Lori Hope called When Positive Thinking Isn’t Working, Get Real,  along side  Barbara Ehrenreich and Dr. Jerome Groopman and others. I loved seeing realistic thinking addressed as a valid and practical tool to help cancer patients cope with the emotional and practical side of living with this disease. It’s a must read.

Do you consider yourself a positive thinker, a realistic thinker? What does that mean to you?  If you are not big into positive thinking - how do other people respond to that?

For more cancer conversations about realistic thinking, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Seems like alternative medicine and diets never get rational airtime. Some people slam them, writing off as quackery anything non-allopathic. Others become super cheerleaders letting alternative medicine and diets engulf their identity in a creepy almost cult like fashion. Neutral patients are left in the middle with little rational, scientific based information nor sensible peer support conversations about “natural” health and healing.

On discussion boards it seems everyone’s either adamantly defending products and regimens with absurd anecdotes (quite different from sensible coping strategies) or they’re bashing the hell out things. Few readers learn anything other than propaganda for or against.

I’m a big fan of patients being proactive, whether it is about alternative or allopathic care. That’s why I felt so disappointed last week when I saw on a facebook thread patients discussing gluten-free diets. One told the other to try it, because it could cause no harm.  The sentence reminded me of the Life Cereal slogan: “Ask Mikey, he’ll try anything!”

Nothing is without possible side effects, even simple diets.If I were going gluten-free here are some things I’d consider: 1. Stress. A study came out from Columbia University about the economic burden of gluten-free food. Do I have the time or money to accommodate a new diet? 2. Changes in diet can significantly alter a person’s nutritional profile. A lot of gluten-free substitutions are high in fiber. Diets high in fiber have in the past caused me horrible cramping and intestinal bleeding, followed by extra doctor’s visits, labs, and more medical bills. 3. Different foods impact the absorption of my thyroid hormone pill, which is used as therapy to prevent my cancer growth. This is a serious consideration.

There might be good solutions for each of these consequences. I’m not saying patients shouldn’t engage in alternative medicine or new diets. I’m just saying it’s naïve for us to think they can’t cause harm, especially in patients who are critically ill.

What are smart tips, lessons learned, and warning signs you have experienced with alternative medicine?  Have you ever had negative side effects from herbs or diets? Do you talk to your doc about the non-allopathic care you receive?  (No propaganda comments for or against products or diets please - just smart helpful info.!)

For a check list of smart questions to ask alternative medicine practitioners, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.