Everything Changes - The Guide to Young Adult Cancer

When I was in isolation for radio-active iodine treatment, I was in so much pain from being off my thyroid meds for weeks that I actually wanted to die. This state of accepting and even wanting death was incredibly peaceful and blew the lid off of every idea I had ever had of death prior to that moment.

I’ve spoken with many other patients who have had deeply pivital moments during cancer care, some relating to death and some relating to other facets of life.  Here’s one such moment from Seth, a 30-something lymphoma patient in Everything Changes, who recalled being deathly ill in the hospital and how it changed his understanding of what compassion means:

“I had a constant flow of tears. That is where I connected into what God and spirituality are. It is the brokenheartedness of feeling complete desperation. My heart was cracked open, and there was this incredible tenderness inside. Everybody has this tenderness, we just don’t know how to get there. This fragile state is the closest to being at one with God or the universe. That vulnerable and raw reference point is the greatest teacher. That is where the Dalai Lama, Mother Teresa, and the really compassionate people of the world are coming from. They have a constant access to this deep understanding of what it is to be human and what it is to experience pain.

“To me, this is the most real place, but it’s raw and uncomfortable, so why would you want to go there? We do everything we can in our power to run from that painful, ugly place. It is not necessarily what we would think of as positive. But it is real. We rush around our lives wanting happiness, but it evades us because we are not willing to touch what is real. We think, Oh, it is money or success or things being a certain way that will bring us happiness or satisfaction. But I think it actually comes from that brokenheartedness, which is our true humanity. It is the place where we are our weakest and our strongest. From that place, you can relate to anyone. If you find the ability to hold these paradoxes, you actually have more of a capacity to live fully and to cope with the fact that life is full of paradoxes like this.”

Have you had moments as a result of illness that you describe as epiphanies or profound realizations that you have carried out into your life beyond illness? Do you share this experience with other people or keep it private?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more of these big moments of private, profound thinking.

A few days ago I had a fever. Sometimes simple aches and pains catapult me into an irrational headspace where I’m reminded of treatment, begin to sweat bullets, tremble, and my heart races. (I know I’m not alone in this as many of you weighed in on similar experiences in my post Scared of Every Little Ache and Pain?)

When I’m in this snowballing panic mode it helps to talk to someone about my fears. Often it’s my mom, my husband, or a friend. But the other night I wanted to talk to an insider. So I called a cancer hot line. I didn’t care if the person on the other end was a patient, professional, or a caring volunteer. It just felt cool calling someone whose whole goal was to be awake in the middle of the night waiting for a call like mine.

I described to the woman what was going on for me. Her reply: “Count your blessings. Did you say you have a husband? You should be so grateful you have a husband. Do you know how lucky you are? Just count your blessings and you’ll see things aren’t so bad.”

She was right, my panic wasn’t quite so bad anymore. Instead, it was replaced by a flood of anger, a desire to reach through the phone and smack her. I hung up and called two other hot lines. Both told me I needed to see a therapist. That was all they had to say. Seeing a therapist can be very helpful for some people at the right time. But it actually isn’t what I need now, nor was it what I needed in that moment. What I wanted was to be deeply listened to, to feel validated, to have confirmation that was I was experiencing was hard yet understandable. I didn’t want my experience to pathologized, erased, or negated with positive thinking BS.

I have researched loads of cancer community resources, but not call-in hot lines. From my experience there certainly is a dearth of good ones.

Who do you call when you are freaking out in the middle of the night? What do you want to hear from them? Have you ever called a cancer hot line? Do you have any good ones you can recommend?

Read Everything Changes to learn about the crafty places and unusual people that patients have turned to for stellar support.

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.

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.

One of the coolest feelings is getting emails from patients who say, “I saw you speak, or I read your book, and you totally convinced me to get super aggressive with my doctor, or hospital, or employer, and it worked!”

Managing my own illness has at times felt lonely and defeating.  When I’m crying on the phone with a receptionist trying to get a sooner appointment, or flat like a butterfly pinned down to an exam table, it’s easy to feel at the mercy of the system.  That’s why it’s incredibly important for me to hear and tell success stories about being a pro-active patient. Here’s one:

Six hospital personnel were hovering over a table looking down at my neck: pathologists, radiologists, nurses, and fellows.  They were preparing to do multiple ultrasound guided needle biopsies of deep nodes. Before they began, I sat up and said: “Before you start with the needles, could you first ultrasound my neck and compare it with the images from my previous ultrasound? If the nodes have shrunk significantly is it possible this is not cancer but swollen glands instead?”

They agreed with my suggestion, performed the ultrasound, made a comparison, and conference called my doctors.  The nodes had shrunk considerably and did not merit biopsies. By speaking up, I avoided the pain of the procedure, anxiety of waiting for results, and saved my insurance company thousands of dollars.

I’m not a magician.  I cannot pull insurance out of a hat or make my tumors vanish. But I can catch record keeping errors, reduce my risk of infection by asking my docs to wash their hands, and speak up when I’m having logical thoughts about my health that don’t jive with the care I’m getting.  Forget the power of positive thinking.  I’m about the power of positive, smart, and aggressive action.

Tell me your success stories - even simple ones - about being a proactive patient so other reader can be inspired to use your tricks. What helped you get an appointment, obtain medical records, change your course of treatment, gain approval from an insurance company, or make your care more efficient?

Learn more savvy patient tricks in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I am a huge daydreamer.  My mind is a separate universe with lots – sometimes too much - going on in it.  This can be really helpful when I want to vanish from a situation that I am unable to actually physically escape from.

This seems like a good topic to talk about now, either for those of you who need a mental vacation from illness, or a mental getaway from too much family togetherness around the holidays.

When I am laying on a table getting ultrasounds, I choreography ballets in my mind.  I also love obsessing over the details of dinner parties – I plan menus, table settings, and fantasize about floral arrangements.  I’m also quite addicted to mental wedding planning.  It’s all pretty girlie, I know.  My own wedding got me through a years worth of cancer scans, and now I have moved on to making mental schemes about my friends weddings too.  (Congratulations Dan and Sara on your engagement!)

When I am waiting for test results or anxious about new symptoms occurring in my body, I zone out on apartmenttherapy.com.  It is heaven online.  I am also really into looking at the furniture listings on craigslist.

Without my vivid imagination and ability to totally check out when needed, I think I would have had a serious mental breakdown by now.

Do you daydream when you are stressed out, need to escape your surroundings, or get a break from medical hell or too much family time?  Where does your mind go?

Learn about Greg’s boat building daydreams in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer.  It tanked my survival rate an extra 20%.   I felt like someone was yanking my heart through my nostrils.  Years later, a subsequent pathology report showed no evidence of the rare disease variant.  Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high.  I don’t know what made the variant disappear but I’m extremely grateful.

I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap.  If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance.  Who knows which percentage I’ll fall into?”

I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis.  In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth.  (I’m sure there are still a few docs who think this way.)

I want to prepare myself for the odds, even though I don’t know which side of them I will be on.  The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life.  On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.

It irks me when people say “a number is a number” or “I’m not a statistic.”  I feel like those phrases trash science and I’m a big fan of science.  Statistics represent a lot of information that can help navigate our choices in how we treat our diseases.   I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.

My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats.  Maybe this whole post would read a lot differently if my numbers sucked.

Do you want to know your survival rates?  How do you mentally contain that information?

Ric is is a brilliant and philosphical patient.  Read more about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.