Everything Changes - The Guide to Young Adult Cancer

I recently switched to a new thyroid medication that made my body and mind feel like they were being pressed through the holes in a metal cheese grater.  That was the closest I came to describing this odd sensation.  I had no burning, sharp pain, or ache.  I could not point to a specific part of my body that hurt, nor could I parse out my body from my mind.  When someone runs fingernails down a chalkboard, what is it that actually hurts?  Your ears, your spine, your mind?  This was the same kind of thing.

I have become familiar with the crazy making experience of feeling symptoms for which there are no accurate or typical descriptions.  In the year leading up to my young adult cancer diagnosis I had many such symptoms.  My doctors still have no idea what they were and don’t believe they were related to the 19 malignant thyroid tumors sprinkled throughout my neck.

I used to resent the medical world for only believing symptoms that have been documented and observed in large numbers of patients.  Over time I have shed my resentment; science aids my body, and most doctors are my allies.  Study and discovery based on empirical evidence is their game, from which I benefit daily.  Still, it is scary wall to hit where doctors are stumped by symptoms.  Many docs could do a better job of communicating to patients about these dead ends.  But anger about being an outlier and animosity towards doctors do not help the situation.

Instead, I’ve developed tricks to cope with random, unnamed symptoms.  They don’t always work, but they allow me to be proactive, which can also help me feel better.

1. I make sure I have a good doctor who is on top of new information about my disease.  (My thyroid cancer doctor is fantastic.  I saw at least six other doctors before I found him.  He is not God.  He cannot understand or change all of my symptoms, but his smarts and forward thinking approach to my disease put my mind at ease.)

2. Making up a name for the symptom helps me differentiate it from other sensations I’m experiencing, and allows me to track changes.  Even if my doctor is stymied and not documenting these symptoms, I continue to do so.

3. I talk about my health with someone who believes what I am experiencing and wants to know how I am doing.  It helps to have a friend say, “So how’s the blood-boiling-sticky-taffy-feeling in your upper arms these days?”

4.  I tap into my well of self-confidence and remind myself that what I am feeling is real, valid, and deserves attention even if it has no name.

For more practical tips on coping with illness as an outlier check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. 

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.

It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty - so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read 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.

When it comes to following prescription drug dosing and directions, I’m like a teacher’s pet.  I’m terrified of potential drug side effects – almost to a neurotic and paranoid level.  And I do exactly what my doctor says.  But many patients don’t or can’t.  Especially with the economy in the crapper, I know a lot of people who are splitting pills or skipping out of medications all together.

There have been times, however, when I’ve made educated decisions to go against my doctors’ orders for procedures.  I don’t have a medical degree, but I do have a ton of common sense and research the hell out of my disease.   And sometimes it makes more sense to me to disobey what my doctor is recommending. Here’s an example:

The last time my doc ordered a biopsy of nodes that were half a centimeter, I said, “Forget it.  Let’s watch them and if they grow larger than 1 centimeter, I’m game.” I’ve done my reading.  Medical guidelines don’t recommend biopsies of puny thyroid nodules less than 1 centimeter because the results usually come back as inconclusive.

But, sometimes my desire to disobey my doctors isn’t because of common sense examples like this.  It’s because I’m scared of pain.  I loathe anesthesia.  I don’t want to make one more trip to the friggin hospital.  I’d like to forget the trauma of being a young adult cancer patient.  These are the times that I fantasize about disobeying my doctors.  But still, I drag my myself to the hospital for the scan or surgery anyway because it is the smart thing to do.  (Says the woman who is long over due for a pap smear.)

I try hard to leave my emotions out my medical decision making. I don’t believe in using prayer, faith, or hope when it comes to making sounds medical choices either. I am a staunch believer in evidence-based research and common sense.  I am shocked though how often my really top-notch doctors do not approach my case with common sense.  This most often happens when they are racing the clock, or treating me as a statistic and not an individual whose symptoms and responses don’t always match the typical patient.

I’m not trying to promote Bernard Getz style medicine.  But I am interested in taking action when educated, logical decisions makes more sense than my doctors’ recommendations.

Have you ever disobeyed your doctors orders?  What was your reason for doing so?  Have you ever wanted to disobey their orders but been too scared to?

Read Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s to learn about Geoff who ignored his doctor and went mountain biking the day after his port was installed.

I injured my knee while napping on Wednesday.  (Who gets injured napping?)  Still super painful on Thursday, Shannon pushed me into my doctor’s office in a wheelchair.  The cause of the pain is still a mystery.  We joked with my doc that it’s H1N1 in my knee, or a very new and original manifestation of PMS.  He told me to ice, rest, pop Advil and check in with him on Monday when he gets back from vacation.

My doc’s going on vacation.  Well that’s what he said at first.  Then at the end of the appointment he said, “I’ll be back on Monday, it’s a simple procedure so I should be on my feet in no time.”  What?  He slipped up but obviously wanted me to think he was off to Tahiti not the OR.

The same day, I read on the New York Times Well Blog a post called ‘When Doctors Confide in Patients.’  They told about a young woman diagnosed with MS who worried out loud to her doc about not being able to have kids or work.  The doc confessed she was living with MS too, working as a doc and had kids.  It helped the patient so much to learn about the doc’s life.

I adore my primary care doc.  He’s probably my age and so easy to talk to.  He tells me anecdotes about his life in passing but I don’t have too many details.  Our relaxed conversations help our communication, which in turn improves my care.  But  there needs to be space.  If I knew too much about his life it could get in the way of him giving me appropriate care.  For example, would I be cool with him slacking off or slipping up if I knew he was just diagnosed with cancer last week?  As a patient, I should not be put in the position to have to make that decision.  I think my doc strikes the perfect balance with me of personal and private.  With docs, I think there is a fine line of TMI.

How much do you know about your doctors’ lives?  Do you like knowing about your doctor’s life, is it weird or ever too much information?

For tips on improving communication with your doctors read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was interviewed in the Chicago Tribune this past Sunday about when you know it is time to ditch your doctor. For me the answer hinges on what kind of doctor it is: primary care physicians (PCP) versus a specialist. I’m actually much more stringent about my PCP, and much more lenient on my specialists. Here is why:

My PCP is the gatekeeper of my health. If they don’t ask the right questions, don’t investigate a symptom, don’t remember who I am or if my body has changed over the years it’s a big problem. In the myriad interviews in my book Everything Changes, it was most often the PCP who neglected the signs and symptoms of young adult cancer. Dana’s PCP suggested her back pain was caused by the sexual positions she was using. Mary Ann’s PCP told her she was anorexic and a hypochondriac. Both of these women had blood cancers that were littering their bodies with tumors.

I also want my PCP to connect me to the best specialists. I don’t want them randomly cracking open a pocket-guide listing of docs in my hospital system. My PCP should know who a great is gynecologist is and tell me hands down Dr. X is the best otolaryngologist on staff. If my PCP isn’t hitting these marks it is time for me to move on. I have fired my PCP and my new one rocks.

So, am I conversely forgiving of a rude specialist, who doesn’t remember my name, my medical history, isn’t as communicative? Yes. I search damn hard for top notch specialists. Top docs have access to medical knowledge years before it trickles down to the likes of an average specialist. If my specialist has horrible bedside manner – and some of mine do – I dawn armor and enter my appointments ready to access their life saving knowledge. Can their lack of communication increase the risk of medical error? It might, so I am hyper vigilant. I check my records, repeat information, ask good questions, and develop good rapport with their assistants.

Mozart was an ass but people kept him around because he created some of the most beautiful music ever written. I don’t mind if the same comparison can be made to one of my specialists. As for a PCP…YOU’RE FIRED!

Have you ever ditched your doctor? What made you fire them? Did you tell them why you were firing them? Was your next doctor an improvement?

For tips on doctor-patient communication, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Oh yes, I’ve had appointments where I had to restrain myself from smacking the doc.  Where I’ve had to act sweet and pretty just to get a moment of air time to ask questions about radiation treatment.  Where tears have sprung the moment they stepped out the door because I couldn’t dare be myself in the doc’s presence.  This is why I was floored when I asked him and he said ‘yes’.

I’m talking about my doctor R. Michael Tuttle, MD at Memorial Sloan-Kettering - he’s one of the top thyroid cancer docs in the country.  We’re appearing together this Sunday on a two-hour radio special all about thyroid cancer and young adults. Perfect match right?  I’m a thyroid cancer queen (nine years and counting baby!) and he’s a thyroid guru.   So why was I  floored when he said yes to doing the show?

I’ve had a slew of docs in my cancer career. Most have been top of their game. Their skills were unparalleled, they were leaders in research, and trend setters in their field.  But most wouldn’t answer my questions in their office, let alone answer radio callers on a Sunday afternoon. They were all about science but seemed to care less about my patient experience.

I was actually cool with this. I’m a super empowered person and compensated from elsewhere for what my docs wouldn’t give me.  I hire docs for their skills not their personalities.

But with Dr. Tuttle, I now see that a good doc-patient relationship goes beyond my 15 minutes of face time. I have greater peace of mind and less anxiety about my cancer in general because I get from Tuttle the information I need. I also know that when patients have better communication with our doctors we are able to better follow their instructions for taking medications and adhering to treatment plans.

If I have to go doc shopping in the future, I will still choose skills over personality and communication style. But for now, I’m damn glad that I get to have it all.

What are the qualities you look for in a doc?  Did one ever make you cry?  Would yours do a radio show with you?  Do you have any questions about thyroid cancer and young adults you would like us to answer on Sunday’s show - medical, emotional, or social life stuff?  If you miss the show you can listen to the podcast.

To learn more about how young adult cancer patients have handled their docs’ personalities, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My healthcare motto as of late is quit bitching and start thinking.  Yes, the health care system sucks and we need to vent about it big time.  But, we also need to learn how the system and its players work so we can use them to our advantage.  We cannot do this if we think patients are never to blame.

In my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, I write a lot about how I and other young patients have wrangled the system, fought like hell, and got the care we needed. You can’t win these battles by only thinking like a patient; you sometimes have to think like a doctor.

Last week, Kevin MD posted about patients who annoy their doctors.  A commenter complained about cancer lit that suggests patients bring a friend or family member to appointments because it turns the appointment into “a side show.”  Instead of getting in a defensive-patient tizzy, brewing up an us patients vs. the rest of the world rivalry, I thought I’d try to see if there was value in the comment.

I want my doc to absorb my medical history, perform a good hands on exam, and answer my questions, all in 10 minutes. So maybe the maxim shouldn’t be ‘bring a friend to appointments’ but bring a friend who is medically astute and a skilled communicator. Is it really helpful to have a flighty chatterbox with me in my appointment, who will distract and annoy my doc?  I think not.

Tonight on the Stupid Cancer Show, Matthew Zachary and I will be interviewing Wendy Harpham MD, a mom of three and general practitioner diagnosed with cancer at 36.  Her great new book, 10 Seconds to Care: Help and Hope for Busy Clinicians, helped me better understand the pressure cooker in which my docs work and the ways in which I can actually make their jobs easier.  Considering that their job is to save my life, I’d like to help them all I can.

Are there times when empathizing with your docs works to your advantage?  Do you ever read doctor blogs?  Have you ever brought someone to an appointment who actually made the process more complicated rather than easier?

For more stories about how to be an effective, proactive patient, check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, available wherever books are sold.

I loved Michelle’s response to my post Fashionable Hospital Gowns? It begs the question: How do we take control in a doctor’s office when our tits’n ass are hanging out? Here are some of my tactics.

When the nurse hands me a gown to change into  - I don’t.  Instead, I wait fully clothed in a chair until the doctor enters. (I often work at their desk, which is productive and beats sitting half naked in fear on a vinyl table.) When the doc arrives, we talk about my symptoms/concerns and review labs or scans. Then they leave and I change for the exam.

Some docs hate when I eat up their time with these extra entrances and exits. Frankly, I don’t give a damn. The more comfortable and in control I am at my appointment, the better we will communicate. Good communication reduces the likelihood of phone tag or extra appointments to clear up misinformation.

After the exam, I always get off of the table. I sit in a chair, walk across the room, or if there is no space I just stand up in front of the table rather than sitting on it. I’m a professional choreographer and believe that where you stand in space can manipulate the focus, power, and control of a scene.

Also, if I walk over and pick up my underwear and start putting it on, male and female docs usually bolt for the door and return in a minute or two for conversation when I’m fully clad.

Do you ever think about where you sit or stand and your body language or eye contact during conversations with your docs? How do your docs react when you change up the routine and try to approach things more on your own terms? Are these suggestions practical for your situation?