A few thoughts on unsolicited medical advice

I’ve met some incredible people throughout my life, particularly within the cancer community. One thing I’m fairly certain most cancer patients have in common is that we strongly dislike unsolicited medical advice.

Before you continue reading, please know that this post isn’t meant to offend. When someone offers me advice, I know they mean well and are only trying to help. The good intentions are always appreciated!  However, like most cancer patients, I work closely with my oncologist to follow a treatment plan developed specifically for my tumor and it can be frustrating when someone expects me to try an unrealistic “cure”. Here’s a sampling of some of the unsolicited medical advice I’ve received over the past couple of years, that hasn’t exactly been helpful:

“Did you know Smartwater cures cancer?”  I call BS.  I love Smartwater – it’s my preferred brand. However, I drank it before my diagnosis, I’m drinking it now – and a high-grade glioma is still comfortably hanging out in my right frontal lobe. If Smartwater cured cancer, I’d have bought stock in it long ago.

 

“Are you sure you need radiation? It’s SO bad for you.” Trust me, I know that shooting radiation beams directly at my brain probably isn’t good for it. But neither is a high-grade glioma that causes memory loss, speech impairment, migraines, nausea, fatigue…the list goes on and on. I’ve already discussed the pros and cons with specialists, and inserting your opinions once I’ve already made an informed decision doesn’t add any value.

 

“Do you eat kelp? I heard it prevents cancer”.  Unfortunately no, I never made a point to eat seaweed. Although some people enjoy it and it does have some health benefits, there is no correlation between kelp eaters and being cancer-free. I’ll stick to foods I enjoy, thanks!

 

“Did you get a second opinion? I have a friend who lives on the same floor of a really good specialist…” I spent weeks getting second, third and fourth opinions. I went to Dana-Farber, Tufts, and Brigham & Women’s for consults before meeting my oncologist at MGH. It’s a stressful time post-diagnosis for cancer patients and their families as they try to navigate different treatment options. If someone has already chosen a doctor and a course of action, it’s (usually) best to avoid this topic.

“You should try this clinical trial I found.” Bottom line, if there is a clinical trial that I qualify for and should enroll in, I’ve already heard about it from my oncologist. There are many reasons why cancer patients aren’t enrolled in clinical trials, and the reasons vary. They may not qualify for reasons unknown to you, or they simply may not want to feel like a guinea pig. This is a really sensitive and personal topic to many, so it’s best to just avoid going there at all.

Have you ever received strange and/or unsolicited medical advice? Feel free to share in the comments below!

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Scanxiety and MRI Day

It’s Sunday night, and the feeling is all too familiar. Sure, the Red Sox are playing in the World Series and Sunday Night Football is on…but my routine MRI is scheduled for 10am tomorrow, and it’s all I can think about. Usually, people only see my “GOOD MRI! Stable results!” posts on facebook and instagram after MRI day. I’ve been lucky enough to make that post 3 times in the past year, so people may not realize how exciting that truly is. In order to understand, I want to walk you through MRI day for those of us battling brain cancer.

Every 3 months, I have to get an MRI. If you’ve ever had one, you know they’re not fun. The thing is, I know that my tumor is going to start growing. My doctors and I have discussed it at length. It’s just a question of when – and that’s what this MRI is checking in on.

MRIs aren’t easy for me. Because of my tumor, it’s not just zipping in and out of the machine for a quick image. I have to arrive 30 minutes early to change into two uncomfortable, scratchy “one size fits all” hospital gowns, get my blood drawn, and get an IV put in. Then, I have to sit in a cold waiting area with my IV in (but capped) for anywhere from 20 minutes to an hour depending on how long the wait is.

Finally, when it’s my turn, I have to lock my personal items in a locker and go through a metal detector. Fun fact – You absolutely cannot wear metal into an MRI machine as it could be deadly. An MRI machine works by using large magnets to create strong magnetic fields, 1,000 times the strength of a refrigerator magnet. They have the metal detector to make sure I haven’t forgotten a bobby pin or neglected to take off any jewelry.

Me at my last MRI. The hospital clothes are AWFUL!

Next, I walk into the freezing-cold room and am required to put bright orange earplugs in. They don’t work well, feel like cheap foam and are always falling out. Once those are in, I get to lie on my back on the hardest board ever (it’s completely flat with no padding) and get positioned. They put a cage-like mask over my face to keep my head in place, as I cannot move my head during the entire MRI since they’re imaging my brain. They give me an “emergency call button” which looks a lot like a stress ball, and the machine starts moving and I’m basically in a tiny metal cocoon.

For the next 25 minutes, I am lying completely flat listening to extremely loud sounds – anything from clicking to high pitched screeching to very low tones (those ones are the most tolerable). If I have to sneeze, I can’t. If I want to yawn, I can’t. I have to be perfectly still, since they’re imaging my brain. All I can do is think…and the only things crossing my mind are:

• What are we going to do if the tumor is growing?
• Will they keep me on wait and watch, or will they want to treat it?
• Wow, that was a loud bang – holy crap!
• I forgot a few words yesterday…that means the cancer is growing
• God, I hope it’s not growing
• Shit, did I feed Mickey before we left?
• In less than 2 hours, I’ll have the results…

Not fun thoughts. (Steven always reassures me he’s fed Mickey).

Eventually, the technician comes over the speaker and says “OK Rebecca, we’re going to give you the contrast now”. They slide me out of the machine, but they don’t take the mask off so I still can’t move. They inject the contrast into my IV (the contrast is what lights up my tumor on the scans), and I get a really salty taste in my mouth. Then, I go back into the machine for another 20 minutes of loud banging.

Finally, when the technicians are happy with the imaging, I get to leave, but not without a bad headache. I meet Steven in the main waiting area, and we head to the other side of the hospital where my oncologist’s office is. We grab a coffee, and wait for an hour until my results appointment. That hour is probably when the scanxiety is at its worst.

 

Goodnight!

Rest in Peace, Senator.

I haven’t blogged in a while, mostly because life is going fairly well for me…all things considered. I need to feel inspired in order to write about brain cancer, since my coping strategy is to try to keep it in the back of my mind and writing about it brings it to the forefront.

Unfortunately, inspiration hit today with the passing of Senator John McCain.

I have so many feelings on this, and am not sure how to express all of them.

I will start with emphasizing how ANGRY I was when he was first diagnosed with brain cancer. I remember learning that he had been diagnosed with a Glioblastoma, which is a Stage 4 Glioma. (For reference, I have a Stage 3 Glioma). THERE IS NO CURE FOR GLIOBLASTOMA. When doctors reference survival rates, they are referring to the amount of time someone with GBM has left. People diagnosed with GBM are usually dead within 12 months of diagnosis.

I was diagnosed with brain cancer in March of 2017, and Senator McCain was diagnosed 4 months later. At the time, I was very angry as I was still coping with my own diagnosis. I was getting so mad at people who would tell me “a positive attitude beats cancer! Fight on, warrior!” If it was that easy, I’d put on my boxing gloves while singing songs about sunshine. Unfortunately, that’s not how it works. Don’t tell me about the essential oils that will miraculously cure my cancer, or the special diet I need to go on. It’s maddening. If essential oils cured cancer, I’m pretty sure cancer would be eradicated.

When I learned Senator McCain had GBM, I knew his time was limited. And to hear so many people – including his former Presidents and senate colleagues – say that John McCain would beat this cancer because of his fighter mentality… well, it made me realize how uninformed people are. Being diagnosed with GBM is literally a death sentence, and it’s devastating.

Right now, I’m feeling sad and angry.

I’m heartbroken for the McCain family, and if you haven’t read Meghan McCain’s post on twitter today honoring her father, you should. It will bring tears to your eyes (or if you are me, waterworks…) but is also a beautiful tribute.

I’m angry that brain cancer research is one of the most underfunded areas, and yet the cure rate for this cancer is significantly lower than other cancers. I’m angry that the media reporting on John McCain’s diagnosis misinformed so many people, giving them false hope that the Senator could “beat” this diagnosis. He never had a chance.

I believe John McCain knew from the moment he was diagnosed that he would succumb to this disease. But in typical John McCain fashion, he wanted to give the public hope – and show them his courage and strength.

We lost a father, husband, son, leader, teacher, role model, and truly great American today, and my heart is broken.

Rest in Peace, Maverick.

 

 

 

 

 

 

 

Can I ever consider myself a cancer survivor?

If you google “Can you survive brain cancer?” here is the result:

“When you are diagnosed with a serious illness, like a spinal cord or brain tumor, learning about survival rates and prognosis for your condition can make you panic even more. … But spinal cord and brain tumors are very rare forms of cancer, accounting for less than 2 percent of all cancers.”

Thanks, Google. So uplifting!

I remember right after I was diagnosed, I went through a two month period where I was panicking. I didn’t understand my prognosis, and was too afraid to ask my oncologist (I was afraid of the answer). I had, however, convinced myself that I was going to die within a couple of years thanks to Dr. Google. My anxiety over this got to the point where my husband finally made an appointment with my oncologist so that we could sit down and discuss my prognosis.

Thank god we finally had that conversation. I was pleasantly surprised when my oncologist said thanks to my IDH mutation, I was looking at a much better prognosis than other cases of high-grade gliomas. When I asked what that meant in terms of years, she showed me and Steven the latest statistics and because patients in this study are still alive after 16 years, she couldn’t give me an answer. Talk about HOPE!

So, although I have a good prognosis, I will always have brain cancer. 

There’s got to be a term for those of us with brain cancer, who are living MRI to MRI. There is no true “remission” for us. Brain tumors embed themselves into your brain tissue, and the cancer cells are so microscopic, you can never fully get rid of them. After treatment, if they’re not growing, that’s considered good. If they start growing again, you may need another surgery, another round of radiation, or more rounds of chemo. There’s really just no way of knowing, and that’s what makes brain cancer so terrifying.

This leads into the question: can I ever really consider myself a cancer “survivor”? I’ve always thought of a cancer survivor as someone who has beat cancer and is in a true remission, with no chance of the cancer coming back. With brain cancer, reocurrances are so common that they’re almost expected. Those of us with this disease are constantly worrying about if the cancer is growing, and that’s why you may see us write about “scanxiety”. Our MRI’s every couple of months tell us if our tumor is stable or if it’s growing, and it’s nerve wracking each time we wait for the results.

Although I am done with my treatment (for now…hopefully forever!), I don’t think I’d consider myself a cancer survivor. Sure, I’m surviving WITH cancer, but until doctors can find a cure, it’s always going to be there. I’ll always be a patient, and I’ll have MRIs every 2-3 months for the rest of my life. There’s no escaping the cancer.

When people ask how I’m doing, I can’t say I’m in remission. What I typically say is “I’m doing well”, and just leave it at that. I think the best term to describe it would be “stable”. I’m stable until the next MRI, but I’m not a cancer “survivor”.

What are your thoughts on the topic?