Entry 6: BONUS BLOG: Mammography

So, last week I had my second mammogram (an experience that I will vlog about somewhere down the line). I don’t want to give too much away, but it was MUCH different than the first time. Stay tuned.

As I mentioned in Vlog 5, from here on out some of our production values get sketchy. So far, that is most apparent in this entry. Going into filming I knew we were varying significantly from the truth of mammograms, but repeating the process last week reminded me of some facts I left out and inspired me to give a few tips about the process. So, while I hope my vlog was amusing, below are some truer thoughts on the art of mammography.

1) The photo to the right is what a mammogram machine looks like: The compression plates do look like clear cake pans or Tupperware, but there is also this giant machine.

2) A radiologist stands behind a partition (shown in the photo to the left), so she (or he I suppose, though I’ve not seen any male mammo techs yet), doesn’t get zapped by radiation all day long.

3) Do not wear deodorant the day of a mammogram (you’ll have to wipe it off anyway). Don’t wear any necklaces (again, you’ll have to take them off, why risk losing them?)

4) Do schedule the mammo for one week after your period ends (if possible). Your breasts are least sensitive this time of the month. Also, do as I did and dress in two pieces so you only have to take your top off. This goes for all doctor trips revolving around breast cancer.

5) Before the mammogram begins, the tech puts a led apron over you (from the waist down), to prevent you from getting zapped by more radiation than is necessary. She also sticks nipple markers on your nipples. They look like the male end of a snap. I don’t know what they do. They’re not a big deal (or I would have remembered them from the first time).

6) During my first mammogram, the machine was tightened in the way I describe in the video (Marla stood behind the partition near the wall and pushed a button that tightened the machine). It seems to be more typical that the machine is hand-cranked by the mammo tech.

7) Not all people find mammograms as painful as I do. But… I do. However, more important than knowing that a mammogram may be painful, is knowing that it is quick. Even if it hurts like hell. It will only last a few seconds. I promise.

8) I still think even with all the research out there questioning the importance of mammography that you should get mammograms. My mother has had breast cancer three times. Every time it was found through mammography.

Again, I think mammograms are a pain in the ass; but you know what’s worse? End stage cancer that could have been detected if you hadn’t skipped your mammogram. That’s worse. So get mammograms! 

Also!  As promised, a link to a video about mammograms (that feels like an airplane safety video) can be found HERE.

A much more detailed video can be found by clicking the media link for "Quality Mammography Video," at the site linked HERE.

Entry 5 : BONUS BLOG: Jacey in Cancerland

This vlog is both my favorite and least favorite so far.

It’s my favorite because it covers one of the most intense parts of my experience, and there is something cathartic about sharing these moments with others. Even though this is probably the darkest material I’ve delved into so far, it was really fun to write. I knew exactly what I wanted to say, because I replayed what I could remember from that day over and over again in my head in the days that followed. I feel these actors conveyed the story with such truth (which is good, because these people were some of my favorite and most important on my journey). There are a lot of reasons it’s my favorite.

It’s my least favorite because I’m fat.

This is a very common side effect of the kind of chemo I had, and for me it’s been the hardest. Since beginning treatment I’ve put on more than twenty pounds. I love filming the vlogs, but lately every time I look at an entry all I can see are double chins and lack of waistline.

The thing is, I used to be a Size 0. I used to be a Size 0, and I lived on Nutella and processed crap, and I almost never exercised, and I was still a Size 0. I know. You hate past me. I do too. Don’t worry, she gets her comeuppance! She has cancer! And wears a size 6...

Let me be clear: ain’t nothin’ wrong with a Size 6. Ain’t nothin’ wrong with a Size 16. Beauty comes in every size.

However, there is something wrong with a Size 6 wearing her old Size 0 clothing. It ain’t pretty. Nothing fits. I look terrible in everything I own. Even the things I can squeeze myself into don’t feel right.

Right after my diagnosis, this was how my world felt. I was the same person, in the same body, with the same job and the same friends—but things didn’t seem to fit, in the way they once had.

It reminds me of Alice in Wonderland. The Caterpillar says to Alice, “Who are you?”and she explains that she really doesn’t know, for one thing, she can’t stay the same size for ten minutes all together. (I can relate). For a while after my diagnosis, I didn’t feel like my life was my own, and I worried I would eventually lose a part of who I was (Little did I know I wouldn’t lose, but gain!)

Like Alice, I met a lot of incredible characters all of whom gave me advice and choices and directions, but at the end of the day the decisions were up to me. I had to choose the right path to take, and even now, as I’m about to wake up from Cancerland, I can’t be sure I made the right choices.

I am told that when I’m done with treatment my body will begin to “get back to normal.” I’m young, so I should have no problem rebounding… But I don’t know. I mean, do you think life was the same for Alice after Wonderland?

This is my favorite vlog and this is my least favorite vlog because this is the moment I fell down the rabbit hole. The journey has had highs and lows, favorites and…un-favorites and I think this vlog shows those contradictions—the beauty of a moment where we choose to laugh through our tears, and the unfortunate way I look with florescent overhead lighting.

What's Next?

“What’s your prognosis?” is a common question I am asked.

This is a polite of saying, “Are you going to die?’

My answer is, “Yes. I assume I am going to die at some point, but I don’t know when any more than you, non-cancer-ridden-person, do.”

Watching the Oscars a couple weeks ago I wondered, like many, why the director of Frozen, Chris Buck, thanked his son and “guardian angel” Ryder Buck in his acceptance speech. I mean… I didn’t really wonder "why." I assumed his son had died and was now watching over him. But again, like many, I wondered what had happened to this boy.

Ryder Buck

Turns out he had cancer.

Ryder was 22 years old when he was diagnosed with Stage IV testicular cancer. After his diagnosis in fall 2012, he underwent surgery to remove his tumor and followed up with several rounds of chemotherapy. In fall of 2013, his tests indicated that he was cancer free.

Then he was hit by a car. 

Yeah. Here he is, this kid who beat testicular cancer, and just as he’s getting better—going back to school, and finding his life again, his car blows a couple flats and he can’t find his phone (lodged under his car seat). He decides to walk home along the freeway and dies, smashed between two cars.

Why am I telling you this incredibly depressing story? Because a lot of people are diagnosed with cancer and feel they have been given a wake up call, “Holy shit! I have cancer. I am going to die!” It doesn’t matter if you have an early stage cancer or late stage, the diagnosis wakes up your sense of mortality.

Well, non-cancer-ridden-friends, I am going to give you the same wake-up call. We’re all going to die. Don’t cry. Seriously. It’s fine. It’s gonna happen. We can’t stop it and no one, whether they are sick or healthy, knows how much time they have.

“What’s next?”

My dad and I

The night my dad died, I was in my boyfriend's apartment in New York watching The West Wing.  Martin Sheen's character always reminds me of my dad.  For one thing, they both have the same favorite phrase, "What's next?"

My dad was someone who didn't look backwards, only forwards. He had a lot of plans, even though like all of us he know that "planning" was really guessing... In fact, he used to say, "If you tell me what you're doing tomorrow, you're guessing.  You may not be here tomorrow.  I may not be here to check."

My dad was gone very suddenly. On a Wednesday. He had plans for his weekend… Plans for his career. Plans for his relationship with my sister and I. This knowledge that he wasn’t finished when he died has been the hardest thing to deal with since his death.

The greatest comfort to me was that he had more than plans, he had accomplishments. He published five books, had a musical on Broadway, gave motivational speeches and inspired thousands of people. He traveled to all fifty states, Asia and Europe, he was married for almost twenty-five years, and raised two children.

He had plans for the future, but he lived in the now.

So the theme of today’s blog is: LIVE! It’s spring, the weather is getting warmer—get inspired. Do one thing every day that scares you. Start planning today to get the things you want most tomorrow. Because tomorrow you may have cancer or get hit by a bus, or maybe tomorroweverything will go exactly as you planned. But either way, you don’t have forever. You have to live now. Because no one really knows what’s next.

Entry 4: BONUS BLOG: Clinical Breast Exams

This week’s entry depicts a clinical breast exam (CBE). Clinical Breast Exams are basically THE way breast cancer is detected in women under 40 (as mammography is not recommended for this demographic). As I noted in a previous blog, studies are now showing that CBE’s may be equally effective in detecting breast cancer in women of all ages.

So, listen up, ladies! This is important!

A couple things to know about reality vs. vlog in this entry:

1) Breast exams are typically performed in exam rooms, not in offices. Accessing exam rooms to film in has been a challenge (although future vlogs have been filmed in exam rooms. Thanks IVF-New Jersey!). This was shot in a rehearsal studio near Lincoln Center. Lincoln Center is the home of the Metropolitan Opera. Halfway through filming a baritone starting rehearsing next door… this may be why opera music is playing in the background. 

2) Most breast centers do not play opera music.

3) Yes fellas, breast centers are a real thing. They’re not as amusing as they sound. Sorry.

This chick makes CBE's
look like a spa day.

4) I have had a few clinical breast exams. Because of my family history, since I turned 18, I have had them performed by PCP’s and Gynos. These exams were usually performed sitting up on an exam table for a visual assessment, and then lying down for a physical examination. The nature of physical examination varies from person to person, but always involves palpating (ie feeling up) both breasts and the lymph nodes under each arm pit, generally using the pads of the fingers.

Our exam was performed standing up, because again, we weren’t filming in an exam room and had to work within the parameters of filming in a rehearsal studio. Real CBE’s aren’t performed this way. However, the section where The Navigator compared my breasts visually was very true to life. Yes, she did ask if my nipples have always been “different.” No, I will not tell you how they are different. A girl’s gotta have some secrets. Although, obviously I no longer have very many.

A few more important facts about CBE’s:

1) CBE’s can be performed by any medical personnel trained to do so.

My Primary Care Physician has performed them when I don’t have plans to see my gynecologist in the near future. My gynecologist has performed them on me (of course), but so have nurses and nurse practitioners. The Navigator was an MA, RN. I think she did a great thorough job—absolutely as good a job as any doctor I’ve had.

Something I don’t talk about in the vlog is that I had a CBE performed in May by my gyno, and she didn’t feel any abnormality. Probably the cancer was too small to detect through a CBE, but I will say I felt her CBE was less thorough than the one performed by The Navigator.

My point is, it doesn’t matter who performs a CBE (doctor, nurse etc.) as long as they are good.

2) ACS recommends women start having CBE’s at age 20, at least every three years.

I recommend having them every time you go to a Primary Care Physician or Gynecologist for a check-up, because, why not? If you go annually like you’re supposed to, that’s once or twice a year—it takes five minutes, why not do it?

Actually… there is a risk. Studies show that after ten years of CBE’s, the rate of “false positives,” is about 20 percent. This means 20% of the time a doctor feels something “off” and sends a patient for follow-up tests, it turns out to be nothing. These tests can be painful (as my next three vlogs will indicate), and "cause emotional distress."

That said, the pain and emotional distress of diagnostic tests is minimal when compared to the pain and emotional distress of terminal cancer. So, my vote is err on the side of caution and have your doctor touch your boobs.

3) Ask your doctor about your breasts when you have them examined.

Have your doctor describe your healthy breasts to you. This is not a pre-cursor to asking your doctor on a date. 

I wish I had known my breasts better before having cancer. I think if I had really thought more about what my breasts felt like, I may have detected my cancer sooner. I know I have always had dense breast tissue (which makes cancer harder to detect), and doctors told me that. But, looking back, I wish I had other descriptors. I feel if I had had words to describe my healthy breasts, I would have realized sooner that I was using new words to describe my breasts with cancer.

That said…

4) Breasts change: over time due to age; month to month due to periods; babies, menopause… all these things cause breasts to change.

I will talk more about this in another blog about self-breast exams. But, because breasts do change try to schedule breast exams at the same point in your cycle, ideally just after you finish menstruating (this is when your breasts will be least sensitive to a doctor prodding you).

So, that’s it! Clinical Breast Exams are easy, and potentially life-saving. Do them, your girls will thank you (and so will the rest of your body!).

It will be two weeks until the next vlog, but expect a few extra blogs in the interim. More on that here.

More on Clinical Breast Exams can be found lots of places (just ask Google), but I especially liked Susan G. Komen’s Info Page.

Where's My Vlog?

As you may have noticed, there was no vlog yesterday.  Sadness. However!  There will be a vlog next Thursday (March 13th). Happiness!  But there will be no vlog on Thursday March 20th. JACEY!  Stop toying with my emotions!!!

I know.  It's a lot to handle.

Ultimately, we hope to consistently release a vlog a week. However, it is difficult to coordinate many schedules to getting filming done in a timely manner, especially because everyone is working around their real-life schedules which involve running businesses, raising children, undergoing chemotherapy, etc. etc. 

Between now and Vlog Entry 5 on March 27th, I'm going to try to do some extra blogging to compensate for the lack of vlog. Keep checking back!

Entry 3: Resources for Women Under 40 Seeking Breast Exams

I taped this week's vlog entry more than month ago. I filmed the tag promising to post links for young women seeking easier access to mammograms.

I feel like I have failed.

I have reached out to many organizations (Susan G. Komen, StupidCancer, and The American Cancer Society to name a few.) Mostly these organizations weren’t able to help me, because free or low-cost mammograms for women under 40 are simply not available.

But, I have found some resources to check out, and ways to help women like me buck the system a little.

First of all, let’s note that there are two reasons to get mammograms:

1) A Routine Screening

The American Cancer Society recommends all women over 40 get routine mammograms. There is no indication that routine screenings for women under 40 are particularly effective in finding breast cancer. One reason is that cancer may look the same as healthy breast tissue in young women with dense breasts on mammograms. Many doctors feel that ultrasounds are a more effective diagnostic test for young women.

If you have a strong history of breast cancer in your family and/or have been diagnosed as BRCA1/BRCA2, annual or even bi-annual mammograms or ultrasounds, could be beneficial to you.

2) A Diagnostic Test

When I began looking for a mammogram, it wasn’t because I of my family history, it was because I had an actual lump in my breast. I was seeking the test to determine what the lump was. In young women, health care providers don’t immediately jump to breast cancer: cysts or fibroadenomas (both benign) are much more common. BUT, while most breast masses are benign, the word most indicates, not all. As I know all too well.

So, now we know the difference, how do we get access?

Routine Screenings

The legitimacy of routine mammograms for women of any age have recently come into question. A vast 25 year study showed the death rate among women receiving annual mammograms versus those receiving annual Clinical Breast Exams (CBE) were identical, as the New York Times recently wrote.

As a woman over 18 or 21, you should be having an annual exam with a gynecologist. Make sure that exam always includes a CBE. They take five minutes, so make sure your healthcare provider provides one. If you are uninsured, note that Planned Parenthood will provide this service.

Anecdotally, I should share that my gynecologist performed a CBE four months before I discovered a lump the size of a golf ball in my left breast. I don’t believe my doctor missed anything, I believe at that time it was too small to feel. Breast cancer in young women can grow fast.

Regarding The Affordable Health Care Act (which always comes up when we talk about free health care services): yes—it does cover mammograms. However, the regulations vary from state to state and no state offers regular screenings to women under 40 (some states provide baselines to women between 35 and 40). See more here.

Fear not! If you have a family history and want annual mammograms, there are ways to attain them...It’s just not super easy. A great resource I found (and is cross-referenced with the National Cancer Institute above) was the Center for Disease Control (CDC).

Through the CDC there is a National Breast and Cervical Cancer Early Detection Program (NBCCEDP—longest, most forgettable acronym ever). After visiting their home page, you can click on “Find a Screening Provider” then click on your state. It will offer you a link to a state-funded cancer detection program.

The New York State Program only offers free-screenings to women over forty, but notes that women under that age who have been designated “high-risk” by a NYS Medical Provider can also receive scans.

I looked at a few other states: Wisconsin offers only women between 45 & 64. Illinois didn’t list age requirements on their home page or in their FAQ’s.

I really loved the CDC page because it also provided links to cancer statistics in your state and on the New York State page addressed a lot of questions about “what next?” Like, if it turns out I do have cancer, how will I afford my care?

Another resource I found was through the American Cancer Society (ACS). I love the American Cancer Society. They have a million awesome programs for patients, they give money to research, offer financial assistance and their phone operators are really knowledgeable and friendly.

Through their website (which is fast, and can be a little tricky to navigate…don’t be afraid to call them directly if you’re struggling to find your way), they have a similar map program to that which the CDC provides. Right here.

When I put in my zip code in NYC, I found no resources. However, when I put in the zip code where I grew up in Wisconsin, I found three centers in my area that provided free or low-cost mammograms.

None of these pages indicate that they offer ultrasounds: only mammograms.

However, if you already have a palpable lump, it is likely a mammogram would confirm cancer.

Which brings us to:

Diagnostic Screenings

I did not use state provided services to attain my diagnostic mammogram. I suspect the resources listed by the CDC specifically would be difficult to navigate and/or receive immediate attention through. This is ENTIRELY conjecture, maybe I’m wrong. I just know how other government institutions work (we’ve all been to the DMV), so it’s just a hunch.

If you feel a lump in your breast and want a diagnosis my personal, non-doctor, all-Jacey recommendation is this:

Find the top five hospitals in your area for breast oncology. I tell you to choose the best for the breast scan because if you establish a relationship with a hospital and it turns out you have cancer it is likely you will stay there for treatment, especially if they are able to help you financially. So, begin with the best.

Call all of them, and ask what kind of services they offer in terms of free or low-cost breast imaging. They will probably tell you they have some day each month where they give routine exams to women over 40. Tell them your story. Ask for their help. Be honest. Be direct. Be calm… even if you’re scared. Someone is going to help you, and figure out a way to give you a scan.

Do not give up. Do not second-guess yourself. Being your own advocate is the first lesson you learn on this journey. Maybe you have a cyst. Maybe you have an overactive imagination. Maybe you have cancer. Let a doctor decide.

If you continue to hit roadblocks, think outside the box. As an actor, I received great help from The Actor’s Fund. Do you belong to a union or other organization that might be able to provide health resources? Do you have friends who are doctors who might be able to advise you?

If that fails you, reach out to some of the organizations I have mentioned: The American Cancer Society, The Susan G. Komen Foundation, Livestrong,CancerCares, StupidCancer, or the Young Survivor’s Coalition.

I wish I could tell you that all or any of these organizations has a quick link to breast cancer screenings for women under 40, but alas, they do not. However, I have spoken and/or e-mailed with people from all of these organizations since my diagnosis, and they have been helpful. If somehow you have run across my vlog and are in the same situation I was in… If you are running out of options, shoot me an e-mail. Seriously. ThatTimeIHadCancer@gmail.com. Sometimes just having someone help you navigate is what you need. That’s why I was so lucky to find The Navigator at the end of my search for a mammogram.

More on her next week. Stay Tuned!